Alysons CFIDS Blog

It's not Lupus, but...

2012-01-29T20:38:00.000-06:00

Has it really been two months since my last post? I really have no idea how time can be passing so quickly...sheesh! Well, Merry Christmas, Happy Hanukkah, and Happy New Year!

I went back to the dermatologist to review my results with her, and she said I do not have lupus. All my follow up tests had come back normal. She did not have any suggestions as to why my other tests were abnormal or why I was losing my hair. She suggested I use maximum strength Rogaine for men and come back in a few months.

Uh, no thanks. I will not be going back to a dermatologist who doesn't even examine my hair, skin, or nails.

After my last experience with a specialist (i.e., when I was MISdiagnosed with epilepsy), I vowed to always seek a second opinion when it comes to more complex diseases and conditions. I made an appointment with a rheumatologist recommend by my local Lupus Foundation chapter.

The good doctor took a very thorough medical history and did a full exam. He confirmed that I did not have lupus, but he noticed that I had unusual muscle weakness. He asked if I had ever been to a neurologist for the weakness. I told him no because I had always assumed it was Chronic Fatigue Syndrome. He suggested the possibility of a metabolic myopathy.

Metabolic what?

Sigh. I often dream of what life would be like if I were normal and healthy and not scheduling medical appointments with specialist after specialist. Wouldn't that be nice?

Deciding to follow up on this new possibility, I ended up making an appointment with a neurologist who specializes in neuromuscular diseases (I didn't want to take any chances going to a general neurologist again). I'll write more about my initial appointment in my next post.

What I'm Thankful For

2011-11-24T10:29:00.001-06:00

Despite all my latest health issues, I still have things to be thankful for. Here's my Top Ten list:

My health. When it comes down to it, I am still thankful for the health that I have. It could be so much worse. It has been so much worse. Just last year I was brought to an ER via ambulance.
My husband, who has stuck with me on this roller coaster of chronic illness. Even though I can get ridiculously emotional when I'm feeling particularly awful, he still loves me!
My parents and brother, who have given me both moral support and space when I need it. They don't live nearby, but they are there when I need them.
My in-laws. They accepted me into the family with open arms. We spend every Thanksgiving with them. We're about to head over to their house now.
My cat, who is the best snuggler when I'm feeling especially sick or blue. In fact, right now she's sleeping next to me with a paw on the keyboard.
My primary care physician, who is also my CFIDS doctor. Her willingness to use unorthodox treatments is why I went from two years of severe illness (before I was diagnosed) to being able to work full time.
My current job. First, I'm thrilled that I am healthy enough to work and have a job I enjoy, even in this economy. Second, this job is less physically taxing than my last one, so I appreciate that I don't have to use as much energy.
My medical insurance. Despite all the frustrations and red tape associated with medical insurance, it has kept us from financial ruin because of my health expenses. So many people are without the luxury of being able to get the care they need because of finances.
Technology. Computer, internet, and phone are my lifelines to the outside world. TV and Netflix keep us entertained (though I'm not thrilled about the fee hike).
Tween books and movies. I'll admit it. I love that stuff.

To those who celebrate: Happy Thanksgiving!

P.S. I see there are some comments in previous posts that I have not yet replied to. I promise I will respond after Thanksgiving!

Lupus or Not?

2011-11-22T21:41:00.002-06:00

I had my appointment with the "specialist" today. I put quotation marks around "specialist" because I'm using that term loosely. It turns out that she was another dermatologist in the same practice who sometimes sees patients with cutaneous lupus, which I'm pretty sure I don't have because I do not have the typical scaly rashes associated with the disease. I was expecting someone who was actually familiar with autoimmune diseases in general, including the systemic version of lupus.

Here's why I think the doctor did not do a good job. My blood pressure and temperature were never taken. I was wearing jeans and a sweater, yet she never asked to examine my skin. She did not examine my nails (which, by the way, are soft and have some pitting). She never looked at my scalp or examined my hair (which I'm losing), which was my main complaint to begin with. She never asked about my energy level (terrible fatigue), lymph nodes (they're sore), any rashes (eczema and past photoallergic reaction), etc., etc., etc.

What she did do was tell me she didn't think I had lupus or any sort of autoimmune disease....based on what? I'm not sure. She simply said I didn't fit the criteria. Considering she didn't ask me many questions or do any examination at all, I don't really know what "criteria" she was referring to.

I can only guess that she was referring to the lupus diagnostic criteria developed by the American College of Rheumatology; however, she never asked me about most of those symptoms, and I'm pretty darn sure it's impossible to know how someone's urine is doing without a test.

Don't get me wrong. I don't actually want lupus. Heck, I don't want CFS/ME or anything else for that matter. I just want to know what's wrong with me, and I would like a doctor to be thorough. If I'm seeing a dermatologist, I would expect that person to examine my skin, hair, and nails. She did exactly none of the above.

What she did do right was order some appropriate follow-up tests (in no particular order):

Anti RNP: often found with many autoimmune diseases
Anti Ro/SS-A and Anti La/SS-B: often found in people with Sjogren's syndrome or cutaneous lupus
Anti Scl-70: often found in people with scleroderma
Rheumatoid factor: high levels often found in people with rheumatoid arthritis
Anti double-stranded DNA: found in 30 to 50% of people with lupus
C3 and C4 Complement Proteins: low levels may indicate active lupus (or other infections)
C-reactive protein: high levels indicate inflammation, people with active lupus or other types of inflammatory diseases or other infections often have high levels
Erythrocyte sedimentation rate (a.k.a. sed rate): people with active lupus (or other infections) often have high levels
Thyroid peroxidase antibodies: presence indicates autoimmune thyroid disease
Hepatitis panel and HIV: I'm not entirely sure why she ordered these because I don't have symptoms or risk factors, but whatever...

What she didn't order, but I think she should have are: urine test (presence of protein indicates problems with the kidneys) and Anti-Sm antibody (found almost exclusively in people with lupus; 20 to 40% of people with lupus have it), parasite tests (some of my most recent blood test results could indicate allergic response, autoimmune disease, other illness, or parasites).

What she didn't order, but could have because they wouldn't be a bad idea: anti-histone (sometimes found in people with systemic lupus, but often found in drug-induced lupus), anti-phospholipids (found in approximately 30% of people with lupus).

In case you were wondering where I was getting my data and suggested tests, here are the links to the Lupus Foundation of America and the Johns Hopkins Lupus Center.

Speaking of blood test results, the following things were normal (or at least normal for me) for the tests the original dermatologist did about a week and a half ago: RBC, Hemoglobin, Hematocrit, MCV, MCH, MCHC, RDW, lymphocytes, monocytes, platelet count, ferritin, glucose, free T4, TSH, RPR (syphilis), DHEA. Here's a link to understand what some of the acronyms stand for.

The following results were abnormal:

ANA -- high, speckled and homogeneous patterns present -- 1:160 (expected range < 1:40)

Read about possible reasons for high ANA.

White Blood Count -- high -- 13.1 K/UL (expected range: 4.0-11.0)

Read about possible reasons for high WBC.

Neutrophils -- low -- 28% (expected range: 40-74)

Read about possible reasons for low neutrophils.

Eosinophils -- high -- 30% (expected range: 0-7)

Read about possible reasons for high eosinophils.

Basophils -- high -- 3% (expected range 0-2)

Read about possible reasons for high basophils.

Testosterone -- low -- < 17 NG/DL (expected range 17-76)

Read about possible reasons for low testosterone.

Obviously, something is going on in my body. I am anxious to get the results of the tests they drew blood for today, but it will be at least a week or two. The doctor today did also mention one thing that makes good sense. She said if my follow-up blood tests come up negative/normal, it might be a good idea for me to see an immunologist.

In addition to the wacky immune system results above, I have chronically low Natural Killer cells (not unusual in people with ME/CFS). On a side note, I found an interesting web page with info about NK cell deficiency. I have never heard of this website before, so I have no idea how legitimate it is. Read at your own risk.

At some point after I get all my results back, I will be seeking a second opinion. I am tempted to see a rheumatologist/immunologist who specializes in lupus and other immune system diseases. That person might be able to sort through all my weird results and help figure out why I'm losing my hair!

I'm exhausted. Good night!

I'm Losing My Hair (Part II): Visit to the Dermatologist

2011-11-21T18:52:00.000-06:00

My visit to the dermatologist on Friday, November 11 was a blur because I was just so shocked that she could easily see my hair loss. I didn't even have the chance to tell her I had collected hairs to prove I was losing an unusual amount of hair each day. She could see the loss clearly.

I told the doctor I had a history of hair loss presumably due to medications. She went through several additional reasons why I might be losing hair. Here are the ones I remember her mentioning:

Genetics (i.e., female pattern hair loss)
Extreme stress
Major physical event (such as a severe illness)
Nutritional deficiency, usually iron
Thyroid problems
Certain diseases (She did not mention any particular ones.)

She didn't mention PCOS, but I have read that some women with this condition experience hair loss, so I asked her to also check my hormone levels. The dermatologist ordered the following blood tests (in alphabetical order):

ANA - the presence of antinuclear antibodies can indicate autoimmune diseases such as lupus, which can cause hair loss
CBC - complete blood count, a general overall blood test to check for abnormalities in the blood
DHEA - dehydroepiandrosterone, a hormone that at high levels is sometimes associated with hair loss
Ferritin - the protein that binds to iron in the blood, there is some evidence that low iron can lead to hair loss
Glucose - sugar in the blood, diabetes can cause hair loss
RPR - rapid plasma reagin, a screening test for syphilis, which is known to cause hair loss
Testosterone - a hormone indirectly associated with scalp hair loss (as well as unwanted hair growth)
T4, Free and TSH - thyroxine and thyroid stimulating hormone, both hypothyroidism and hyperthyroidism can cause hair loss

The doctor really needs to work on her bedside manner because she said that if all the blood tests came back negative, there was nothing she could do to help me. Sheesh, talk about a morale crusher.

After I left the doctor's office, I was very upset. I was sad that my hair loss had been confirmed and angry that the doctor left me feeling hopeless (I assumed everything would come back normal like it nearly always does). I took the confirmation that I really was losing my hair quite hard. I cried... a lot.

Even though I didn't have any sort of diagnosis yet, the knowledge that I really was losing my hair was enough to shake my confidence. I entered a weird state of mourning over my past and future lost hairs, not knowing if my hair would ever grow back to its former thickness or if I would continue to lose it until it was too obvious for others to miss.

I feel guilty that I am so sad about something so superficial as hair loss; after all, it's not as though I'm dying or horribly disfigured. In fact, at this point, most people can't tell my hair is thinner than it used to be. I know it's what's inside that counts and that we all have inner beauty (blah, blah, blah), but I can't help how I feel. I suppose I need time to adjust.

I heard back from the dermatologist a week later on Friday, November 18. She left a message that said that my lab results were abnormal and I had elevated ANA levels. She said my results may indicate lupus or some other type of autoimmune or connective tissue disease, so she wanted me to see their specialist.

Lupus?! I did not see that coming. I've been tested for autoimmune diseases at least twice before (in 2005 when I got my initial ME/CFS diagnosis and again in 2009 when I participated in CFS medical research), and both times came out negative.

More tears. I was hoping for something simple like low iron. All I have now are questions. Is it possible that I've developed Lupus in addition to CFIDS? Has it been Lupus all along? Or was this test a false positive and am I wasting emotional energy? If it is an autoimmune disease, how sick will I get? If it's not Lupus, then I still don't know why I'm losing my hair...

I can't quite explain why I'm so upset. Maybe it's because I've gotten used to ME/CFS and have already experienced its range -- from being so sick that I couldn't have a job and slept up to 20 hours per day to having a full time job and being mostly functional. I understand ME/CFS; I generally know what to expect. Lupus is foreign and new.

Coincidentally, I had an appointment scheduled with my CFIDS doctor today. I told her about the recent events, and she was not particularly concerned about my ANA results. She said she often sees elevated ANA levels in people with fibromyalgia (I should mention that I've never actually been diagnosed with fibro) and that her lupus patients usually had much higher levels than my modestly elevated 1:160.

I felt a lot better after my visit to my CFIDS doctor. She has a much better way of conveying information than the dermatologist who did not do a good job of offering hope.

Obviously, I will be having more tests done, but I hate waiting and wondering about the unknown.

My appointment with the autoimmune specialist is tomorrow. I will be going in armed with my medical history, questions, and research. No matter what happens, though, I will be seeking a second opinion. I have learned my lesson in going with single opinions in significant health matters.

I'm Losing My Hair (Part I)

2011-11-20T16:37:00.002-06:00

I apologize for the long periods between posts. This year has been a difficult one with all sorts of unpleasant surprises.

Just a few weeks after my photoallergic reaction (see previous post), I had two long weeks of severe gastroenteritis with bouts of nausea and vomiting (and a little diarrhea). I had so much constant nausea that family and colleagues at work asked if I was pregnant (I wasn't). I became so weak from the illness that at one point, I could no longer go up and down the stairs in our home and my husband had to carry me. I was going to write an entire post on this experience, but more recent developments have come up that I feel are more important to write about.

My post title is not exactly cryptic. I'm losing my hair. I have gone through periods of excessive hair loss in the past, but doctors have minimized the issue when I've mentioned it, so I never seriously pursued it because I had more pressing issues to deal with. Their reasoning has been that I was probably just too stressed about something or another. (Don't get me started about doctors disregarding patient concerns...I might use some choice words that are not very family friendly.)

The first time I remember experiencing hair loss was around 2002-ish. I am pretty sure it was due to a poor reaction to the medication mesalamine, something I had been prescribed for non-specific colitis. After an initial "it's your imagination" experience with the prescribing doctor, he did some digging and found that hair loss (along with the other disturbing side effects I was experiencing, including tremors and extreme muscle weakness) could be one of the side effects. I stopped the medication, and the hair loss eventually subsided.

The next time I remember discussing hair loss with a doctor was in mid-2010 when I was taking all sorts of anticonvulsant (i.e., anti-epilepsy) medications after having been MISdiagnosed with epilepsy. I told the neurologist that I thought I was losing unusual amounts of hair and was concerned it was the medications he had prescribed. He told me it didn't look like I was losing my hair and that any hair loss was either normal or from the stress of the diagnosis. (By the way, this is also the doctor who MISdiagnosed me epilepsy and prescribed a medication that caused me to have a life-threatening anaphylactic reaction.)

In early 2011, I mentioned the hair loss to my endocrinologist. I can't remember her response, but she obviously did not seem to think it was an issue because my thyroid results were normal and there was no follow up.

Well, this time the hair loss is worse than it's ever been. Handfuls come out in the shower, and our floors are covered in my hair. On the upside (if there is an upside) the hair loss is diffuse, so the untrained eye may not be able to detect the thinning. I, however, know what my hair is supposed to look like and how thick my ponytail is supposed to be.

I'll admit, there were days I wasn't sure if I was actually losing my hair at an unusual rate or if I was imagining things. I wanted to make sure I had proof that I was losing my hair before going to a doctor because I didn't want to deal with another doctor who didn't take me seriously. That's when I got scientific. I looked up estimates on how many hairs a day lost is normal, and I decided to try to catch as many of my hairs as possible and count them. Different sites quote different amounts, but the "normal" range seems to be anywhere between 50 and 150 hairs per day.

I counted every hair I could catch for four days. I got most of the hair from my brush, pillow, in the shower (at least whatever didn't go down the drain), and off the floor after drying. Here are my totals:

Day 1: 236
Day 2: 151
Day 3: 231
Day 4: 190

These numbers don't even include all the other "random" hairs that might fall out throughout the day. I could no longer deny my hair loss. I debated between scheduling an appointment with an endocrinologist or a dermatologist. I ended scheduling with a dermatologist in a medical school dermatology department that listed "hair loss" as one of their specialties.

I was armed and ready to defend my reason for my appointment as soon as the dermatologist stepped into the exam room, fully expecting her to tell me it didn't look like I was losing my hair. She completely disarmed me when she immediately said she could "really see it."

I wasn't sure if I was relieved that she believed me or devastated that it was really happening.

Here is a chart that shows degrees of female hair loss. According to WebMD, it's called the Savin Scale. I estimate that my hair loss is around I-3.

Here's my head (it is difficult to get the lighting just right so as not to have a big glare on my scalp...):

As I mentioned above, the hair loss is diffuse, so it's difficult for the untrained eye to see the loss at this point. I am sad to say that I am pretty sure I have lost about 50% of my hair volume.

In my next post, I'll discuss my actual appointment, tests done, preliminary results, and emotional fallout.

September Already? July was Itchy.

2011-09-25T12:29:00.002-05:00

Update 10/10/2011: Scroll down to see a picture of the rash!

I'm really not sure how it got to be September. Didn't I just write about being bloated? I got my results back and it turns out I did have candida overgrowth.

Soooooo much has happened since I last wrote. In later July my hubby and I went on vacation to a beach area. I'm pretty sure I spent more time outside that week than I'd spent in the last few years. I really hate sunburns and I had no desire to get a tan, so I used LOTS of sunscreen. Despite my best efforts, I still managed to get a little bit of a tan.

No big deal, right? Ha! It's me we're talking about.

A few days after getting back home, I started to develop a rash on my forearms. What was different about this rash was that it seemed to be spreading only to areas that I got the most sun. I went to my allergist's office and saw her physician's assistant. I told him I was concerned that I was having some sort of photoallergic reaction. He didn't think that was likely (because such reactions are very rare), and he tried to convince me that it was heat rash. Um, heat rash happening days later? Only on the most sun-exposed areas? Sure.

The rash started to spread and eventually covered my the back of my hands, outside of my arms (up to a short sleeve line), part of my neck, and an area shaped like a V on my upper chest imagine the shape of a a V-neck shirt). I was uncomfortably itchy.

I decided to take matters into my own hands, so I got online to find out what kinds of medications can cause photoallergic reactions. It turns out that pretty much anything can cause a photoallergic reaction in someone; however, certain medications are more common than others. Sunscreen is a common culprit, but I ruled out my sunscreen because the rash was not going away even though I was no longer using the product.

At some point I discovered that birth control pills can cause photoallergic reactions. Furthermore, the reaction is often delayed -- occurring 42 to 72 hours after sun exposure.

Based on the medical article I found, I decided to stop my birth control pill for a week to see if I started to see improvement. Up until that point, there was no improvement despite high doses of antihistamines and prescription steroid creams. I thought I might not be improving because the birth control was still in my system and my rash areas were still getting exposed to the sun.

My allergist (not the physician assistant that I saw) called to check on me because she was reviewing charts. She was especially interested in my case because I was the patient she saw last year who had an extremely rare anaphylactic reaction to a medication that was not known to cause such reactions. I told her my theories about the birth control pills and she said anything was possible.

Sure enough the rash started to improve quickly a few days after stopping the pills.

It is entirely possible that the timing of the improvement after stopping the pill was a coincidence, but I'm pretty convinced it was a photoallergic reaction because of the strange pattern the rash took -- only appearing on the parts of me that received the most sun. I don't think the rash appeared on my face because I wore a hat and sunglasses every time I went outside in addition to wearing sunblock.

My allergist called to check on me again about a week after her last call, and I reported that the rash was significantly improving. She said that she learned a long time ago in her residency that anything is possible when it comes to side effects of medications. She has also learned with me that I seem to have a talent for developing unusual side effects.

What's interesting is that I am now back on my birth control pills with no problems, probably because I don't spend much time outside. The only sun I get is walking from my car to whatever building happens to be my destination. I don't foresee spending a week in the sun again for a long time, so I don't think I'll be having another reaction any time soon. Besides, I now know I should dress for winter the next time I go to a beach! :)

Update 10/10/2011: I thought I'd add a photo of the the rash. This is a picture of my arm. It's hard to see because the quality is not that great (I took the picture with my phone), but if you look closely you can see that the rash is much more prominent on my lower arm. The texture was similar to a really bumpy orange peel. The rash also pretty much disappears at the top of my arm and shoulder where my t-shirt sleeves covered the area.

I'm Bloated, Not Pregnant

2011-07-04T23:43:00.048-05:00

Hello faithful readers! My apologies for the slow down in posting.I have been putting most of my energy into getting better, so I've slowed down on the blogging. Don't worry, I do not plan on stopping! :)

Last week I decided to focus on a symptom that's been with me on and off for years but was not high enough on my priority list to actively address -- bloating.

Tackling bloating is my latest project.

In the past, I've been so busy with other medical problems (ME/CFS, PCOS, asthma, allergies, migraines, etc.) that "bloating" did not really seem all that important. After all, everyone experiences bloating from time to time, right? Now that I'm in a much better place physically this year, I've started addressing issues that have long been on the back burner, so to speak.

Perhaps, I need to explain the extent of my bloating and why I think it's important to deal with it. There are days that I look about three months pregnant (just google three months pregnant to see pictures). A few days later, I could be back to normal. Just to make sure I wasn't imagining things, I got out a tape measure to see how much my waist circumference was fluctuating.

Turns out, my waist expands 2 to 3 inches on a bad bloating day. Sometimes I feel the skin on my stomach stretching uncomfortably. (Sorry if that's a bit too graphic.)

No, I'm not pregnant. You'll just have to trust me on this.
I did some reading and found a few possibilities for my bloating:

Irritable Bowel Syndrome (yup, have that)
Food Sensitivities (have that one, too)
Yeast Overgrowth in Intestines (hmm...very possible)
Parasites (possible because before getting sick I traveled abroad extensively, including visits to less developed countries)

The first two I already know I have, there's nothing much I can do but keep avoiding gluten and dairy products. The latter two seemed like possibilities that I thought I could treat or rule out.

On Friday I had an appointment with my doctor (who treats lots of patients with ME/CFS) and told her about the bloating. I asked if she thought it was possible for me to have a yeast overgrowth or parasites. She said it was possible, so she ordered blood work and a take home stool test (very unpleasant). I forgot to ask when I'll get the results, but I will be sure to post them.

Rather than wait for my results, I decided to get started on treating a possible yeast overgrowth naturally. The products I'm using should not cause me any problems even if my tests don't show too much yeast. I found an interesting article by Jacob Teitelbaum (he wrote From Fatigued to Fantastic) about treating yeast overgrowth. I'm not following his specific protocol, but I am generally following the principles.

(By the way, my mom bought me his book a while back, and I've found it interesting and helpful in terms of different supplements and treatment possibilities.)

I've started Garden of Life Fungal Defense, which seems to be recommended by people on quite a few websites for people with Irritable Bowel Diseases (like ulcerative colitis and Crohn's disease). Fungal Defense has herbs like oregano and includes enzymes that help break down fungus. I'm on day five.

When I finish my two weeks on Fungal Defense (or maybe before...I haven't decided yet), I'm going to start on a mix of probiotics. I've been on probiotics before, but I never really paid much attention to the different bacteria strains.

I've read that certain probiotics may help certain conditions. For example, one strain of bacteria might help eczema, while another might be better for general IBS. After looking up what different strains are supposed to do, I found that Garden of Life makes a probiotic with all the strains I was looking for.

I don't know how much I believe in the miracles of good bacteria, but I figure it's worth a shot.

I really hope I don't have parasites.

I'll keep you posted.

My Disclaimer: I listed a few products in this post. I am not being compensated by anyone to mention these products and do not recommend you use them until you've spoken with your doctor.

Advocacy Alert: Last Day to Vote for Chase Giving

2011-05-25T20:08:00.000-05:00

Help the CFIDS Association and Whittemore Peterson Institute win money from Chase Bank! Today is the last day to vote for your favorite charities. The contest ends in a few hours at 11:59pm Eastern. We are in round two of the contest. All the organizations participating in round two were awarded $25,000 in round one.

What's Happening Now (from the Chase Giving facebook page)

There’s another $2.5 million in donations on the line – and your votes could be the deciding factor! The time is now, so check out the Top 100 charities, explore their Big Ideas, and vote for the ones you think would do something amazing with $500,000.

How To Vote (some instructions from the CFIDS Association email)

First, log into your facebook account. You must have a facebook account to do this.

Next, "Like" Chase Giving Community (http://www.facebook.com/ChaseCommunityGiving ). You should see the Like button in the left column.

Then go to http://apps.facebook.com/chasecommunitygiving/?ref=ts (yes, that's the correct web address) and search for "CFIDS Association" and cast your vote by clicking the "Vote" button. (You have to "allow" Chase Giving to access your account info in order for your vote to count. This enables them to keep track of the voting under the "one vote per charity" rule.) Next search for "Whittemore Peterson" and vote.

While you're at it, vote for the The National Marfan Foundation. According to the CFIDS Association, their organization is encouraging its supporters to vote for the CFIDS Association and WPI.

Happy voting!

Have I Been Overdoing It? & I Hate Bug Bites

2011-05-01T15:49:00.003-05:00

Have I Been Overdoing It?

To answer my own question. Yes. All the amazing energy I've had for the past few weeks seems to be waning a bit. It's my fault, though. As my energy increased, I took to doing more chores and food preparation. I even went grocery shopping by myself a couple of times. (For people with ME/CFS, grocery shopping can be like running a marathon -- exhausting.)

I think I got reckless in my activity level because I hadn't felt that good in many years. A little part of me (ok, a big part) also thought I might be healthy enough not to be susceptible to my nemesis, Postexertional Malaise. Unfortunately, I was wrong.

For the past few days I've been plagued by my other adversaries, Low-Grade Fever, Sore Throat, Cold Sores, and Constant Fatigue. Boo! On the upside, this setback does not feel nearly as bad as my typical crashes.

While I'm not thrilled about my enemies revealing themselves all at once over the past few days, I'm glad they didn't put me out of commission completely. This incident serves as an important reminder to me that I still have to be careful. I'm not Superwoman, after all.

I Hate Bug Bites

To add insult to injury, I woke up yesterday (or was it the day before...) with bug bites on different parts of my body (head, ear, wrist, leg, ankle). I have no idea what kind of bug bites they are, but they are so itchy that they woke me up the night I got them and kept me up much of last night.

I am paranoid that we have fleas or bed bugs, though we have not been able to find any evidence of either type of infestation. I've been surfing the web looking at detection and extermination options for both types of bugs. Some of the photos are disgusting, and the horror stories will make you think you've got bugs in every crevice of your home.

We washed all the bed sheets, blankets, mattress cover, and allergy covers in hot water. After inspecting our mattress, we wiped down the bed frame with damp paper towels looking for evidence of bed bugs (none found). We then vacuumed the room just in case there were any bugs or eggs hanging around the floor. Luckily, we don't have carpet, so it's harder for bugs to hide from us.

My husband has not gotten any bites and I haven't gotten any new ones, so I'm hoping the bites were an isolated incident. Cross your fingers for us!

Part VI: Psychologist for Vulvodynia

2011-04-29T13:25:00.009-05:00

Disclaimer/Warning: This post mentions specific sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

This is my last post specifically dedicated to my struggles with vulvodynia and related issues. I hope that sharing my story has helped people better understand this rarely discussed disorder. To my sisters with vulvodynia, you are not alone!

Though I consider myself a well-adjusted person, I have seen my fair share of counselors and psychologists to help me through tough times. Whenever I saw someone in the past, it was because I sought that person out. My latest experience with a psychologist, however, was because the pelvic health center told me I should see one.

At first I thought they were implying that my vulvodynia was in my head (a knee-jerk reaction because I was once told by a terrible doctor to see a psychologist because there was no such thing as CFS...), but that is not what they meant. Their therapy focuses on the whole person, and working on the mind is merely one aspect.

I did not know what to expect from the psychologist they recommended. I needn't have worried, however, because the psychologist has been good for me. She's helped me deal with all kinds of emotions that surround vulvodynia, including guilt and shame. Turns out that not being able to have sex with one's husband produces all sorts of psychological issues. Go figure.

She's also helping me to deal with other issues related to my health, like dealing with chronic illness and coping with the horrible PTSD flashbacks I get every time I see and hear an ambulance ever since my anaphylactic reaction to a medication my old neurologist erroneously prescribed (long story, still too traumatized and angry to give all the details). Sorry about the run-on sentence just now.

Digging up all these emotional issues has been the epitome of "un-fun," but I think it is something I need to go through to be on my way to complete mental health.

Just as I haven't seen any direct improvements of the vulvodynia because of my nutrition change, I have not seen any direct improvements of the condition because of the psychologist. However, I suspect that my overall mental health is improving.

Part V: Nutritionist & Turning Point

2011-04-25T13:16:00.003-05:00

On my first visit to the pelvic health center they suggested that, in addition to going to treatments at their facility, I see a nutritionist and a psychologist. They explained their center uses an holistic approach to healing. After I got past the "so you think I'm fat and crazy" reaction (sorry, but this is really how I felt at first), I realized that it couldn't hurt for me to follow their advice. It could even be a good thing.

I have lost 14 pounds since February, 8, 2011. That's 14 pounds in 11 weeks! What's even better is that I have not been on a diet of deprivation (i.e., starvation), nor have I had to go hungry or eat just small bits of "rabbit food" (i.e., tiny salads). I am eating as much food as I want (without overeating), and I am still losing weight. The trick is that I have changed what I eat.

As I mentioned in a previous post, PCOS and Pre-Diabetes, I was diagnosed with insulin resistance in January as a result of my PCOS. I started taking a medication called metformin to help with the condition, but I did not really see any results after a month.

Even before my first appointment with the nutritionist, I started a new diet program in February (they actually call it a "lifestyle change") through my work. The basic concepts I took away from the program were to:

cut sugar intake -- no sugar in the first few weeks of the program, then in moderation after that; when having anything with sugar, it must be with a meal that includes protein (this helps the blood sugar and insulin levels from spiking)
eat protein at every meal -- protein will keep you from feeling hungry for longer periods of time
keep the size of your stomach in mind -- while the program did not focus on portion control, it explained that the human stomach is naturally about the size of a loosely held fist; somehow knowing my stomach really isn't that large keeps me from eating too much
eat more slowly -- eating slowly will naturally cause you to eat less because your brain will feel satisfied sooner
stop eating when satisfied -- which is before you have overeaten

The program lasted 10 weeks, so there are many more concepts that were covered; however, the ones I listed are the ones that have stuck with me. What made this particular program so doable was that it did not tell you specifically what to eat or not to eat (other than the sugar thing). Just cutting sugar (desserts, sweetened snacks, sodas, sports drinks, and anything else with sugar added), allowed me to lose four (4!) pounds in the first week alone.

I saw my nutritionist a couple weeks after I started the above program. He agreed that I should not be eating any sugar. He also strongly believed that many of my problems were rooted in gluten sensitivity. Though skeptical at first, I embarked on a gluten-free and casein-free diet. (See my post Gluten-Free Me?! And Casein, Too? to read about the start of my gluten-free diet.) In my second appointment with the nutritionist, he gave me a personalized diet and supplement plan.

The main points I've taken away from my nutritionist's plan for me are:

No gluten
No casein (milk-derived products, including butter, creamy dressings and sauces, etc.)
No sugar -- in addition to the obvious, this includes fruit drinks, fruit jams/jellies/preserves, and random food items with sugar added (reading food labels is more important than it used to be); I am allowed to have dessert about half a dozen times per year on very special occasions (such as my birthday, my husband's birthday, and special holidays)
Eat more veggies and less fruit -- fruit contains so much sugar that it can act like a dessert and spike sugar and insulin levels; if I eat fruit, it is always as part of a meal along with a protein and healthy oil
Eat the three macronutrients at every meal or snack -- protein, healthy oil high in omega-3's (like olive, almond, or avocado), and a complex carbohydrate (like spinach, other veggies, beans, etc.)
Take supplements -- he gave me a pretty extensive list, but the most significant change was to take huge amounts of pharmacy-grade omega-3 fish oil (interestingly, I was already taking most of the supplements the nutritionist recommended; I will list my current supplements in a future post)

Because of my huge improvement in the way I feel, I have no doubt that I needed to go gluten and casein free. I have much more energy and am the closest to feeling truly healthy than I have ever felt since getting sick with CFIDS about ten years ago. I never imagined that just changing the way I eat would help me so much.

Embarking on this "extreme diet" has been easier than I anticipated. Don't get me wrong, it's been challenging and sometimes maddening; but it's been worth it. I think I was just so desperate to start feeling better and so tired of being sick and tired for so long, that I was ready and willing to make such a big life change. It took me about 8 weeks before I started to feel a big difference, and now that I am seeing so much improvement, I don't want to stop. I see the light at the end of the tunnel. For the first time in a long time, I am starting to believe that I will get better.

Interestingly, because my genetic test showed that I had two copies of a gluten sensitivity gene, it meant that both my parents gave me the gene. I told my parents about my results, and they decided to go gluten-free, too. Incidentally, they are feeling better on a gluten-free diet.

I can't say that my healthier eating habits have directly helped my vulvodynia, but they have certainly helped so many other aspects of my health. I'm amazed.

Part IV: Physical Therapy for Vulvodynia, Continued

2011-03-27T20:24:00.001-05:00

I probably should have explained why I was so prolific earlier this month. I had a week off from work, which is why I was able to write daily. Now that I'm back at work, I don't have nearly as much mental or physical to write. I'm also coming off a crash from about a week ago. I'm fighting a sore throat, low grade fever, and extra weak muscles. Bleh.

Disclaimer/Warning: This post contains a frank discussion about specific female organs and sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

I go to physical therapy about two to four times a month -- which amounts to once a week to every other week. The entire staff at the pelvic health center is made up of women, so I feel comfortable going. My physical therapy utilizes a combination of biofeedback, physical therapy, and relaxation techniques. I'm sure there's much more involved, but this is the only way I know how to explain it. I see two different people at the pelvic health center -- a biofeedback specialist and a licensed physical therapist. I meet with the biofeedback specialist more often than the physical therapist.

I am not a doctor or researcher, so I do not entirely understand the mechanisms of biofeedback. I am going to explain my therapy the way I see it. I apologize in advance if anything I say turns out to be incorrect. Here are some articles about biofeedback for vulvodynia that include history and research.

The biofeedback specialist inserts a probe into my vagina, which measures the activity of my pelvic floor muscles. I am able to see my muscle activity charted in the form of a continuous line graph on a computer screen. The specialist walks me through a series of kegel exercises (usually used to help people with urinary incontinence), which allows me to view my muscle activity on the screen. I can "see" the contraction and relaxation of my pelvic floor muscles.

I am supposed to focus on how I feel when my muscles are relaxed and work on keeping them that way all the time. After the kegel exercises, the biofeedback specialist will often play a relaxation CD so that I can focus on relaxing my entire body including the pelvic floor muscles (which, if you'll recall, I was constantly contracting). Between the relaxation CD and watching my muscle activity on the computer screen, I am somehow able to make my pelvic floor muscles relax even more. It's pretty amazing.

The physical therapist focuses on my whole body. She makes sure my pelvic floor muscles, head, neck, back, and legs are all aligned and working properly. If there is tension in a particular area she will massage the area and/or give me specific stretches or exercises to do. When she works on my pelvic floor muscles, she inserts a gloved finger into my vagina to massage and stretch the muscle walls. The procedure is uncomfortable because of the stretching. There is some pain involved, but the therapist is careful to use less pressure if I can't tolerate it.

In addition to the biofeedback and physical therapy, I also have a set of vaginal dilators that I use at home. They come in sizes XS, S, M, and L. The idea is to start at the smallest and work up to the largest as I am able. When I first start a new size, it can be very uncomfortable and involve some minor pain; however, as I have progressed in biofeedback and physical therapy, I have been able to do better with the dilators.

I have been in therapy for about two months and have made significant progress. During my last period, I was able to use the largest tampons without pain. While this is something many women take for granted, I consider it a major milestone.

In my last post about vulvodynia, I'll write about the nutritionist and psychologist the pelvic health center recommended for me.

Part III: Physical Therapy for Vulvodynia - 1st Visit

2011-03-20T22:05:00.002-05:00

Disclaimer/Warning: This post contains a frank discussion about specific female organs and sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

As I mentioned in Part II: Vulvodynia Treatment Options, I found the idea of physical therapy for my vagina quite odd. I'd heard of going to physical therapy for nearly every other part of the body, but for a vagina? Seriously?!

My wonderful gynecologist talked about physical therapy in a very matter-of-fact way. She explained that what I had was a medical issue that needed to be resolve in a medical way. Though an obvious explanation, it helped me to hear it come from a doctor because I'd spent years emotionally beating myself up over this. The doctor then went on to tell me that she had another patient who had not been able to have sex with her husband of 10 years whom she'd referred to the physical therapy place who was now pregnant.

I started to have a little hope.

I scheduled an appointment for my physical therapy with the pelvic health center my doctor recommended. I had no idea what to expect, but my imagination ran wild. I imagined everything from medieval torture devices to kinky sex toys. Fortunately, my treatment turned out to be something closer to the middle. Their entire practice is devoted to helping women improve or entirely overcome various types of pelvic issues -- from incontinence to vulvodynia, and they treat every patient with understanding and dignity.

My first visit involved a long medical history form and interview with the center's director. She explained the center's holistic approach to therapy. She said that they see many women like me and are usually very successful in treating my particular condition. The director mentioned the same patient my gynecologist had told me about before -- the women who had not been able to have sex with her husband of 10 years who was now pregnant (the woman, not the husband).

I felt encouraged.

Many women that come to the practice are out of balance in some way -- whether nutritionally, hormonally, physically, psychologically, or all of the above -- and they like patients to address all their issues. Interestingly, no one in the practice was surprised to see my long list of health problems. I can only assume that quite a few people with multiple chronic illnesses are patients here.

After I finished meeting with the director, I met with one of the physical therapists for my initial evaluation. I felt a lot of apprehension at this point because I knew this was the time I would have to drop my pants. Evaluation involved (painfully) inserting a narrow probe that would measure my pelvic floor muscle activity and sticking what looked like EKG electrodes to my stomach to measure my abdominal muscles.

Turned out that I was constantly contracting my pelvic floor muscles, which meant nothing was getting in there. The physical therapist was pretty shocked at how strongly my muscles were contracted; she said it was one of the worst she'd seen. She also said they'd been able to help women with as serious a problem as I had.

I started to have a little more hope.

After the initial measurements were done, the therapist recommended I do four things:

Purchase a particular relaxation CD. The particular CD's they recommend help women relax every part of their bodies, including pelvic floor muscles.
Purchase a particular set of medical vaginal dilators. The kind the center recommends are primarily used in hospitals for women who have had cervical cancer.
Make an appointment with a particular nutritionist with the hope that I would adopt a diet that could help my prediabetes and IBS symptoms
Make an appointment with a particular psychologist to deal with all the emotional issues surrounding my health.

At first I was mildly offended they thought I needed a nutritionist and psychologist because I thought I was already a pretty healthy eater and was dealing pretty well with my issues, thank you very much. However, I had already decided I was going to follow their program because of all their experience, so I made the appointments. I'm glad I did. I'll talk about the nutritionist and psychologist in a future post.

I knew that going through this process would be a financial investment (i.e., expensive), but my husband and I decided that we would go for it and would put everything on our credit card if we had to. Amazingly, my medical insurance covers most of the costs of my treatment.

Well, it turns out that explaining everything has taken much longer than I anticipated, so I will have to do a Part IV (and maybe Part V) to talk about subsequent appointments. Until then, think good thoughts!

No More Cheese or Yogurt!

2011-03-19T22:18:00.002-05:00

I know I promised to talk about my vulvodynia treatment in this post, but something came up that I wanted to write about. As I mentioned earlier this week, I'm working on cutting not only gluten from my diet but also milk products because of a possible casein (milk protein) intolerance. I already know that I have lactose (milk sugar) intolerance.

For over a month, the only milk products I had were what little milk product might be in fake butter, certain potato chips (sour cream and onion flavor), and salad dressings (usually Caesar). It's important to note that I did not have the above products very often.

Well, the last couple of days I had some serious milk products...and I'm paying the price.

Two nights ago, my husband and I had a lovely homemade dinner of tilapia, asparagus, and baked potato. In the past we have substituted plain yogurt for sour cream because we thought yogurt to be healthier than sour cream. That night was no different. We put plain yogurt on our potatoes. A couple hours after dinner, I had stomach pains and diarrhea. However, I did not connect the yogurt to the stomach problems until the next evening.

Last night we went to a Mexican restaurant for dinner and ordered queso (cheese dip) for our chips. Big mistake. I felt fine all through dinner, but I started to feel nauseated on the drive home. By the time we got home (about two hours after having the queso), my stomach was bothering me even more. Sure enough. Diarrhea. About 10 minutes later, I vomited from the nausea.

If I had not had a problem the night before, I might have blamed food poisoning on my stomach issue after the Mexican restaurant. However, because of the timing of things, I was pretty convinced that my problem was yogurt and cheese. So convinced, in fact, that I ate my leftovers (minus the cheese) for lunch about six hours ago and feel fine.

New Note (5/1/11): I found out today that some restaurants use queso that includes gluten. No wonder I had such a violent reaction. My body was reacting to gluten, casein, and lactose!

In addition to the gastrointestinal issues last night and the night before, my eczema has flared up quite a bit. I even developed a new area of rash just under my right ear. Hmmm...sounds like an allergic reaction to me.

I can't remember if I included links to the differences between lactose intolerance and casein intolerance in my gluten post, but eczema or skin rashes are common symptoms of casein intolerance. Diarrhea can be a symptom of both lactose and casein intolerance.

I am officially cutting out cheese and yogurt now. Before, I was generally avoiding it but not actively cutting it out of my diet. I don't know if that last sentence made any sense, but I'm leaving it in anyway! :)

Part II: Vulvodynia Treatment Options

2011-03-18T09:40:00.001-05:00

Lidocaine to numb the pain with the hope that I would be able to tolerate sex.
Physical therapy.
Surgery to remove the inflamed areas.

I immediately ruled out surgery because (a) the idea of any kind of surgery to cut out parts of my vagina sounded horrible and (b) my body has a habit of not healing very well anyway. I thought physical therapy seemed weird, so I nixed that idea, too.

I decided to go with the simplest plan -- lidocaine.

I tried the lidocaine a few times, but it didn't work for me. It seemed to irritate my already sensitive skin, and the vaginismus (involuntary muscle spasm) was just too strong. Nothing was going to get in there.

Around the time I got diagnosed with vulvodynia, I was MISdiagnosed with epilepsy. Being able to have sex with my husband suddenly became a low priority again compared to dealing with my new, more serious diagnosis. As you may already know, the epilepsy fiasco lasted for nearly a year before learning that I don't actually have epilepsy. If you are new to my blog, you can read my entries from 2010 to learn more about the misdiagnosis.

Once the epilepsy issue was behind me, I started to focus on other issues that had taken a backseat. A few months ago, I saw my gynecologist for my annual exam and told her that the lidocaine was not helpful. She suggested physical therapy as my next option and surgery as a last resort. I decided to go with physical therapy.

Even though going to physical therapy to fix my vagina sounded ridiculous, I had reached the point that I was willing to try it. My husband and I want children, and I'd like to try the old fashioned way before using any other (often expensive) methods to get pregnant. Of course, our having children also depends on my getting healthy enough to care for any, but I'm trying to be an optimist.

My next post will discuss what physical therapy for vulvodynia involves and how I am doing now.

Part I: The Pains of Vulvodynia

2011-03-17T11:37:00.006-05:00

Disclaimer/Warning: This post contains a frank discussion about specific female organs and sexual issues that some people may find too graphic, offensive, embarrassing, or personal. If you know me personally, you may feel awkward reading about these issues. Rest assured that if you are not embarrassed, I am not embarrassed. If you have any questions, feel free to ask.

Another problem that many women with ME/CFS have is vulvodynia -- or chronic vulvar pain (i.e., pain in the female nether regions). Not surprisingly, I have this condition.

First, some definitions from MedlinePlus, Mayo Clinic, and the University of Iowa. I picked these particular websites and definitions because they made things easy to understand. The terms I am defining are conditions I have, according to my gynecologist and the pelvic health center I visit for treatment.

Vulvodynia (vŭl′vō-din′ē-ă): chronic vulvar pain.

Vaginismus (ˌvædʒɪˈnɪzməs, -ˈnɪsməs): an involuntary spasm of the muscles surrounding the vagina. The spasms close the vagina.

Dyspareunia (ˌdis-pə-ˈrü-nē-ə, -nyə): painful intercourse.

Vulvar Vestibulitis (ves-tib′yū-lī′tis): a condition which causes redness and pain of the vestibule; an inflammation of this skin and the mucous secreting glands found in the skin.

I was diagnosed with all of these conditions by my gynecologist a little over a year ago, but it is only recently that I decided to really focus on these issues.

In hindsight, I have had vulvodynia and vaginismus as long as I can remember. As a teen, I could not use tampons because of the pain, and my annual gynecological exams have always been excruciating. I have had dyspareunia since becoming sexually active, and I only learned of my vulvar vestibulitis when my gynecologist observed inflammation and redness of unknown origin.

My husband and I have been married for almost six years, but we have never been able to have sex successfully. (My definition of successful sex would be sex with full penetration and without pain.) In fact, I could probably count on one hand the number of times per year we even attempt sex.

This issue is chock-full of spin-off issues. As you might imagine, the emotional toll is quite immense, as self-esteem, intimacy, and relationship issues flow abundantly. Of course, the physical toll is not a piece of cake either. The pain could be so terrible that it felt as though someone was pouring boiling water into my vagina while stabbing me with a serrated knife in the same place. I apologize for the graphic description, but I feel it is important for me to educate people who do not understand how debilitating this condition can be.

One of the main reasons I went so long without addressing my pain problems was because I was wrapped up with the rest of my health. In the grand scheme of things, being able to have sex seemed low on the list compared to all my other chronic health problems that reared their ugly heads on a daily basis.

The other reason things went on so long is because my previous gynecologist did not believe I had a real problem. I told her of my issues on every visit, but she just kept telling me to "go more slowly," "use more lubrication," and "stretch it out." She blamed my problems on my lack of sexual experience. I believed her, so I kept making an effort. Eventually, the pain became so excruciating that I stopped even trying.

I have to take a moment to mention what a wonderful husband I have. I suspect that there are not many young marriages that would survive chronic illness and no sex.

Fortunately for me, my previous gynecologist retired, and I got one who is very knowledgeable about pelvic pain. When I told my new gynecologist about my problems just over a year ago, she immediately diagnosed me and assured me that it was not my fault. She told me that I had a real medical condition and that it was not a matter of simply using more lubrication or "stretching it out." Imagine my relief to know it wasn't all in my head. (This situation reminded me of my CFS diagnosis.)

In my next post, I'll discuss the treatment options my gynecologist offered to me.

Gluten-Free Me?! And Casein, Too?

2011-03-16T10:47:00.002-05:00

Yet another issue that people with ME/CFS often battle is irritable bowel syndrome (IBS). I certainly have digestive issues. I've been diagnosed with IBS and acid reflux; I also have a range of nutritional deficiencies (vitamin D, iron, B2, CoQ10, glutathione) that I treat by taking supplements.

I alluded in a previous post that I am currently on an "extreme diet." I'm in the process of going gluten-free. For a cereal, bread, cracker, pasta, and dessert lover like me, going gluten-free is extreme.

Not long after I cut sugar from my diet, my physical therapist (I'll explain why I have a physical therapist in a future post) recommended that I see a nutritionist. The nutritionist the therapist recommended thought I had quite a few gluten intolerance symptoms. I told him that I had already been tested for celiac disease because my old gastroenterologist also thought I had celiac symptoms. In the absence of a positive celiac disease blood test, my gastroenterologist had diagnosed me with IBS.

The nutritionist was still convinced that I had a gluten sensitivity because of all my symptoms, so he suggested I go on a gluten-free diet. He said I could also get a genetic test done if I wanted, though he was pretty convinced it would come back positive for gluten sensitivity. After my epilepsy experience, I'm not inclined to believe what so-called experts tell me just because it seems to make sense. I decided to get the test.

I had the test done, and it took about three weeks to get the results. According to the results, I carry a duplicate set of genes that predispose me to gluten sensitivity. The company emphasizes that carrying a gluten sensitivity gene does not mean that a person will definitely develop gluten sensitivity or celiac; however, it does mean the person has tendencies toward those conditions.

The test was relatively inexpensive for a genetic test ($149 plus shipping, as of Feb 2011). The reason the company is able to provide lower costs is because they cut out the middleman. Patients order the test directly from the company (no doctor's orders needed), collect the genetic material (cheek swabs or stool collection) themselves, and mail it back to the company. They also do not accept insurance; however, they do provide a form that patients can submit to insurance companies. I submitted a claim to my insurance company, and they counted the payment toward my out-of-network deductible.

To be honest, I still hold a little bit of skepticism because this company's techniques are questioned by some "experts" in conventional medicine. Yet, if I'd listened to all the conventional medicine "experts" I've seen over the years, I might still be bedridden from my ME/CFS as I was eight years ago. I credit a combination of conventional medicine, alternative medicine, and thinking outside the box with getting me to where I am today -- a fairly high functioning person with ME/CFS. I digress.

The nutritionist also said that going on a gluten-free diet helps a lot of people feel better even if they are not technically gluten-intolerant or gluten-sensitive. I actually started on my gluten-free diet before getting my test results, so it has been a few weeks. I figured I had nothing to lose. If I felt better, it really didn't matter what the results said. If there was no change in how I felt, I could go back to my gluten ways.

I am not yet 100% gluten free, but I have cut out cereal, bread, crackers, pasta, and anything else that is an obvious offender. I have not yet cut out foods with hidden gluten (e.g., certain sauces, dressings, and soups), but that will be my next step. Since I am making a life-long change, I am doing it in phases so that I can be as compliant as possible.

I must admit that I seem to be feeling somewhat better, though I'm told it can takes months of being 100% gluten free before a person notices any major results. As an added bonus, cutting the heavy-hitter gluten products (a.k.a. big-time carbs) in addition to sugars has helped me to lose a total of 10 pounds in about five weeks with diet alone (i.e., no exercise).

Based on my symptoms, the nutritionist also thinks I have a milk protein intolerance -- more specifically a casein intolerance. I have stopped drinking milk (I would occasionally add milk to cereal or oatmeal even though I am lactose intolerant!), eating yogurt, and having cheese as a snack. I am not casein free yet because I still eat creamy dressings and other products with milk-proteins, but cutting out the biggest offenders seems to be helping. At some point, I plan to get tested for casein intolerance. I'm the kind of person that needs multiple sources of evidence before I buy into something.

As I mentioned before, I am making changes to my diet in phases so that I have time to adjust before the next big elimination. Wish me luck!

Oh, if you're wondering what company I used, it was EnteroLab. I have no connection to this lab, so I don't know if they ship internationally.

P.S. I just found this online discussion about EnteroLab and the validity of their results. It convinced me even more to keep up my gluten-free endeavor.

Helping Others

2011-03-15T09:22:00.001-05:00

Disasters like the one in Japan remind me that I am fortunate to have a food, water, and shelter. No matter how challenging things get for me, I am still in a position to help others. Because I am not able to volunteer or give blood, I donate money. Even $10 can make a difference.

Here are some organizations that help people in need (the US organizations have international counterparts):

American Red Cross: http://www.redcross.org/
Doctors Without Borders: http://www.doctorswithoutborders.org/
Oxfam America: http://www.oxfamamerica.org/
UNICEF: http://www.unicef.org/

In addition to helping people in Japan, these organizations are working on relief efforts in North Africa and the Middle East, Haiti, and other projects throughout the world. If you prefer to help those in need in your own country, there are plenty of local charities that accept donations.

Before you donate any money, make sure you are donating to a legitimate organization. Please do your homework. Watch out for fake charities. Here's an article that gives advice about making donations: "Donate to Japan tsunami victims, not scammers: How to avoid frauds set up to snare charitable dollars aimed at Japan." Even though the article is directed at Japan programs, the information can apply to any charity.

PCOS and Pre-Diabetes

2011-03-14T10:35:00.002-05:00

After more than one blood test result came back with high cortisol levels months after I'd stopped taking steroids (to treat my allergic reaction to an epilepsy medication), I decided to see an endocrinologist. I still had some Cushing's syndrome-like symptoms -- particularly excessive weight gain in my stomach area -- so I wanted to find out if I had some sort of underlying endocrine problem.

I saw an endocrinologist in January. She took my meidcal history and ordered a full blood work-up and 24 hour urine collection. I was surprised by the results.

My cortisol levels were completely normal. However, based on my Hemoglobin A1C result of 6.4 (standard range is 4.0 - 5.6; higher than 6.5 means diabetes), the endocrinologist diagnosed me with prediabetes. She said is was a result of my Polycystic Ovary Syndrome. Additionally, my maternal grandmother developed Type 2 diabetes, so there is also a genetic component at play.

The reason this particular diagnosis took me by surprise is because I've had my glucose levels tested before, but the levels have always been normal (in the 80's).

It is well documented that prednisone raises blood sugar levels. I believe that the high levels of steroids I took for so long triggered my insulin resistence. The doctor put me on metformin, a diabetes medication which is also commonly prescribed for people with PCOS.

About a month after I started taking metformin, I had not lost any weight (something I was hoping for). I decided I needed to take more "drastic" actions, so I cut out sugar from my diet. I stopped eating sweetened food and drinks -- that is, desserts, sweetened snacks, sodas, and other drinks with sugar added (like sport drinks).

I really wanted to lose the extra weight I had gained over the past year. The first couple of weeks were hard, but I'm pretty much used to it now. I think what made the diet easier to stick with was that I did not cut out any other foods.

What's amazing is that just by cutting out all sugar products, I lost 4 pounds in the first week.

Since then, I've lost another 6 pounds (that makes a total of 10 pounds so far!). However, I've made a more serious diet change. I'll talk about my new extreme diet in a future post.

Note added at 3:15pm on March 14: It's interesting how many women with ME/CFS have PCOS or other female issues. I wonder what the connection is...

A Recap of 2010

2011-03-13T12:32:00.001-05:00

So much has happened in 2011 that I wish I'd been blogging this whole time. Better late than never, I suppose!

First, a recap.

If you read my blog last year, you may remember that I started the year on short term disability as a result of complications from a lumbar puncture. While I was on short term disability, I was MISdiagnosed with epilepsy and was put on a series of anticonvulsant drugs that did a number on my body.

In addition to weight gain, hair loss, extreme weakness, tremors, mood changes, headaches, nausea, dizziness, and other truly unpleasant symptoms, in May I experienced anaphylaxis due to one of the medications and ended up being rushed by ambulance to an emergency room. I thought I might die. I was administered high doses of epinephrine, antihistamines, and steroids. That event began my second period of short term disability in 2010.

Because of the insanely high amounts of steroids that had to be pumped into my system to counteract my body's immune system reaction, I suffered from Cushing's syndrome symptoms. I suffered from high cortisol levels and had awful weight gain particularly around my middle (I looked a few months pregnant), face, back, neck, and clavicle area. My body was a mess, yet I was put on another anticonvulsant for my MISdiagnosed epilepsy.

I spent much of the rest of 2010 struggling with my Cushing's syndrome symptoms while on anticonvulsants. I became so weak that I felt I'd had a major setback in my ME/CFS. My life was miserable. Due to my worsening health, I was forced to change jobs because my job at the time was becoming too physically demanding.

I'm sure I'm leaving things out, but I can honestly say that 2010 was one of my most challenging years ever.

I don't mean to end this post on such a downer, but I wanted to recap before I wrote about what has happened since. I will post again this week.

New Year, New Focus

2011-02-13T22:54:00.004-06:00

Sorry about the long silence! I thought I'd write a quick post so that people knew I was still around in cyberworld.

I feel as though 2010 was a loss in terms of health. I was so focused on my epilepsy (mis)diagnosis and all the chaos it caused that I let everything else go -- much to my detriment.

This year I have a new focus. Well, maybe it's not a new focus -- perhaps, it's a re-focus. I am aggressively examining each of my symptoms to try to treat them more effectively, and I intend to work on other issues I have put on the back burner. I am also working to modify my diet to be healthier.

So far, however, I've had to spend the beginning of 2011 working on reversing the 2010 damage to my body. The epilepsy medications and high-dose steroids (due to the anaphylaxis in May 2010) did a number on me.

I gained considerable weight from the steroids and for a while had Cushings Syndrome symptoms. Most of those issues (like face swelling, acne, fat pads on neck and back) have decreased with time; however, I still carry excess weight in my stomach area. I look like I'm pregnant, even though I'm not.

I'm too tired to write more, but I will give more details in a future post.

A (Belated) Merry Christmas to all who celebrate! Happy New Year! Happy Valentine's Day!

Misdiagnosis and Letter to Old Neurologist

2010-12-23T10:52:00.000-06:00

A few people have asked me how I was even diagnosed with epilepsy to begin with. I am still trying to figure out the full answer to this question. However, I think the main reason is because the general neurologist that misdiagnosed me misread my (multiple) EEGs. He read my normal EEGs as having extensive seizure activity.

Why the confusion?

According to the epilepsy specialist I eventually saw, my EEG results showed that I was drowsy during the tests. People who are drowsy have different brain waves than people who are wide awake. If you've ever felt that your brain was asleep, it probably was! Unfortunately, the general neurologist who misdiagnosed me incorrectly interpreted the drowsy brain waves as seizure activity.

To be fair, the general neurologist did ask me about my medical history before officially (mis)diagnosing me with epilepsy. To be equally fair, I answered his questions as accurately as possible. I explained my entire medical history (asthma, allergies, eczema, bruxism, IBS, PCOS, sleep apnea, migraines, tinnitus, thalassemia minor, etc.). I also told him about my ME/CFS, including the neurological problems associated with it (brain fog, memory problems, attention problems, insomnia, etc.). I can only assume he believed my neurological symptoms to be from seizures. How wrong he was.

Following is an edited version of the letter I sent to the neurologist that misdiagnosed me with epilepsy. As I mentioned in my last post, I don't expect a response; however, I think the doctor needs to understand the danger of incorrectly diagnosing someone.

----------------------

Dear Dr. S,

As you have probably already learned, Dr. D, epileptologist at the C Epilepsy Center, has examined my case. After reviewing my medical history and EEG results (three from your office and one ordered by Dr. D), he has determined that I do not have epilepsy.

After living with the epilepsy diagnosis and having been on antiepileptic drugs for nearly a year (and suffering from side effects, including an anaphylactic reaction to Trileptal), this news came as quite a shock. While I am thrilled and relieved that I do not have epilepsy, I am trying to understand how I could have been so wrongly diagnosed. According to Dr. D, all of my EEG results appeared normal and my medical history did not indicate epilepsy. He asked me why an EEG was ordered in the first place.

I have since stopped taking Keppra and Topamax. Many of the symptoms I was complaining about -- extreme fatigue and weakness, difficulty going up stairs, twitching, difficulty thinking -- have improved dramatically. It appears that medication side-effects were the cause of many of my problems.

Because of the diagnosis, I was prescribed unwarranted medications, had unnecessary medical appointments and tests, experienced a life-threatening event resulting in hospitalization, and missed long periods of work. My husband also paid a price; he took off work on multiple occasions to drive me to medical appointments and had to undertake additional responsibilities at home because I was too exhausted to help. All of these events took a physical, mental, and financial toll.

I am writing because I want you to understand that this misdiagnosis greatly disrupted every aspect of my life for the past year. I shudder to think how much more suffering I would have undergone had I not referred myself to an epileptologist. I hope you will consider my case a learning experience, as I do not want others to endure what I have been through. Perhaps, taking additional classes on reading EEG results or referring possible epilepsy patients to a specialist for a second opinion would be a good idea. Familiarizing yourself with medication side effects might also be beneficial. Patients would respect you more for proactively looking out for their well-being.

I would be grateful for any response you might have regarding my misdiagnosis. I am trying to comprehend the last year.

I Don't Have Epilepsy

2010-12-19T21:40:00.000-06:00

The title sums it up.

I apologize for the delay in my post. The past few weeks have been quite an emotional roller coaster, and the past year has been one of the most challenging of my life. Obviously, not having epilepsy is great news because it's one less thing for me to worry about, yet some of the happiness I should be feeling has been overshadowed by the anger and sadness I have surrounding the misdiagnosis. I do not understand how the neurologist that diagnosed me with epilepsy could have been so wrong. I only went to see him for migraines! Epilepsy wasn't even a consideration.

I am not exactly sure how to explain what's going on in my head, but I'll try.

I was diagnosed with epilepsy in December 2009 and was immediately put on horrible anticonvulsant medications that only someone who has taken them can understand. I suffered the consequences of the epilepsy diagnosis from December 2009 through November 2010, when it was finally determined that I do not have epilepsy.

Medication side effects ranged from annoying and unpleasant to horrific and life-threatening. Some of the side effects were magnifications of symptoms I already experience from the ME/CFS, while others were new symptoms altogether. Medication side effects included extreme fatigue and weakness, difficulty going up stairs, twitching, trouble thinking and processing information, mood changes, hormone imbalances, mild rashes, swollen hands and feet, exacerbation of RLS, worsening insomnia, tremors, uncontrollable eye movements, nausea, headaches, dizziness, severe memory problems, hair loss, and anaphylaxis.

The last experience (anaphylaxis to Keppra) was the most traumatic. I was home alone when it happened and had to call 911 for myself. I still have flashbacks of the event when I see ambulances, hear sirens, or see the hospital I was taken to. I sometimes wonder what would have happened had I not called for help. Would I have suffered from more serious complications, or might I have died?

Even after I stopped the medication that caused the allergic reaction, my body stayed in a highly allergic state for weeks after the event. Additionally, I strongly reacted to the steroids I was put on – developing Cushing's Syndrome-like symptoms, including swelling of my face, fat pads on my shoulders and back, excess fat around my middle, weight gain, acne, and chronic yeast infections. Though I have not taken any steroids for several months, I still have some of these symptoms.

I went on Short Term Disability twice as a direct result of the epilepsy medications. The first time I took disability for epilepsy I was already on disability for another reason (poor reaction to a lumbar puncture), but the neurologist recommended that I extend it for about a month so that I could adjust to my new medications. The second time was because of my allergic/anaphylactic reaction to Trileptal.

Technically, I was not supposed to drive anymore because of the epilepsy diagnosis. Because I never lost consciousness, I made the decision to continue to drive myself to and from work (which is about 5 miles away). I stopped driving anywhere else, so my husband had to drive me to medical appointments and anywhere else I needed to go.

Towards the end of October, however, I made the decision to stop driving altogether. It was my understanding that I was still having seizures (according to my neurologist), even though I'd never once lost consciousness. I didn't like the idea of breaking the law (people with uncontrolled epilepsy are not supposed to drive in my state) or putting others at risk by driving with epilepsy. I started to ask around at work to find out if anyone lived close enough that they would be willing to drive me to and from work. One of my coworkers said that maybe we could organize some sort of carpool rotation where different people would drive me on different days of the week. If I had not seen the epilepsy specialist who determined that I do not have epilepsy, I would not be driving today.

Epilepsy is a life-long condition that affects every aspect of one's life. The neurologist that diagnosed me told me that I would be on medications for the rest of my life. He said that if I hadn't started medications, my seizures would likely progress to tonic clonic seizures (aka grand mal) and possibly permanent memory loss. I was scared about getting pregnant while taking epilepsy medications because of the terrible effects most of the medications can have on a fetus. I had a medical ID bracelet that would inform emergency medical personnel of my epilepsy diagnosis and allergy to Trileptal. I was terrified that the next pill I took would put me in the hospital again or kill me.

It's been said that if you really want to understand someone, you should walk a mile in their shoes. Well, I've walked about 10,000 miles, and I can tell you that epilepsy is not something to be taken lightly. I wrote a letter to the neurologist that misdiagnosed me to ask him how he could have misdiagnosed me. I am not expecting a response, but I think it is good for him to understand the consequences of diagnosing (or misdiagnosing) someone with epilepsy. (I will post a copy of the letter later. I first have to edit it for privacy reasons.)

This whole experience has made me a stronger advocate for my own health needs. I had doubts about the diagnosis to begin with, but it took a life-threatening emergency and nearly a year's worth of suffering for me to seek a second opinion from a specialist. From now on, if anyone decides to diagnose me with something serious, I will be seeking a second opinion from a specialist -- no matter how obvious the diagnosis seems or how expensive a second opinion ends up being (because it might be less expensive in the long run).

I now feel the need to do some research on the misdiagnosis of epilepsy. I want to know how common misdiagnosis is because I am concerned that my old neurologist might be doing this with other patients. If he read my normal EEG's as being completely abnormal with lots of seizure activity, how can anyone trust him to be reading other patients' EEG's correctly?

Sorry about the long post, but I've had a lot on my mind. Writing about it is cathartic.

EEG Tomorrow

2010-11-11T21:28:00.000-06:00

Tomorrow I have the EEG the epilepsy specialist (a.k.a. epileptologist...I think) ordered for me. I'm looking forward to this latest EEG because I'm hoping it will help give me some sort of definite answers.

Because I want the good doctor to have as much information as possible before he makes a definitive diagnosis either way, I called my old neurologist's office earlier this week and asked if they would burn a CD of my previous three EEG's and mail it to me or to my new neuro. (If you'll recall, paper printouts of my previous EEG's were sent over to the epilepsy clinic rather than electronic versions.) They agreed to mail it to me (though I'm not sure why they didn't want to mail it directly to the epilepsy center even though I'd already signed a release form...). I should be receiving the CD in the mail any day now.

My hope is that with four clear EEG's (three old ones plus the one tomorrow), the epilepsy specialist will have a much better picture of what's going on in my head -- literally!

In other news, I've been tapering off one of my epilepsy medications, Keppra. I've been on a lower dose for over a week now, and I am starting to feel a bit better. While on higher doses of the medication, I was having the worst brain fog ever (even worse than normal ME/CFS brain fog), terrible memory issues ( I would forget what I was doing or saying in the middle of doing or saying it), horrible weakness (getting up stairs was worse than ever), head tremors, eye rolling, and more. I've also suspected that the Keppra was causing my hair loss and exacerbating my restless leg syndrome.

I still have brain fog, memory issues, and weakness, but they seem to be improving bit by bit. The head tremors and eye rolling have nearly stopped, my RLS does not seem to be quite as intense, and my mood has improved. On the down side, I've had terrible headaches since I've been on the reduced dose. I've gotten headaches every time I've started a new epilepsy medication or increased a dosage, so I suppose it only makes sense to have the headaches as I'm lowering the dosage.

I can't wait to be completely off the Keppra. I've suspected for a while that this particular medication was causing side effects, but my old neurologist thought I should stay on the medication (even though I kept complaining to him).

From now on, I will trust my instincts and be a stronger advocate for myself.

I can't remember if I've already mentioned this in a previous post, but ever since I started the epilepsy medications nearly a year ago (December 2009, in fact), my triglyceride levels have been extra high. More recently, I learned that my cortisol levels are high as well. My body demonstrated the effects of having high triglyceride and cortisol levels in a textbook fashion -- I gained quite a bit of weight, mostly around my middle. I looked pregnant without being pregnant. At my worst, I could no longer fit into most of my work slacks; however, I refused to buy new clothes because I didn't want to accept my new rounded shape.

To try and combat these issues, I started taking omega-3 krill oil -- which has no fishy aftertaste -- for the high triglycerides. I was taking fish oil for a while, but I got tired of the fishy aftertaste -- which I got even from the supplements marketed as being "odorless." Then I resumed taking phosphatidylserine complex (which I had been taking for the ME/CFS but stopped when my list of drugs and supplements became overwhelming) for the high cortisol.

I think the supplements must be helping, because I can now fit into more of my clothes without the assistance of my really uncomfortable waist cincher. I have not had my triglycerides or cortisol retested, so my evidence at this point is purely anecdotal. I'll take it, though. Fitting into the right sized clothes is good for a woman's ego.

I won't get my EEG results until the next week or so, but I'll be sure to post an update.

It Might Not Be Epilepsy?!

2010-11-02T20:50:00.001-05:00

I might not have epilepsy.

Everything has happened so fast that I'm still processing the recent events.

I saw the epilepsy specialist on Monday. My mom came into town to accompany me since my husband was unavailable that day. After reviewing all the medical records I had sent over to the epilepsy center (including previous EEG's), interviewing me, and giving me a neurological exam, the doctor said that he did not think I had epilepsy.

What?! I looked at the neurologist in shock.

He said, "This is good news! You don't want to have epilepsy." I suppose he was expecting me to cheer or at least smile.

I couldn't smile. All I could think about was how the past year of my life was one of the worst of my life. Ever since starting epilepsy medications, I have felt sicker than ever. I nearly died in May from one of the medications. I'm losing my hair, my entire body is weaker than ever, my memory is worse than ever, and I have all sorts of problems I never had before.

All of the suffering and all of the pain over the last eleven months have been for nothing. I suffered through horrific side effects and put my body through tremendous stress for nothing. I almost died for nothing.

I wanted to cry.

I was suddenly angry at my previous neurologist. I asked the epilepsy specialist how I could have been so wrongly misdiagnosed. How could this have happened? How could my previous neurologist have been so wrong? Of course, the epilepsy specialist couldn't really give me an answer. I said that my old neurologist needed to know that he was wrong and asked if the specialist could send over a copy of his findings.

I am still going to have another EEG that the epilepsy specialist is going to review just to be sure. The EEG results that were sent over by my previous neurologist's office were a bit difficult to read because they were printed out on paper and condensed, rather than sent on a CD or DVD which would have made the spikes and waves easier to interpret.

At this point, I'm not sure what to think or how to feel. I think I am mostly in shock. I don't really feel anything.

I'm not going to get my hopes up just yet. I'm too afraid to believe that I don't have epilepsy just in case I actually do. At the same time, if I don't have epilepsy, I'm back at square one -- trying to figure out what to do to feel healthy. For a while, I had hoped that the epilepsy medications would "fix" everything that was wrong with me. Unfortunately, the medications seem to have done the very opposite and hurt me instead.

On the upside, I am now tapering off one of my epilepsy medications, Keppra. The epilepsy specialist believes that it is the source of many of my recent problems. I am hoping that the hair loss, extreme weakness, high cortisol levels, high triglycerides, and even some of my neurological issues will improve with time.

There is so much more the epilepsy specialist said, but I am too tired and overwhelmed to write about it.

New Neurologist Appt on Monday!

2010-10-30T10:34:00.005-05:00

I am very excited that I was able to get an appointment with my new neurologist for Monday.

My new doc is an epilepsy specialist at an epilepsy center. On the recommendation of my local Epilepsy Foundation, I called back in September to try to get an appointment, but the earliest they could schedule me was for December. Though frustrating that I couldn't get in sooner, I took the delayed appointment as a good sign because so many people are clamoring to get in to see him.

On a whim I called the epilepsy center last week to ask if there was any way they could call me in for an earlier appointment if anyone happened to cancel. The woman I spoke with told me she'd be happy to put me on their list of people to call.

Well, someone cancelled their Monday appointment! And the best part is that I got the call on my birthday. :) What a great birthday present.

I have high hopes about this appointment (perhaps, too high?) because I have been experiencing growing disappointment with my current neurologist. He is not an epilepsy specialist and has more recently not been treating me with much compassion. My husband who usually accompanies me to my neuro appointments was shocked at how rudely the old neuro treated me at my last appointment.

I've been on too many epilepsy medications to count, most of which have caused (or are causing terrible side effects). I am losing my hair, my hormones are off balance, I can barely get up a flight of stairs (it's worse than usual these days), and I feel extremely weak all the way around.

The doctor didn't seem to think these things were that big of a deal. He told me to go find an endocrinologist to deal with my hormones because my case was "too complicated" for him to deal with. He then ordered a new EEG and some blood tests to try to figure out what's causing my weakness, but he basically brushed me off. In his defense, maybe he was having a bad day.

(Unfortunately, the EEG showed that I am still having seizures, and the blood tests showed abnormally high morning cortisol levels. The weirdest thing is that I still can't tell when I'm having seizures for the most part because I simply do not lose consciousness. I have plenty of brain fog, though. Did I ever mention that my old neuro said I probably don't have absence seizures? He now thinks they're simple partial.)

Either way, I'm happy to be going to an epilepsy specialist. I'll keep you updated.

A Fresh Start (for my blog)

2010-10-12T21:21:00.005-05:00

I've been feeling particularly frustrated with doctors (two, in particular) the past couple of days, so I thought I'd cheer myself up by sprucing up my blog. Unfortunately, my brain fog is pretty thick right now, so I've made a few mistakes.

In trying to rearrange some the layout of my blog, I accidentally deleted some things I didn't mean to delete. If I deleted your blog (or if you blog about ME/CFS or epilepsy and it's not listed), please respond to this post with your blog address.

If you notice anything else that's missing, just let me know. Thanks!

I Think I've Won the Genetic Lottery

2010-10-10T21:47:00.004-05:00

I feel like I'm watching my own life pass me by. My last post was in July. Suddenly it's October, and I'm about to turn 32.

I'm not a statistician, but the odds of having both CFIDS and epilepsy have got to be slim to none. Add in the fact that I have some not-so-common conditions (like thalassemia minor and unusual drug allergies) in addition to a combination of fairly common conditions (like PCOS and asthma), I am pretty sure it's safe to say I'm a medical oddity.

I think I must have won the genetic lottery.

This past year has been one of the most challenging of my life. If you're a regular reader, you'll notice I've modified the title of my blog. I've added my epilepsy diagnosis. The past year has been consumed with the exhausting task of trying (and failing) to find the correct combination of medications that works for me.

So far, no success.

I think that part of what is making everything so complicated is my CFIDS. My immune system simply does not seem to function correctly, so I don't react to many medications the way I'm supposed to. It's my dumb immune system that almost got me killed in May when I had an anaphylactic reaction to Trileptal -- an epilepsy medication. I'm still not ready to write about the entire experience, but you can probably figure out it was traumatic for me.

More recently, I reached toxic levels of one of the epilepsy medications I'm on. I started feeling extremely sick (more than usual) every day and would often wake up with my eyes rolling around with my head shaking. It was not pretty. We've backed off that dose, and I'm doing a little better (I think), but I'm still exhausted.

I have so much to say, but so little mental energy. Maybe I'll write another post in December...though I hope to write something sooner! ;)

How Can It Possibly be July?

2010-07-14T21:16:00.001-05:00

I didn't exactly mean to take this long of a break from blogging... Thanks for all your patience (and hello to my new readers)!

So much has happened -- both good and bad -- since my last post. Oddly, most everything seems to involve large sums of money. Here are the highlights:

My old car died, so I had to get a "new" used one. Where I live public transportation leaves much to be desired; thus,a car is a necessity. I have to admit, though, I was not that sorry to go shopping for a newer model. It was actually pretty fun. Unfortunately, we had to take out a loan because we didn't want to spend the money we had saved for our home down payment (see below). Fortunately, we got a good interest rate and hope to pay off this loan by the end of the year.
Of course, not long after we plopped down a bunch of money for a car, a bunch of unexpected expenses popped up (it's funny how things often seem to work out that way). I started having uncomfortable tremors due to the antiseizure medicine I had started (Depakote ER). Writing and other fine movements became difficult. I stopped that medicine, started having even more seizures (simple partial), then had to try out some different meds. I had too many doctor appointments to count. Prescriptions and medical appointments -- even with insurance -- can get very expensive when you have so many of them.
While all of the above was going on, we were working on trying to buy a home...something we'd been saving up for (the down payment, that is)for a few years. We saw quite a few houses before we found a "dream" home that was within our budget. It's got two bedrooms and two and a half baths. There are some minor problems and cosmetic issues we've been slowly working to fix, but it's been amazing to call this place ours.
Not long after we closed on our home and before we actually moved in, I had a terrible reaction to the antiseizure medication I was on at the time (Trileptal). The reaction I had was anaphylaxis. I was alone at the time and had to call 911 for myself. I was taken by ambulance to an emergency room and given life-saving treatment. Because the reaction was so severe, they admitted me into the hospital to monitor my breathing. Though life-threatening, anaphylaxis has a fast recovery time when caught and treated early enough. I was released from the hospital the next evening. I ended up on short-term disability (again) for about a month. I'll write about this experience in detail in another post. I was pretty traumatized by the event.
Most recently (this month, in fact), I started a new job. It has better hours, better benefits, better pay, and requires less energy. I'm sure you can understand why I accepted the position! It was tough leaving my old job after five years, but the timing felt right...especially after the rough year I've had. Having gone on short-term disability twice in one year was not my idea of a good time; however, I think it was my body's way of telling me to give it a break.

Anyway, I need to get to bed.

Too Tired to Blog

2010-02-28T22:34:00.000-06:00

I've been so mentally and physically tired the last few months that I haven't been very good about blogging.

There have been so many times when I've thought something would be a great topic to blog about, but I was simply too tired to write. I hope to blog more as I begin to feel better.

I can't believe March starts tomorrow. Tempus fugit.

Back in the Saddle Again...I Think...

2010-02-14T12:52:00.000-06:00

Hello everyone!

I'm finally back at work. Actually, I've been back since the beginning of this month, but I just haven't had the mental strength to write a post.

The last few months have been some of the most physically exhausting and emotionally draining months I've had in a long time:

Lumbar puncture. Spinal fluid leak. Blood patch. Severe exacerbation of my CFIDS. Nonstop fevers. Nausea. Out of work on disability. Increased frequency and intensity of headaches. Chronic migraines. Insomnia. Memory problems. Epilepsy diagnosis. Out of work even longer. New medications for epilepsy. Side effects. Vulvar vestibulitis diagnosis (female problems). Medical expenses. Etc., etc., etc.

Because everything happened in such a short period of time, I started to feel sorry for myself. I just couldn't get a break! Then after the earthquake in Haiti happened, I felt guilty for feeling sorry for myself because I thought I should be grateful that I had food, water, and shelter. Instead, I felt even worse because I was feeling terrible for myself and the people of Haiti. I was having a pity party.

On the upside, I'm starting to feel better.

Physically, I've improved quite a bit since the lumbar puncture in November. My CFIDS seems to be almost back to its previous state. Of course, I'd rather it be gone altogether, but I'm glad I can function again. I'm also sleeping better, and my memory has improved. I wonder how much of my memory improvement has to do with sleeping better and how much has to do with the epilepsy medications.

I'm doing better psychologically, too. I've had some time to process all that's happened and adjust to my new normal. The improvement in my health and improved sleep have undoubtedly helped my mood. I'm physically weaker than I was before, and I'm still dealing with some unpleasant side effects from my new meds, but being back at work among people I like has done wonders for my mood. It's also given me back a sense of normalcy.

This post has taken a lot out of me, so that's all for now.

Happy Valentine's Day!

Happy New Year!

2010-01-11T21:03:00.005-06:00

I haven't been blogging much lately because I've been focusing on my health, but I thought I'd come out of my cave and say hello.

I've had a rough time adjusting to the new antiseizure medications (feeling sleepy, dizziness, headaches, nausea, etc.); however, I'm hanging in there!

My neurologist knows that people with CFIDS are often more sensitive to medications than other people (and he knows that I am particularly sensitive to various medications), so he started me on lower doses of the antiseizure meds. This technique would allow more time for my body to adjust to the medications.

I am now on the maintenance doses of both antiseizure medications (as of Friday). The side effects of this level are starting to subside...I think. Well, at least they seem to be better today than they were yesterday.

On the upside, I've FINALLY been sleeping better thanks to a combination of the antiseizure medications and Ambien CR. My memory is starting to improve, and I'm thinking more clearly. Hooray!

I have been doing some digging, and I've discovered a few bits of interesting information related to my new epilepsy diagnosis (absence seizures).

First, I looked up absence seizures on the internet, and found that absence seizures are most common in children and usually do not start in adulthood (though my body has not followed the "getting sick" rules for years).

I also found multiple examples of what absence seizure activity looks like on an EEG (if you click on the above link and scroll down, you can see an example). Unfortunately, my EEG looks very much like the example EEGs I found. What was most striking to me was the following phrase on the Epilepsy Foundation website regarding absence seizures: "the absence attack is always associated with the strikingly typical EEG abnormality of spike and slow wave discharges, usually at a frequency of 3Hz."

Second, not long after my diagnosis a few weeks ago I remembered that I'd had a sleep study done in 2007. Part of a sleep study involves a night-long EEG. Conveniently, I had an appointment with my regular doctor just after I remembered this interesting tidbit and made sure to ask her about my sleep study results (which she had in her possession as part of my medical record).

Long story short: It turns out that the sleep lab did not mention any abnormalities in my EEG. (I should have known this would be the case, since I obviously would have been notified at that time if there had been any EEG abnormalities.)

I have come up with a few different scenarios as a result of all this information: (1) I developed epilepsy recently, (2) I do not have epilepsy and my recent EEG was a fluke, (3) I have had epilepsy since childhood but the first EEG did not catch seizure activity, (4) the seizures are a new symptom of my CFIDS.

I don't know which scenario is correct, but I'm sure I'll learn in time. I just want to be well!

Today's Activities: home. Today's Most Annoying Symptoms: headache, sore throat, upper back pain, air hunger.

Mood (10 is best): 5
Energy Range (10 is best): 1-3
Physical Discomfort (10 is worst): 6

P.S. Happy New Year!

Seriously?! Epilepsy?!

2009-12-25T09:10:00.001-06:00

I wrote this post on Wednesday, December 23, but it's taken me some time to get up the nerve to publish this post because of the life-changing implications and complications. I finally made the decision to make this post public because I made a commitment to share all my health-related experiences when I started this blog.

Today my husband and I went to the neurologist to get my MRI, MRA, EEG, and blood test results. I had the tests done earlier this month, but today was the earliest I could get in to see him for the results (he's got a full patient load because he's considered a top neurologist in the area, so it's difficult to get in quickly).

I fully expected the tests to come out normal. After all, they were only done just to be thorough; my only complaint had been regular headaches and increasingly frequent migraines. The good news is that my MRI and MRA results are entirely normal. Physically, my brain and brain arteries look good.

The crazy news is that my EEG was NOT normal. In fact, it was quite abnormal, indicating multiple "subclinical seizures."

WHAT?!

The good doc spent about an hour (AN HOUR!) with us asking me all kinds of health-related questions and answering my questions. Long story short, I've been diagnosed with "primary generalized absence epilepsy. Based on answers to his questions and my EEG results, he thinks I've had (or have) "absence seizures" (a.k.a. petit mal seizures).

The doctor has put me on antiseizure medications to see if they help my memory, concentration, sleep, and EEG results. The meds are depakote and neurontin.

Interestingly, depakote is sometimes prescribed to prevent migraines and neurontin is sometimes prescribed off-label for fibromyalgia. The depakote may help the frequency of my migraine symptoms, and the neurontin may help the new and unexplained pain I've been having in my upper back, neck, and arms.

The doctor is also recommending that I extend my Short Term Disability until I have been stabilized on my new medications.

Seriously?!

The doctor showed me an excerpt of my EEG results (the full thing is really long) and said he thought I'd be able to see the abnormal parts without him pointing them out. He was right. I immediately pointed to the wave areas of larger spikes.

Things are still sinking in. Only after I left the doctor's office did more questions come to mind like:

Are you sure?
What other reasons could cause an abnormal EEG?
When can I have another EEG just to be sure?
Exactly how many "subclinical seizures" did I have during the test?
Is this condition for the rest of my life, or is it temporary?

After doing some research on epilepsy and absence seizures on the internet I came up with a couple more questions including:

Most of the information I've read indicate that absence seizures are most common in children. Why would I develop this as an adult? or have I had it since childhood and it's just gone undiagnosed?
Are you sure?

The epilepsy diagnosis does not explain all my CFIDS symptoms, so it looks like I'm just "lucky" and happen to have both conditions (in addition to all my other conditions) unless we can prove otherwise. Yippee...

I still don't entirely believe I have epilepsy at this point. I'm not sure if I am in denial or if I just have a healthy skepticism. As far as I know (and based on observations by husband), I have not had any clinical seizures. I don't remember having any seizures (but, ironically, not remembering having a seizure is one of the symptoms of absence seizures).

I am going forward with treatment nonetheless because the EEG clearly indicates some sort of abnormality. That is something I can't argue. If my neurological symptoms improve, I might be more inclined to believe the diagnosis.

I've got an appointment with my regular doc on Monday, and I'm going to ask her all the questions I should have asked my neurologist while I was there. I'm also going to ask if it's worth it to get a second opinion or if I should wait and see if I make any improvements on the new meds. My next neurology appointment is in a month.

It's all still sinking in...

P.S. Merry Christmas to all who celebrate!

AAAAAAARGH, I NEED SLEEP!!!

2009-12-18T18:48:00.002-06:00

My sleep-wake pattern is so disturbed at this point that I'm getting a little loopy and am craving even just one night of good sleep. This problem has gone on more than two weeks. I'm sure this lack of good sleep is NOT helping my health. I'm running a fever of 100.0 today.

The Lunesta (which I took for a few days) did not work for me. It helped me fall asleep, but I kept waking up throughout the night. After the Lunesta I was prescribed a high dose (30 mg) of Restoril, which didn't help after four nights of taking it. It did not help me fall asleep, and I ended up waking up "wide awake" around 4:30 or 5:00am after having fallen asleep around midnight.

If you're keeping track, so far the following medications have NOT helped me sleep:

Trazodone (caused nasal passages to close)
Soma, prescribed for tension headaches (kept me up for 36 hours!)
Valium, prescribed for tension headaches (made me wake up every one to two hours)
Lunesta (did not help me stay asleep)
Restoril (did not help me fall or stay asleep)

The newest sleep med I'm going to try is Ambien CR. My first dose is tonight.

I've had trouble sleeping in the past, but my sleep patterns got worse after the lumbar puncture and MUCH WORSE after the Soma incident. Compared to now, my past insomnia was nothing. I used to be able to take over the counter supplements or meds to help me sleep. However, my brain chemicals and internal clock are so crazy now that nothing (including natural remedies, good sleep hygiene, and prescription meds) so far has worked.

In other news...

I received a letter yesterday that let me know my Short Term Disability claim was approved through November 30... but they now need all my medical records including all test results from every treating physician from November 11 through present (before they just needed info from one doctor).
I went to my regular doctor on Monday, and she reiterated that I should continue to stay out of work at least until January.
My doc also prescribed seven days of the antiviral medicationValcyte for me because the blister on my throat appeared viral and not bacterial. She also ordered new EBV and HHV-6 tests to see if my levels are high enough for me to take Valcyte for a longer period. There is some research that shows some people with CFIDS improve on Valcyte.
Turns out the area of my blood patch was infected, which is why it hadn't healed after over a month. My doc prescribed a topical antibiotic, and it has already helped a great deal.
I will be seeing a pulmonary specialist for the "air hunger" I recently started experiencing; however, I've read that this symptom is not uncommon in people with CFIDS, so I doubt the doctor will find anything wrong with my lungs. My breathing tests at the place that treats my asthma already confirmed my lungs are clear.
The Cognitive Behavioral Therapist told me she didn't think I needed regular counseling at this point because I am not currently depressed or experiencing excessive anxiety about being chronically ill and seem to have developed good coping skills. I've got two more appointments with her, then we'll schedule on an "as needed" basis. I have battled depression and not handled my disease very well in the past, so it's good to have outside confirmation that I'm doing ok mentally.
The physical therapy has helped my upper back pain a bit, but the daily headaches have returned since I stopped all the meds the neurologist prescribed.
I've kept up with my "olympic training regime" so far, taking daily walks to the mailbox (roundtrip: 3 min).The Georgetown doc told me to walk even on days that I feel awful to work on reprogramming my brain. Starting Monday, I'm going to increase to four minute walks...maybe...or I might just stick with my mailbox walks. I'll see how I feel.

That's all for now.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, headache, nausea, low grade fever 100.0, blister in throat, sore lymph nodes under arms and in neck, tired and sore muscles, poor memory and thinking problems, air hunger.

Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 6

Getting Better is Exhausting

2009-12-12T12:50:00.010-06:00

Ugh. Sorry about the long silence. I've had all sorts of problems with new medications combined with horrible insomnia, so I have not felt up to writing. This post will be written in spurts, so there might be some repetition or jumping around of ideas.

My progress is so slow that on a day-to-day basis I feel like I'm not making any progress. When I compare myself now to how I was before the lumbar puncture and blood patch (when I was working full time), I'm still in pretty bad shape.

However, when I compare myself now to how I was immediately after the research study (when I was REALLY bad off), I can tell I have made some improvements. Here are some improvements:

I am able to shower more often. When I first got back, I was so sick and weak that it would take every ounce of energy to shower that I only did it twice a week at the most (sorry if that's too much info).
I can get in and out of bed without help, and I no longer spend all day in bed. Initially, there were times that I needed my husband to help me sit up in bed so that I could eat a meal or take pills. I now have more variety and spice in my life and spend time sitting or lying on the couch instead of lying in the bed!
I can drive myself to all my medical appointments. Driving is still a physical challenge. On days I have an appointment, I rest as much as possible before the appointment and usually end up taking a nap after.
This week I started doing some light chores like putting dirty dishes in the dishwasher and twice getting the mail (we live in an apartment complex, so our mailbox is a short walk from our place). These are big accomplishments!
My headaches have decreased, probably as a result of some of the medications, which unfortunately I have now stopped due to side effects (see below).

Unfortunately, I still have a way to go. I'm still running low grade fevers. There have been a couple of occasions that my temperature was a normal 98.6 or a close 98.8 (and of course I would get excited), but then by the next day it would be up again.

I'm still exhausted and not sleeping well, and I'm sleeping a lot. I'm still having trouble breathing. My throat hurts on and off, and I've got a blister on what remains of my left tonsil. My lymph nodes still hurt, and my memory is a mess. I feel like the forgetful fish Dory in the movie Finding Nemo. It's funny, but not.

So much has happened since my last post that this post would become a book if I tried to explain everything, so I'll just try to cover the main points (not necessarily in chronological order):

I was having difficulty breathing (see symptoms from last post) and thought it was from my asthma, so I went to my asthma specialist to get checked out. My lungs are completely clear. My breathing symptoms are not from asthma. I was given a name for my symptom: "air hunger."
Because of worsening insomnia combined with the sense of air hunger that started around the time I started my new medications, the neurologist instructed me to stop the zonisamide (see last post) and diazepam (a.k.a. Valium) which was prescribed in place of the Soma (muscle relaxant) which was supposed to help my tension headaches. I am no longer on any medications for my tension headaches or migraines.
It is interesting that both the Soma and Valium increased my insomnia symptoms to an extreme degree. Both medications usually cause drowsiness. The Soma kept me up 36 hours (see previous post). The Valium did not make me sleepy, and it kept me in a very light sleep when I did fall asleep. I would wake up ever couple of hours. I still say I'm the queen of less-common side effects.
The neurologist has temporarily given up trying to treat my headaches, saying that we need to first address my insomnia. Good call. I'm exhausted. He has prescribed Lunesta for sleep, which is supposed to help people fall asleep and stay asleep. I've taken it two nights, and it does seem to help me fall asleep (though I have discovered that it takes nearly two hours before it starts to work); however, I still find myself waking up during the night.
In the past, I've used melatonin, valerian, and/or benedryl to help with sleep; however, my sleep problems have gotten out of control since the lumbar puncture. I'm willing to try pretty much anything. It's funny the Soma and Valium, while not specifically prescribed for my insomnia, were so unhelpful.
I have started going to physical therapy for my upper back and neck with the hope that it might help with my headaches. I've had one treatment, so I don't feel any difference yet...but I'm hopeful.
I have started seeing a Cognitive Behavioral Therapist to see if she could give me any useful techniques for dealing with my newly worsened level of CFS. I've only been to her once, and I like her so far. She knows I'm not depressed and that the CFS is not a psychological disorder. I feel it significant to point out that she herself has Fibromyalgia.
I have started light therapy. I bought a travel-sized light therapy light from Amazon and am using it for 30 to 60 minutes each day when I get up. I'm hoping it will help "reset" my internal clock which is obviously not functioning properly.
I purchased a cheap eye mask to help block out all light when I go to bed, and I got a "sleep machine" that creates white noise to help mask external sounds that can be disruptive to sleep.
In addition to the light therapy, eye mask, and sleep machine, I try to practice good sleep hygiene by going to bed and waking up at the same time every day (I set my alarm clock), but doing so has been a fruitless exercise thus far. I'm hoping if I keep doing what I'm doing along with trying to find a sleep medication that actually works, things will improve in time.
I am trying to start the "olympic exercise regime" that the Georgetown doc recommended to me. He suggested going for short walks. In the first week, I would go for a one minute walk every day. In the second week, I would go for a two minute walk every day. In the third week, a three minute walk every day, and so on. Up to thirty minutes. If I have trouble, I could repeat a week. That is, if I'm ok with three minutes but not four, then I would stick with three minute walks for another week.

When the Georgetown doctor told me to stay out of work until January and my regular doctor agreed, I decided I would do everything my doctors suggested...even if I was skeptical...because I really want to get healthy. I also started doing my own research. The sleep machine, eye mask, and light therapy were my own ideas, but pretty much everything else has been suggested by them.

I am not a big fan of prescription medications because I've been on so many over my lifetime. I rather prefer natural remedies; however, all the supplements I'm on are obviously not enough at this point. I have an appointment with my regular doctor on Monday, and I want to talk to her about possibly taking antiviral medication.

I've read that some CFS patients have had some success with long-term antiviral medications. Multiple blood tests have shown elevated levels of EBV in my system (and occasionally elevated HHV6). Most of my symptoms are very viral-like, as well, so I'm hoping she'll consider a prescription. If not, I'll keep plugging away. There are also a few more supplements I want to ask her about.

Oh, and my Short Term Disability has still NOT been approved. It's still pending, so that's better than being denied. I started the process on November 20. I'll post an update if/when anything happens.

I'm too tired to write any more, so this will have to do.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, insomnia, mild headache, low grade fever 99.3 (99.7 yesterday), blister in throat, sore lymph nodes under arms and in neck, tired muscles, poor memory and thinking problems, air hunger, area of blood patch has still not healed and is itchy.

Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5

P.S. Happy Hanukkah to those that celebrate!

Neurologist Trip and Medication Side Effects

2009-12-02T21:57:00.003-06:00

My cognitive and motor (i.e., typing) functioning is poor at the moment because I have been awake since yesterday morning at 10am - with the exception of a 3 hour nap I managed to get this morning.

This post will be primarily comprised of (edited) emails I have written to people explaining the recent events.

First, an email about my trip to the neurologist (this is an email I sent yesterday to the Georgetown researchers who are very interested in my case):

As requested, I am emailing you a list of the meds the neurologist prescribed.

Also, am no longer taking trazodone for sleep because I had an odd reaction to it. About 60 to 90 minutes after taking it, I would experience a feeling that my nasal passages were closing. If I tried to breathe through my nose, I had the feeling that I was suffocating.

I am still suffering from insomnia. I have also been running constant low grade fevers since I left Washington, DC. Today it reached 100.1, the highest it's been since this all started. My whole body feels very weak, and the lymph nodes in my neck and armpits take turns hurting. My short term memory has also been terrible (in a somewhat alarming way).

On the bright side, the neurologist said that being in a constant migrainous state combined with a lack of quality sleep can cause memory problems.

I saw my regular doctor last Wednesday before Thanksgiving, and she agreed with everything you suggested. She also thinks I need to be out of work until at least January.

I saw the neurologist yesterday. The doctor diagnosed me with chronic daily tension headaches that have resulted in a chronic migrainous state. He has ordered an EEG, MRI, and MRA which I will have at the end of this week. I also had blood drawn to check for muscle disease.

Here are the medications:

~ Soma/carisoprodol 350 mg tablet (muscle relaxant for tension headaches). Last night was first dose. Per instructions, I am taking half a tablet every night this week and will increase to a full tablet if I do not notice a difference with the half tablet.

~ zonisamide 25 mg capsule (anti-convulsant also used for chronic migraines). Tonight was first dose. Per instructions, I will take 1 pill every night in the first week and will increase to 2 pills every night in the second week, 3 pills every night in the third week, and 4 pills every night in the fourth week. Four pills per night is the maintenance dose he wants me on.

~ Migranal 4.0mg/ml nasal spray (for migraines). Tonight was first dose. Per instructions, I will use it every 12 hours for six doses. After that, I will use it as needed.

~ Fioricet. Per instructions, I will only use this medication if I have a really horrific migraine.

I think that's all. Please let me know if you have any questions.

Kind regards,

Alyson

Next, an excerpt from an email to a friend I sent this evening about the recent happenings (this wonderful person will be bringing dinner to Kenny and me this week):

Just as a heads up, I'll probably be extraordinarily exhausted when you see me. I took some new medication last night that has resulted in me being awake for nearly 35 hours with only a 3 hour nap during that period. I will be taking sleeping medication tonight that my doc prescribed, but I have no idea how I will feel tomorrow after having been awake for so long. My cognitive and motor functioning has been declining as well; however, I hope they will be improved tomorrow.

The neurologist instructed me to stop the Soma (muscle relaxant), thinking that's possibly what kept me up. Usually it makes people drowsy, but apparently some people (i.e., me) experience insomnia. I'm also going to take yet another new medication the neurologist prescribed today to try to help me sleep tonight.

I seem to be the queen of less common side-effects.

I'll write more when I'm up to it, but I thought it important for me to document this experience.

Today's Activities: home. Today's Most Annoying Symptoms: INSOMNIA! nausea, sore throat, sore lymph nodes under arms, sore muscles all over body, unusual muscle weakness in the legs, the feeling of being over medicated, horrible memory and thinking problems, occasional sensation of not being able to get enough air (asthma).

Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 6

Two Steps Back, Baby Steps Forward

2009-11-29T20:23:00.004-06:00

I'm feeling quite ill today, but I felt the need to write a post because I feel it's important to document my experiences during this challenging time. I am mentally fatigued, so I will be writing this post in spurts and as thoughts come to mind. I also do not plan on proofreading this post, so please ignore any odd text.

I went to see my regular doctor on Wednesday, and she pretty much echoed everything the Georgetown doctor said and recommended. She also added her own suggestions. I'll write about all the two doctors' recommendations in a future post.

When I said that the other doc recommended that I stay out of work until January, she said "at least until January." Yikes! I hope that's not the case. I already miss my work friends, who are (if the truth be told) my only friends since I don't have a social life. I also enjoy my job. I can watch only so much TV before it gets old.

Like many Americans, my husband Kenny and I celebrated Thanksgiving with his family Wednesday night and much of Thursday (they live about 30 to 45 minutes away by car). I made sure to rest before and during the experience as much as possible, but I still managed to overdo it simply by participating.

After having an almost perfect temperature of 98.8 at the doctor's office on the Wednesday morning before Thanksgiving, my temperature went back up to 99.8 by Friday and is currently running at 100.0 as I write this post. I have not left the house since we got back home on Thursday.

Despite the setback, I do not regret spending time with family. Now that I spend my days at home rather than seeing colleagues and friends at work, contact with other humans (I love my cat, but...) has become more valuable. I also enjoy spending holidays with family.

Tomorrow I have an appointment with a neurologist. We're going to talk about my headaches, which have been increasing in frequency and intensity since the worst headache of my life on November 1. The Georgetown doc recommended that I see a neurologist, and my regular doctor referred me to the one I'm seeing tomorrow.

My only concern is that the drive will be a long one, and I have to drive myself. I'm going to leave extra early so that I can pull over to rest along the way if I need to.

Though I'm still feeling physically awful, I am feeling better mentally. I have come to accept my new situation (I was in denial for a bit); however, I have also made the decision to aggressively work on getting back to my "normal" or even better. I'll write about some of my plans in a later post.

I've also slept better the past two nights. I have been battling some terrible insomnia lately (trouble falling and staying asleep), so it's been a relief to sleep through the night for a change. I give credit to the trazodone prescription the Georgetown doc suggested and my doctor prescribed. The doctor recommended it because it is less addictive than most other sleep medications.

It took a couple of days of taking the medication before it seemed to help, but it seems to be working in part. I still have trouble falling asleep, but they staying asleep problem bothered me more.

Baby steps...

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 100.0, generally fevery feeling, headache, nausea, sore lymph nodes under arms.

Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5

Too Sick to Work

2009-11-23T21:26:00.005-06:00

I have fallen into such a major crash that I am no longer able to work at this time.

Since my lumbar puncture and subsequent blood patch (see previous posts regarding the Georgetown CFS study for background info), I have been running constant low-grade fevers and been extraordinarily weak. I have been sleeping 10-12 hours per night and have needed another 3-6 hours worth of naps each day. And I'm still exhausted.

I've been plagued with daily headaches ranging from dull aches to full-on migraines. The lymph nodes in my neck and armpits have recently become more sensitive, and my throat has hurt for the past couple of days.

In short, I'm a physical mess.

I haven't left the house since I flew back home from Washington, DC on Saturday. My wonderful and loving husband, Kenny, has been taking care of me. He has picked up where my parents left off. It is fortunate that he has this week off from work. Kenny has been preparing all my meals and even helps me sit up in bed when I'm feeling extremely weak.

About half of my waking hours are spent lying down. The rest are spent sitting. I'd say I have about three or four good hours a day at most when I can think clearly and feel almost human.

I was at Georgetown University Hospital on Friday (my third visit in a week due to my continued fevers, headaches, and general crappiness), and I asked the doctor (a CFS expert, by the way) if he thought I should take a temporary leave of absence or work part time for a while. He looked me in the eye and said I should not go back to work until January.

I was shocked that he would suggest such a long period of time. At the time I asked the question I knew I was bad off, but I didn't think I was that bad off. This was me in denial. Thank goodness the Georgetown doc saw through my nearly always smiling "I'm ok" exterior to see that I was not ok.

I haven't been this sick in years.

I am now filing for short term disability.

The process is a bit convoluted if you ask me. An outside company will be deciding (a) whether or not to approve my disability claim and (b) if they approve it, they will decide how long I will be allowed to stay out of work. Even though the doctor has recommended I not go back until January, this outside company could say I need to go back immediately.

Despite all the insanity, I do not regret volunteering for the research study. In fact, I told the research team that if they have any future CFS studies, I would be ready and willing to volunteer.

I will be seeing my regular doctor on Wednesday. I have a lot to discuss with her, but I'll save this topic for another post.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 99.6, generally fevery feeling, headache, migraine earlier today, nausea.

Mood (10 is best): 4
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5

Healthy Volunteers STILL Needed for Georgetown CFS Study

2009-11-20T22:17:00.003-06:00

Note: This post is a copy and paste (and slightly edited) version of something I've posted and emailed before. I am posting again because it is so important.

Do you or does someone you know live near Washington, DC (or are you willing to travel there for a $400 stipend)?

Georgetown University Hospital is conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

My husband and I both volunteered for the study. We checked in to the hospital on a Wednesday and checked out on Friday. Kenny completed the study as a healthy control with no problems and is back at work. It is taking me a little extra time to recover, but I'm still glad I did it! Volunteering for CFS research gave me a sense of empowerment.

They still need many more HEALTHY individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap) and other minor procedures including blood tests, breathing tests, strength tests, and filling out surveys. There is a $400 stipend that is awarded to volunteers who complete the study.

Call 202-687-8231 or email cfsresearch@georgetown.edu if you are interested. The entire hospital staff involved is amazingly kind and compassionate.

Please forward this post to friends and loved ones, post the info on your blog, a message boards, or website, or just stand outside and shout about it.

I have been ill with CFIDS for my entire adult life and am sick of being sick. This disease is not just about being tired. This is the kind of serious research we need more of! Please help.

Thank you for reading!

Today's Activities: trip to hospital (again). Today's Most Annoying Symptoms: exhaustion, low-grade fever of 99.7, generally fevery feeling, headache.

Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 5

P.S. A lot has happened this week. I will be blogging about it soon.
P.P.S. To my fellow bloggers: Please forgive me for not keeping up with your blogs lately. I have had to focus on myself a lot these days to work on getting better. I promise I will catch up with you when I am doing better.

Georgetown CFS Study: Still in DC

2009-11-19T00:20:00.028-06:00

To my readers: Thank you for the continued comments on my Georgetown posts. Even those of you not leaving comments, I appreciate your sending healthy thoughts my way. You have given me great moral support. I promise I will respond to comments when I get the mental energy, so please feel free to continue posting.

I'm on a really odd sleep-wake schedule. Basically, I sleep when I'm tired, and I'm up when I'm not. All the caffeine I've been ingesting has not helped my schedule.

I'm mentally too tired to write a significant post in paragraphs, so I thought I'd do something a little different using bullet points: Good Things/Odd Things/Bad Things/Thoughts/Extra. It took me almost three hours to write this post (with lots of breaks in between).

Good Things:

My puncture wounds from the lumbar puncture and subsequent blood patch are healing.
The soreness of the area is also improving.
I'm getting lots of rest because I have very limited internet access and there's not much else for me to do.
I took my second shower (in a week!) since my procedures and feel clean (though the shower exhausted me so much I slept for three hours after).
My husband was amazing to serve as a healthy control for this research. He has severe anxiety when it comes to getting needles poked in unusual places (he's ok with blood tests, but lumbar punctures are another matter), but he participated because he loves me so much.
My parents have been fantastic. I know they are incredibly stressed because of work issues and deadlines coming up, but they pretty much dropped everything to take care of Kenny and me. They've also provided me much moral support and handed me many pieces of tissues every time I've cried (which has been a few times).

Odd Things:

I developed an odd reaction to all the cola I was drinking. I started walking as if tipsy (i.e., drunk) but did not feel dizzy at all. I was bumping into things and losing my balance. Obviously, I've stopped the caffeine. Of course, I want to point out that it was the doctors who told me to drink so much caffeine to avoid a second blood patch! I should also mention that I did not diagnose myself with this odd reaction to cola. My doc (via the research asst) instructed me to stop.They think it has something to do with the combination of caffeine and the acidic nature of carbonated beverages.
I asked the research assistant how many other research participants have ended up having similar complications -- that is, spinal leak, blood patch, and subsequent fever. He said I'm the only one he knows of! My mom has always told me I was special, but I really don't want to be this special.

Bad/Sad Things:

Kenny went home yesterday and is back at work, so I miss him. He could have gone home sooner, but he wanted to stay with me as long as possible.
I still feel physically and emotionally crappy.
I'm still running a low-grade fever. It hasn't been as high as 100.0 since Monday, but it's been ranging from 99.2 to 99.5 the past few days.
I did not expect any of the complications and thought I would be going home Sunday, November 15, so I didn't bring enough mediations or spplements. Lucky me, my period started today because I didn't bring my entire pack of birth control pills. Boo!
I'm struggling with the fact that there are still some close family members that do not understand CFS and have not made much effort to learn more about it by asking me to share my story or asking about the disease itself. They do not seem to understand that I suffer every day. I'm pretty sure they don't think CFS is serious. They may even believe it is entirely psychological. I cried today about this. I care about them a great deal, so their ignorance hurts me that much more. (Note: I want to be clear that I am not referring to my parents. They are very supportive.)

Thoughts:

I am seriously considering taking a temporary leave of absence from work for my health. I love my job and the direction of my career, but my health has been getting progressively worse this year. I feel as though I have not been able to catch up with my rest and get up to the point of health and functionality I reached last year.
Alternatively, I may try to negotiate reduced work hours. I am not considering quitting altogether because my job gives me a sense of purpose and enjoyment.

Extra:

The Georgetown CFS research group still desperately needs HEALTHY volunteers. Their research will not be valid if they don't have enough control subjects. Please spread the word! Here's a copy of the email I wrote today for my husband to forward to people he knows:

Do you or does someone you know live near Washington, DC (or are you willing to travel there for a $400 stipend)?

Georgetown University Hospital is conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

My husband and I both volunteered for the study. We checked in to the hospital on a Wednesday and checked out on Friday. Kenny completed the study with no problems and is back at work. It is taking me a little extra time to recover, but I'm still glad I did it!

They still need many more HEALTHY individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap) and other minor procedures including blood tests, breathing tests, strength tests, and filling out surveys. There is a $400 stipend that is awarded to volunteers who complete the study.

Call 202-687-8231 or email cfsresearch@georgetown.edu if you are interested. The entire hospital staff involved is amazingly kind and compassionate.

Please forward this email to friends and loved ones, post the info on your blog, a message boards, or website, or just stand outside and shout about it.

I have been ill with CFIDS for my entire adult life and am sick of being sick. This disease is not just about being tired. This is the kind of serious research we need more of! Please help.
Thank you for reading!

Kind regards,
Alyson

Today's Activities: bedrest and occasional sitting, shower. Today's Most Annoying Symptoms: exhaustion, general lower back pain from procedures, low-grade fever of 99.5, generaly fevery feeling, mild balance problems, feeling weepy from the emotional strain.

Mood (10 is best): 4
Energy (10 is best): 2 (after my naps)
Physical Discomfort (10 is worst): 5

Georgetown CFS Study: Unpleasant Surprises

2009-11-16T22:32:00.004-06:00

To my readers: Thank you for all the comments so far on all my Georgetown posts. They have really helped to lift my spirits. I have been physically and emotionally overwhelmed, so all I can do at the moment is blog (and not respond). However, I promise I will respond when I get the mental energy, so please feel free to continue posting.

I am still in DC because the doctors asked me to postpone my original flight back home after my spinal leak and subsequent blood patch. I was supposed to fly back Sunday but changed the flight to Tuesday (tomorrow).

Well, it seems that lumbar punctures are not exactly my cup of tea. This weekend I started to develop low-grade fevers. In order, my temperature was 99.2 on Saturday and slowly increased to 99.4, 99.5, 99.7, 99.8, and reached 99.9 by this afternoon. (For my metric friends, 98.6 is normal.) That's when I called the research team.

They told me to come in to the hospital right then. When they took my temperature at the hospital, it had reached 100.0. Sheesh.

I'm too tired to explain everything, but basically the fever is possibly as a result of (from least to most serious) (a) my body working on absorbing the blood patch, (b) my body fighting off some sort of virus, or (c) my body fighting off some sort of infection from either the lumbar puncture or blood patch.

I'm also still experiencing very, very mild spinal headaches, so part of my instructions are to lie down and rest and also drink LOTS of caffeine to keep the symptoms at bay so that I don't have to undergo another blood patch. Trust me, I've consumed more bottles of Coca Cola in the past few days than I have all year. I do NOT want another blood patch. I never knew cola could be part of a prescription.

Needless to say, they are watching my progress and have asked me not to fly home until this weekend. My husband is flying home tomorrow to be with our cat, Callie, and to go back to work.

I also have to reiterate the appreciation I have for the entire hospital staff, especially Dr. James Baraniuk (the lead researcher and Associate Professor of Medicine at Georgetown Medical School), Dr. Murugan Ravindran (Post Doctoral Fellow), and Yin Zheng (Research Assistant and Future Doctor), for their amazing patience and compassion.

Every time Dr. Baraniuk met with me (and it was many times including this evening), he took his time to listen to everything I had to say including my concerns and questions and explained everything, making sure I understood what was being discussed. If I missed something and asked him to repeat it, he repeated it without a hint of frustration or hurridness. He exudes patience and a great sense of humor.

After my impromptu appointment this evening, I was advised not to fly back home tomorrow and to wait until this weekend. We need to watch my fever to see if it goes up or down.

I've changed my flight again but this time didn't have to pay as much for the new flight (I had to pay a nonrefundable $150 extra to change it last time). This time it was only about $30 extra (nonrefundable, of course). Yuck. It's all starting to add up. Thank goodness for the $400 research stipend that will pay for my total airfare costs.

All in all, despite the extra surprises (i.e., complications), I do not regret any of this experience. I do it all in the name of science with the hope that useful CFS research will result.

Today's Activities: bedrest and extra trip to hospital. Today's Most Annoying Symptoms: exhaustion, mild pain in back at site of lumbar puncture, mild pain in back at site of blood patch needle entry, general lower back pain from procedures, headache, low-grade fever of 100.0, generaly fevery feeling, nausea, dizziness, feeling weepy from the emotional strain.

Mood (10 is best): 4
Energy (10 is best):3 (after my naps)
Physical Discomfort (10 is worst): 6

Georgetown CFS Study: Hospital Experience

2009-11-15T19:28:00.000-06:00

I'm still lying on my back at my parents' house to aid with the healing process. It is painful to sit or stand for more than brief periods of time -- probably because of the second puncture. (My very healthy husband is up and walking around just fine today with only minor aches.)

Because I've been lying down all day for the past few days, I don't have many options for activities. I haven't been in the mood for TV lately (although I think I'll try to catch Home Makeover Extreme Edition if it's on tonight). I'm mentally too tired to read, and talking a lot is exhausting. I've pretty much spent most of my waking hours thinking.

I've got a bunch of thoughts running around in my mind and feel the need to get them all out, so this post is going to be a hodge-podge in no particular order.

The entire Georgetown University Hospital medical staff involved in this study was INCREDIBLE. Words cannot express how much grattitude I feel toward them. Every single one of the doctors, nurses, and research assistants took their time to answer any and all questions I had. They treated me with warmth and compassion.

Even when I began to have complications from the lumbar puncture and required a blood patch, they did not act as if I were throwing a wrench into their plans (even though I know I forced all of them to work late). Rather, they treated me with care and concern.

When I cried from pain, they spoke calming words to me and assured me that the pain would pass soon.

I want to especially recognize by name Dr. James Baraniuk (the lead researcher and Associate Professor of Medicine at Georgetown Medical School), Dr. Murugan Ravindran (Post Doctoral Fellow), and Yin Zheng (Research Assistant and Future Doctor) for their amazing compassion. I've encountered so many doctors and healthcare professionals who seriously lack compassion and understanding when it comes to working with patients with CFIDS.

The anesthesiologist (whose name I can't remember) was so kind and reassuring when she was explaining the blood patch procedure. She talked me through the entire procedure while she was doing it and made it less scary.

Everyone treated me with dignity. I had to go to the bathroom immediately after the lumbar puncture (even though I went before the procedure) but was not allowed to get up out of the bed. A nurse brought in a bedpan for me to relieve myself, lifted my butt, put it under me, and pulled my pants and underwear down. I was very embarrassed by this, but she acted like she did this every day (which may actually be true). In the end, I had performance anxiety and was not able to go, but I appreciated her kind attitude.

Going over my complete medical history with Dr. Baraniuk was interesting. All the little quirks I have that I didn't think much about are apparently pretty common in CFS patients. For example: I am constantly out of breath. Sometimes I get the sensation that my brain has forgotten to breathe properly and I have to consciously make the effort to breathe in and breathe out.

Another example is the fact that I easily get disoriented in the dark when I'm going from the bed to the bathroom and vice versa. I also have trouble going up and down stairs, occasionally missing a step because I "forgot" where I was on the steps.

The most profound part of my entire experience was that Dr. Baraniuk determined that I "severe" case of CFS...and he's seen A LOT of CFS patients. Wow. I suppose I've known it all along, but have been in complete denial. I have just been pushing through and "passing" as a healthy person.

My job has exhausted me to the point that I worry that I am concerned that I am only making myself sicker or at least preventing myself from getting better. At this point, I am reevaluating my life and considering my next steps. I'll write about my thoughts in a future post.

Needless to say, this entire experience has been exhausting and eye-opening.

Today's Activities: bedrest. Today's Most Annoying Symptoms: exhaustion, pain in back at site of lumbar puncture, pain in back at site of blood patch needle entry, general lower back pain from procedures, headache, low-grade fever of 99.4, nausea, crying from emotion of it all.

Mood (10 is best): 4

Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 6

Georgetown CFS Study: Day 3 (Complications)

2009-11-13T11:34:00.009-06:00

Disclaimer: Today is November 15 (very early). I am retroactively uploading it under the correct date of the actual events.

Day three started out fine but quickly deteriorated.

Almost from the moment I woke up I started experiencing terrible headaches and nausea that only felt better when I was able to lie down.

My worst headache was so bad that I started to cry.

At first my headaches seemed very much like a migraine headache because of my light sensitivity, so they gave me migraine medication. They also gave me phenergan for the nausea and something else to help me sleep.

My reaction to the the phenergan was horrible. It was administered through my IV port and immediately started slurring my speech and causing extreme drowsiness. Also, my whole body started twitching very oddly (my arms and legs were twisting and I made weird faces). The whole experience was extremely unpleasant to say the least. I can add that to my list of medications to avoid...

I eventually fell asleep but woke up with a headache. The migraine medication did not seem to help. The headache and nausea were only made worse by my sitting, standing, or moving.

After taking a complete history of the past 24 hours since the lumbar puncture, they concluded that my headaches seemed like spinal headaches. However, they wanted to bring in an outside professional -- an anasthesiologist who often treated spinal headaches -- to determine independently if what I was having was actually a spinal headache.

She determined that I was likely having a spinal headache.

This was NOT news I wanted to hear. The treatment for a spinal headache is a procedure called an epidural blood patch. I really did NOT want to have another giant needle stuck in my spine at that point.

I honestly did not know what to do. They said I could go on complete bed rest for up to two weeks and see if I got better, or I could try the blood patch. If the blood patch worked, then my headaches would disappear almost instantly. I really did not want another poke in the back, but I also did not want to be completely bedridden for that long.

After asking the doctors for their opinions, I decided to go with the blood patch because the possible instant gratification of an absent headache was more appealing than the wait-and-see-for-weeks approach. I also didn't want to be out of commission for that long away from home.

They did the blood patch and it was more painful than the lumbar puncture itself. Bleh. Still, I did start feeling better very quickly, perhaps in less than 30 minutes? Wow!

I am now on mandatory bed rest at my parents home in DC and have had to postpone my flight back to Houston. Kenny has not had any complications, but he has insisted in staying with me until I could fly back. If all goes according to plan and my back cooperates with me, we will be flying home on Tuesday.

If you're wondering why I'm up in the middle of the night writing on my blog, it's because drinking lots of caffeine is part of my treatment plan. I think the caffeine is supposed to help with improving the cerebrospinal fluid pressure. Caffeine also has the side-effect of keeping me up even when I'm tired. After I finish my last Coke tomorrow, I don't plan to have any more caffeine if I feel ok.

Anyway, I've left out a lot of details which I'll include in another post, but I just wanted to keep everyone updated with the current news.

I will end this post with a (slightly edited) copy of the email I sent my immediate supervisor (whom I like and respect) regarding my current condition:

I thought it only fair that I explain in greater detail my sudden, upcoming absence from the office. Wednesday through Friday I participated in medical research at Georgetown University Hospital that directly involves my primary chronic illness, Chronic Fatigue and Immune Dysfunction Syndrome. The risk of participating in the research study is low with only 7% of the participants experiencing any sort of complications. Apparently, seven is my "lucky" number. (See http://clinicaltrials.gov/ct2/show/NCT00810329 for the research project.)

The most invasive part of the research involved a lumbar puncture (a.k.a. spinal tap) and the removal of 20cc of cerebral spinal fluid on Thursday afternoon. I went through the procedure fine and felt ok until Friday when my condition started deteriorating pretty quickly. I was leaking cerebral spinal fluid from my spine, so I had to have an emergency procedure called a blood patch to correct the leak. According to the doctors, I was not at risk for any major complications from the leak, but the head pain, dizziness, and nausea involved from the spinal leak was incapacitating.

I am still in some pain from the two separate punctures but am now recovering at my parents' house in Washington, DC. I have been advised by one of the the doctors on my case to stay in DC a bit longer rather than stress my body by flying back home tomorrow morning. I hope to be back at work on Wednesday, but it may be a good idea to have any major duties reassigned for the rest of the week to other people because I have become extremely weak and am limited in my endurance and ability to move.

Currently, I am on complete bed rest. I am not allowed to lift anything or bend, turn, or twist my body because I am at risk for another spinal leak. I'm not even allowed to bend over a pick up a pen that I might have dropped on the floor. Standing and sitting are painful (I am writing to you while lying down on a couch). I will be requesting wheelchair escort service at the airports for my departure from DC and arrival in Texas.

I should be back to normal Monday, November 23 and be able to resume normal duties, but the rest of this week will need to be light duties only. On the upside, other than feeling physically poor, I am mentally doing well. I do not have any regrets in participating in this research because it is my hope something good will come of this research. It's also nice seeing my mom and dad.

Anyway, that's it for now. I will continue to respond to email in between naps, as I am so woefully behind, but speaking on the phone is a bit difficult for me for the time being. By the way, I have all sorts of medical documentation if anyone needs proof of my recent activities.
See you soon.

Alyson

Today's Activities (Nov 13): research guinea pig (at Georgetown). Today's Most Annoying Symptoms: severe headache, severe nausea, exhaustion, pain in back at site of lumbar puncture, pain in back at site of blood patch needle entry.

Mood (10 is best):5
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 9 (before blood patch) 5 after

Georgetown CFS Study: Day 2

2009-11-12T19:24:00.002-06:00

Disclaimer: Today is November 14. I actually wrote this post on Thursday, November 12, but was not able to upload it to my blog because of lack of internet access. I am retroactively uploading it under the correct date.

I’ve got an IV inserted at the bend of my right wrist, so I’m having to type everything with my left hand. (I’m right handed…)

Today started at 4am with the insertion of an IV port and more blood tests, and cheek swabs for DNA testing. I had another round of pain tests, and the rest of the time was prepping and waiting for the lumbar puncture.

The lumbar puncture itself went fine. It wasn’t exactly my idea of a good time, but I did not feel any pain from the actual procedure. Ironically, it’s the stuff they use to numb the area that hurts the most!

Kenny and I are now resting peacefully (napping and watching lots of TV, not necessarily in that order). They've given us medication to help with sleep, so I'm falling asleep now.

That’s all for now!

Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, exhaustion, dull pain in back at site of lumbar puncture.

Mood (10 is best): 7
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 5

Georgetown CFS Study: Day 1

2009-11-11T22:35:00.004-06:00

Please see I'm in the Georgetown CFS Study for background.

It's very late, but I felt the need to write a quick post about the Georgetown CFS study that my husband and I are participating in.

Kenny and I arrived in Washington, DC late last night. Here's the best part: no migraine! My dad picked us up, and we spent the night at my parents' house.

This morning we checked into Georgetown University Hospital and immediately started getting down to business. In addition to going over our complete health histories (mine took over an hour; Kenny's took about two seconds), we did pain testing (not as bad as it sounds), strength testing (turns out I'm not that strong...big surprise), pulmonary function testing (the exhausting part was when they made me hyperventilate intentionally), a couple of other random tests (like measuring my nasal passages), and had blood drawn. All this took all day and went into the evening.

Somewhere in between tests, they let me sleep for about an hour and a half because the testing was so exhausting.

Tomorrow is the cheek swab, lumbar puncture, and urine collection period, and Friday involves more blood tests. We'll be released around noon on Friday.

And believe it or not, the hospital food I've had so far (lunch and dinner) has been great! Well, except for the green jello, which I found to be questionable.

I haven't felt nervous about the lumbar puncture so far, but Kenny has a lot of anxiety. I am hoping he feels OK to do the procedure tomorrow. The hospital staff has been amazing. The primary researcher and his assistants are fantastic and have a wonderful bedside manner, and the nurses are quite attentive.

I'm really excited to be a part of this study!

That's it for now, I have to sleep.

Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, sensitivity to light, exhaustion.

Mood (10 is best): 7
Energy (10 is best): 4 (after my nap)
Physical Discomfort (10 is worst): 3

Headache Hindsight Meltdown

2009-11-09T22:33:00.001-06:00

Disclaimer: I had brain fog while writing this post. Please excuse any rambling or incoherent sentences.

It's taken me a little more than a week, but I've mostly processed what happened to me the Sunday I arrived in California. (See The Worst Headache of My Life for background info.)

Immediately after the experience I went into some sort of denial, brushing off the headache as a one-time deal. It was just a really bad migraine. Nothing to worry about, right? However, as things began to sink in, I started to realize that what happened could have had a much more serious outcome.

Not to be dramatic, but having such a severe headache could have been a symptom of all sorts of horrific brain events that I'm not going to go into. All you have to do is google "worst headache of my life" and see all the gruesome possibilities. I am fortunate that my headache turned out not to be as a result of a more serious and more immediate problem. Of course, I did not know that at the time.

In hindsight, I realize that I should have called 911 and gone to the hospital. If my husband or anyone I knew were having such an incapacitating headache and were not able to move or think straight and started vomiting as I did, I would have called an ambulance without hesitation. Unfortunately, I was alone and not thinking well, so I did not make the best choice.

I got all this wonderful hindsight about last week's headache experience yesterday. Unfortunately, it took another migraine to knock sense into me. I started to get another bad headache as I was flying back home from California yesterday. By the time I collected my luggage and got to my car, my head was pounding and I was feeling nauseated. I immediately took medication for my headache.

My head started to feel better after about an hour and the pain never reached an intolerable level, but the experience scared me because it was so similar to the last time -- getting a headache while flying that only got worse after landing.

When I got home to my husband, Kenny, I started crying. All the stress of my experience and being away from home hit me at once. He held my hand and let me cry. I had a meltdown.

My husband insisted that I call the doctor an make an appointment to get checked out. Since it was a Sunday I couldn't call to make an appointment at that time, but Kenny wrote a reminder on a post-it note for me to call. I called today an got an appointment for next Monday.

I fly quite a bit and have not had problems in the past. However, I seem to have developed a headache problem related to flying. I have another flight tomorrow. This time my husband is coming with me. We are traveling to Washington, DC for our participation in the Georgetown CFS study.

I am excited about this trip because it means participating in real CFS research, but I'm nervous about the possibility of getting another major migraine after we land. On the upside, I will be with family. My husband is coming with me, and my parents live in Washington, DC.

Today's Activities: work. Today's Most Annoying Symptoms: headache, exhaustion, pain in right arm.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Dipping a Toe in the Alternative Medicine Waters (Part I)

2009-11-06T17:51:00.007-06:00

My journey down the path of alternative medicine began due to the influence of my current doctor. She is an Internal Medicine doctor who treats many patients with HIV/AIDS or CFS. I think she is used to dealing with patients who have been marginalized or brushed off by others in the healthcare field. She has an amazing amount of compassion for her patients.

I first went to her in 2005 when I was 26 years old. I had been too sick to hold a full-time job for a couple of years by that time. At the time my health fluctuated between being completely bedridden and needing assistance to get to the bathroom to being able to leave the house for brief outings.

After doing her due diligence and ruling out other diseases, she diagnosed me with Chronic Fatigue and Immune Dysfunction Syndrome. She immediately started me on Glutathione/ATP injections, which I viewed as alternative medicine and my previous physician called “fringe medicine” and discouraged me from trying it. Needless to say, I left that previous physician for my current doctor.

I saved the original email that I sent to friends and family on the day I received my diagnosis, Thursday, May 19, 2005. Getting a diagnosis was a profound experience for me. Following is the email I sent in 2005 (edited for spelling):

I finally have a diagnosis.

It's Chronic Fatigue and Immune Dysfunction Syndrome.

I cried for an hour after I received my blood test results. I have been vindicated. Lyme disease, EBV, lupus, herpes, and many other diseases were ruled out. My thyroid, liver function, red and white blood cells, and all other USUAL things tested in a full blood work-up were within normal limits.

HOWEVER...

My natural killer cells count was 90 (normal is 300-500). My ATP count was 10 (normal is 30). These results combined with my other symptoms, current ailments, and past health history are consistent with other patients with CFIDS. I now have medical evidence that my body is not as healthy or normal as many doctors/nurses have insisted.

The doctor treating me is in Internal Medicine and specializes in treatment of CFIDS and other immune disorders. I found her through the a CFIDS support group and the Co-Cure Good Doctor List (http://www.co-cure.org/index.htm).

After more than six years of my health getting progressively worse, thousands of dollars in medical and prescription bills, and many doubting or ignorant doctors ignoring my insistence that something was wrong, I finally have hope. It took two months to get an appointment with the wonderful doctor who finally diagnosed me, but it was worth it.

The next step is treatment. In addition to paying closer attention to my diet and myriad of vitamins and supplements, I'm going to start receiving weekly Glutathione/ATP injections for six weeks to try to correct my deficiencies. It is a bit on the controversial side, but if it works and I can actually function like a normal human being for an entire day, I couldn’t care less what anyone thinks about the injections. After we see how that goes, we'll reevaluate what to do next.

I am also planning to contact doctors who have treated me in the past few years so that I may send them information about CFIDS, as well as a copy of my medical record and blood tests. I don't want other patients going through what I've been through. The worst feeling in the world is having a doctor not believe or understand you.

Here are a couple of websites to visit to learn more about CFIDS.

http://www.cfids.org/
http://www.cdc.gov/ncidod/diseases/cfs/

Thanks for reading!

Take Care,
Alyson

Reading this email brings back mixed emotions, including the pain I went through trying to find a doctor who would take me seriously.

I credit the Glutathione/ATP injections for allowing my health to improve enough for me to work full-time. I’m no longer on those particular injections because they became too painful to tolerate, but I am on different injections and other supplements…but that’s for another post.

Today's Activities: travel for work. Today's Most Annoying Symptoms: intermittent nausea and vertigo, exhaustion, muscle fatigue, sore muscles.

Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

A Quick Hello

2009-11-03T19:49:00.001-06:00

Thank you for all the support in response to my Headache post.

I just wanted to check in to say hello and let everyone know that I am feeling much better than I was on Sunday when I wrote that entry. I have been feeling headachy since then, but I haven't had any new migraines.

I am still processing what happened and will post an update on my next steps when I come up with some.

Today's Activities: travel for work. Today's Most Annoying Symptoms: headache, intermittent nausea, exhaustion, muscle fatigue, sore muscles.

Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

The Worst Headache of My Life

2009-11-01T20:22:00.006-06:00

Today I had a bit of a scare. Earlier today I became almost completely incapacitated because of a horrendous migraine headache and considered going to the emergency room.

I still can't move around too much without feeling nauseated or having my head pound.

This morning I flew from Texas to California for work. As usual, I slept for much of the flight. When I woke up as the plane was landing, I had a terrible headache. It got worse every second that passed.

As I stepped off the plane, all I could think about was taking something for the pain. I had one Tylenol and one Motrin left in my bag from my last trip, but I needed something to take it with.

My headache was getting worse so quickly that I didn't think I could make it all the way to baggage claim. I couldn't tolerate light or sound, and I was getting more and more nauseated. Luckily there was a gift shop near the gate, so I went in and purchased a juice and a snack to take my medicine.

I took the medicine immediately. Not wanting to leave my suitcase going around and around the baggage claim unattended, I slowly made my way to the baggage claim area.

As soon as I got my suitcase, I sat in the nearest chair and couldn't move without extreme pain. On a pain scale of 1 to 10 with 10 being extreme pain, I was at a 10. (I have only been at a 10 once before in my life, and that time resulted in a trip to the Emergency Room and a hospital stay.) The headache was so severe that I couldn't think straight.

All I could think about was the pain.

I was hoping the medicine would start working about 30 minutes after I took it. It didn't. I waited another 20 minutes. Still nothing. At that point, I dragged myself to the nearby giftshop and purchased another travel pack of Tylenol and Motrin. I went back to my chair and took one more Tylenol and Motrin. After another 40 minutes, my pain had slightly improved to a 9.

Though I've had migraines before, I've never had one this severe. Every sound felt like a dozen knives stabbing me. I had to cover my ears a few times as noisy people went by. I kept my eyes closed with sunglass on because the light was painful as well. I felt as if my head would explode. I was so out of it that at one point I thought the pain might kill me.

Sitting in the same chair at the airport for about an hour and a half with little relief from the extreme pain, I started to feel a little scared and alone. I also really wanted to get to my hotel so that I could lie down on a bed.

I ended up making a deal with myself. I would go to the hotel and lie down. If I continued to feel as bad, I would call an ambulance.

I made my way to the rental car shuttle bus and got on. I was the only passenger. As soon as we started moving, my pain went back up to a 10 and an extreme wave of nausea rolled over me. I knew I was going to vomit, but I couldn't open my mouth to tell the bus driver to stop.

I desperately started digging through my bag and found a small zip lock bag with some of my medicine in it. I dumped out the contents of the zip lock into my bag and proceeded to throw up in the zip lock uncontrollably. As far as I could tell, the bus driver didn't even notice. I sealed the zip lock just as we arrived at the rental car facility. As soon as I got off the bus, I tossed the contents into the nearest trash can.

Coca Cola sometimes helps settle my stomach when I'm nauseated, so I purchased one from the machine that was in the facility. I was obviously not well enough to hop in a car and drive, so I sat down in a chair while I sipped on my drink. The pain was at a 10. I contemplated asking someone to help me get an ambulance. I still couldn't think straight, but I knew I wanted to lie down on the bed in my hotel room.

I don't remember how much time passed before I got the strength to get up to find my rental car, but the pain had improved a bit to an 8. I think it must have been the combination of two Extra Strength Tylenol, two Motrin, and the caffeine in the Coke that was helping my headache.

I finally made it to my car and eventually got to the hotel. I was on the bed as soon as I entered the room.

My incapacitating headache lasted nearly four hours before I started to feel human again. My head still hurts a great deal, but it's not nearly as bad as it was earlier today. I would rate it at about a 6 at this time.

The worst part about all of this is that I am away from home traveling on business alone. I will not be home until Sunday, so I really hope I don't get another severe headache this week. Of course I'll be telling my doctor about this incident as soon as I get the chance.

Today's Activities: travel for work. Today's Most Annoying Symptoms: severe migraine, nausea, exhaustion, muscle fatigue, general weakness.

Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 10 earlier today, currently 6

The Best Birthday Present Ever

2009-10-30T19:05:00.004-05:00

My birthday was this week, and I've got mixed feelings about it. I'm 31 now. For me my birthday felt like yet another year of my young life had passed without any major improvement in my health.

Sure I'm healthier now than when I was in my mid 20's and unable to work, but I'm still not healthy. I still can't get back into martial arts (which I practiced for over 10 years before I got too sick to continue). I still can't go for long walks with my husband. I still have trouble going up a flight of stairs. I still don't have a social life or do all the things that healthy people my age do. I still can't sing and perform like I did when I was hoping to become an opera singer.

I've already lost my 20's to CFIDS. I really don't want to lose my 30's, too. While I am thrilled at the recent research on XMRV and increased awareness of CFS, I am still afraid of losing another decade to CFIDS.

On the upside, I am making the most of my life with CFIDS. I got married to a prince who loves me for who I am and takes on more responsibilities than a young husband should. I have managed to work for the past four and a half years (a miracle!) in a job I enjoy. I have a fantastic cat named Callie who loves to snuggle (we take lots of naps together). I discovered Netflix. I've become an advocate for others with this disease, most of whom are sicker than I am. I know who I am and what is important to me.

Now back to the point of my post: the best birthday present ever.

My husband Kenny and I purchased our current bed and mattress about three years ago. It was a bit firm, but I thought it would grow on me. It didn't. Not long after we got the mattress, I started talking about getting a one of those memory foam mattress pads. I thought that one to two inches would be perfect because it would be thick enough to create a nice padded feel, but thin enough that Kenny would still be able to enjoy the firmness of our mattress.

I kept talking but not buying. I regularly surfed the internet for prices on such mattress pads. They all seemed too expensive to purchase, so I never got one.

Well, I finally got one -- as a birthday present! My parents ordered it for me because they've heard me talk about getting one for the past three years.

I have to say that it's the best birthday present ever! I've had the chance to sleep on it for a week now. The bed is so comfortable that it has helped my quality of sleep. I am able to fall asleep a little faster, and I have been able to stay asleep a little more easily (though my sleep is still far from perfect). Hooray for small improvements!

Thanks, Mom and Dad!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, itchiness inside ears.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 3

Emerging from Survival Mode

2009-10-29T19:57:00.002-05:00

I've been back in town since Saturday, but I've been in survival mode since then.

When I travel for work, I have to conserve every ounce of energy possible and rest as much as possible. If I don't do these things, I'll have a big crash during or after my trip. Sometimes after a trip I can feel that I'm on the verge of a major crash. That's when I go into survival mode.

I should probably explain what I mean by "survival mode."

I can usually still work when I'm in survival mode, but not always. Survival mode is when I use the minimal amount of physical and mental energy necessary to get through the day. It means going to bed earlier and waking up later. It means I eat a protein bar for breakfast instead of using energy to have cereal and yogurt. It means I avoid going upstairs to the computer (I've got a lot of catching up to do on other people's blogs!). It means no cooking, cleaning, or housework. It means less talking, moving, and thinking.

Today is the first time I've been on my computer at home since before my trip. I'm glad that I've finally started feeling better because I have another trip coming up. I leave Sunday!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, itchiness inside ears.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 3

Video: XMRV on Good Morning America

2009-10-19T20:14:00.007-05:00

I think this interview just happened this morning...

Thanks to Lori for bringing this interview to my attention!

Today's Activities: travel for work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, sore back, mild headache, nausea.

Mood (10 is best): 8
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

P.S. Happy 1st Birthday to my youngest niece!

Traveling with CFIDS is Rough

2009-10-18T19:52:00.002-05:00

Hello from California! I'm in the Golden State this week on business. Just thought I'd check in with a short post since I was already online checking my work email.

Traveling with CFIDS is rough.

Carrying luggage, walking through airports, and flying (on a four hour flight!) is exhausting. Throw in a dash of migraine and a pinch of motion sickness, and you've got a recipe for serious discomfort.

Luckily, my dash of migraine didn't turn into to a full-blown migraine, but I did end up taking one Extra-Strength Tylenol and one regular Motrin (thank goodness for hotel mini-marts).

I'm going to get ready for bed now. Fortunately, my first appointment tomorrow isn't until 9am.

Maybe one day I'll post some advice about traveling with CFIDS.

Today's Activities: travel for work. Today's Most Annoying Symptoms: exhaustion, severe headache (beginning of a migraine), nausea.

Mood (10 is best): 8
Energy (10 is best): 3
Physical Discomfort (10 is worst): 8

An Eventful Week

2009-10-17T20:02:00.003-05:00

Wow, I'm still processing all the events of the past week or so. A quick recap:

XMRV linked to CFIDS/CFS/ME...enough said.
In addition to my already known deficiencies, I am also deficient in vitamin B2 and coenzyme Q-10.
I got the flu shot and have made it to the weekend without a major crash (hooray).
My husband and I were officially accepted into the Georgetown CFS study.

Wow!

A few details/updates:

I went to see my regular doctor (PCP who treats a lot of CFS and HIV/AIDS patients) on Friday to go over my recent blood tests. She is just as enthusiastic about the XMRV discovery as people with CFIDS. She started talking about antiretrovirals and their possible application, as well as the future diagnostic test for XMRV. I left that appointment feeling so hopeful. It has meant the world to me to have a doctor who believes and understands the impact of CFS.
My temperature was down to a healthy 98.6 on Thursday, but went back up to 99.0 on Friday. Today it's back down to 98.6. I've been especially exhausted and have felt pretty awful this week, but I've made it to the weekend without a major crash! This was a "good" flu shot year.
I will be leaving for another business trip tomorrow. This time I'll be gone a week, so I don't know if I'll be posting regularly or not until I get back.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, mild headache, nausea, sore left and right lymph nodes in neck.

Mood (10 is best): 8
Energy (10 is best): 4 (after sleeping 12 hours last night)
Physical Discomfort (10 is worst): 3

P.S. Happy Belated Birthdays to my Mom and Mother-In-Law!

I'm in the Georgetown CFS Study!

2009-10-14T19:03:00.007-05:00

I'm in the Georgetown CFS Study, and so is my husband Kenny (he's a healthy control subject)! The study is called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

I got verbal confirmation last week of our actual study dates (i.e., when they want us to be at the hospital), but I wanted to wait until I received written confirmation before I shouted about it on my blog. The confirmation came in late this afternoon. We'll be flying to Washington, DC in November!

I've been hoping to get into this study since August 1 (see my August 1, August 18, September 10, September 22, and September 27 posts for background).

This post is relatively short because I'm exhausted and brain fog is closing in, but I just had to post this update.

If you're keeping up with my flu shot update, you'll be happy to know that I still haven't had any sort of major crash. I'm exhausted, but still ok.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, sore right and left lymph nodes in neck, low-grade fever 99.3.

Mood (10 is best): 8
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

P.S. If you know any healthy people who live near DC or are willing to travel there, please tell them about this research. The research coordinators are in need of more healthy volunteers. Volunteers will be compensated $400. Click on the study's name above for the official research description and contact info.

So Far, No Crash

2009-10-13T18:47:00.007-05:00

I'm still feeling pretty awful from my flu shot yesterday, but so far I haven't had a big crash. Of course, I'm trying to take it easy so as not to upset the delicate balance that is my immune system. I still feel achy all over, and the lymph node under my right armpit is starting to hurt; but on the upside, my low-grade fever is slightly lower at 99.0.

Have I mentioned that I rarely take any headache or fever medications?

Even though I get headaches and run low-grade fevers often, I almost never take medications to alleviate the symptoms (I can't even remember the last time I took anything). I think part of the reason is because I have taken so many prescription and over-the-counter medications for so many years, that I'm trying not to add anything else foreign to my body. Maybe it's my form of rebellion.

The exception to my no-medication mantra is when I feel a migraine coming on (which has been a rare occurrence this year). Anyone who has had a migraine will understand!

I'm hoping that this no-major-crash thing sticks around. If I make it to the weekend without a major crash, that means this year's flu shot was a good one for me. I'm feeling hopeful.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, 99.0 low-grade fever, nausea, mild vertigo, full body aches, painful injection site, mild itching. Update (later evening): diarrhea.

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 6

Got the Regular Flu Shot Today

2009-10-12T20:57:00.004-05:00

Ugh. I got the regular flu shot today, and my body is not enjoying it. I ache all over, have a low-grade fever, and just had a nasty bout of diarrhea (which I doubt has anything to do with the shot, but it certainly adds to the discomfort). Basically, this is what the beginning of a crash feels like.

I know there is some debate about whether people with CFIDS should get the shot, but both my regular PCP (who treats a lot of patients with CFIDS) and my allergist have always recommend it for me...especially because I have asthma.

I now make it a priority to get the flu shot every year because the two years I decided not to get the shot (ages 23 and 24...or was it 22 and 23?), I caught the full blown flu with 101-104 degree fevers to boot. Having the flu with asthma is awful and scary. With the flu shot, I've managed to avoid any major cases of influenza.

I'm hoping that I don't have a big crash as a result of this injection. Sometimes I bounce back to "normal" quite quickly after the flu shot, sometimes I don't. Only time will tell.

Today's Activities: home (1/2 day), work (1/2 day). Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, 99.2 low-grade fever, nausea, full body aches, painful injection site, diarrhea, mild itching.

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 7

More Deficiencies in My Blood

2009-10-10T15:20:00.014-05:00

Well, I finally got back my lab results from the micronutrient blood tests that I first mentioned in my July 2 post Human Pin Cushion and again on September 10 in All Sorts of Updates.

These test results add to the ever growing pile of scientific evidence that my body is not functioning effectively.

The results indicate that I am currently deficient in:

Vitamin B2 (by a lot...this surprised me a lot)
Glutathione (old news...I've known this for years)
Coenzyme Q-10 (by a lot...this surprised me a little)
Overall antioxident function (probably because of the Coenzyme Q-10 and glutathione deficiencies...not surprising at all)

The Vitamin B2 deficiency surprised me because it's not a very common deficiency. What's even more amazing about this finding is the role of vitamin B2 in the body. According to MedicineNet.com:

Vitamin B2 helps break down carbohydrates, fats and protein for use by the body. Its role in maintaining an energy supply for the body is crucial, for it helps convert carbohydrates into adenosine triphosphate (ATP), a compound needed to store energy in muscles.
The signs and symptoms of vitamin B2 deficiency include visual problems, such as cataracts and excessive sensitivity of the eyes to light (photosensitivity). There may also include reddening of the lips with cracking at the corners (cheilosis), tongue inflammation (glossitis), skin inflammation (dermatitis), swelling (edema), dizziness, hair loss, insomnia, trembling and delayed mental response.

Of the symptoms listed, I experience photosensitivity, reddening and cracking of the lips, dermatitis, edema (especially in my hands and fingers), dizziness, hair loss, insomnia, and delayed mental response. And, of course, I have a documented lack of ATP. Woah.

In addition to the newly listed deficiencies, I've previously been diagnosed with vitamin D, iron, glutathione, and cyclic-AMP (ATP) deficiencies. Fortunately, my vitamin D and iron levels have been under control for a while thanks to all the extra supplements I've been taking.

I've added the following supplements to my growing list of daily supplements (these dose recommendations came along with my lab results):

50 mg Vitamin B2
150 mg Coenzyme Q-10

The test results also show that I am just barely adequate in Vitamin B12, Folate, and Pantothenate. I could stand to increase my Vitamin B6 (Pyridoxine) levels a bit, as well.

As a result of the lab results and recommendations, I have also decided that this is the right time to increase my doses of the methylation protocol that I mentioned in Starting a New CFS Treatment Plan. I'm hoping the increase will help with my B12 levels among other things.

Previously I was taking -- every other day -- the recommended 1/4 tablets of the Actifolate and the Intrinsic B12/folate, 1/4 tablet of the Neurological Health Formula, the recommended 1 softgel of the Phosphatidyl Serine Complex, and a 1/2 tablet of the Activated B12 Guard.

I have now increased to 1/2 tablet of the Neurological Health Formula and a full pill of the Activated B12 Guard. I am continuing to take the recommended 1/4 tablets of the Actifolate and the Intrinsic B12/folate and the recommended 1 softgel of the Phosphatidyl Serine Complex. I have decided to continue this treatment plan on an every other day basis.

Once my body adjusts to all the extra supplements, I plan to start taking the methylation protocol on a daily basis...which I hope will help my folate levels.

I hope to get this micronutrient test done again in about 6 months to see if I have made any improvements. I also hope that my energy starts to improve with the added supplements.

With all these changes in my supplements, I'm going to try to post an updated list soon.

...

I just figured out how to post my latest medications and supplements document (thank you to Sue Jackson for the format). Click on the image below, and it should take you to a bigger version.

Update at 5:15pm: In case you were wondering where I got my micronutrient testing done, it was through SpectraCell Laboratories.

My GI doctor ordered the test at my request. It had already been determined that I was deficient in vitamin D and iron, but I wondered if I could be deficient in even more nutrients. At the time my test was to be ordered (in July 2009), I was told that my particular insurance plan would not cover this expense. I wanted the test done anyway. It was well worth the cost.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, 99.1 low-grade fever (again!), nausea, itching.

Mood (10 is best): 8
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Discovery: XMRV Retrovirus Linked to CFS

2009-10-09T12:57:00.024-05:00

Image of XMRV from Whittemore Peterson Institute

Wow! This discovery is all over the news. Check out these articles:

Scientific American "Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis"

National Cancer Institute "Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome"

Medical News Today "Retrovirus Linked To Chronic Fatigue Syndrome"

New York Times "Virus Is Found in Many With Chronic Fatigue Syndrome"

Reuters "Study isolates virus in chronic fatigue sufferers"

The Independent "Has Science Found the Cause of ME?"

Nature "Virus linked to chronic fatigue syndrome"

NPR "Virus Linked To Chronic Fatigue Syndrome" (includes link to audio recording)

ABC News Video "CFS Linked to XMRV Virus" (approx 1 minute)

CFIDS Association "Landmark CFS research reported in Science magazine"

BBC "ME virus discovery raises hopes"

US News and World Report "Retrovirus May Be at Root of Chronic Fatigue Syndrome"

The Australian "Chronic fatigue linked with virus"

The Wall Street Journal "The Virus That Links Prostate Cancer & Chronic Fatigue Syndrome"

Telegraph "Most cases of chronic fatigue syndrome linked to virus"

The Washington Post "Virus Associated With Chronic Fatigue Syndrome"

WebMD "Retrovirus Linked to Chronic Fatigue Syndrome"

Whittemore Peterson Institute for Neuro-Immune Disease: Overview and Q&A about their research

This post is short because I'm on my lunch break. I'll add new links as I find them.

Update: The list of articles goes on and on. Too many to list! I can't even express in words how much hope this gives me...

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, nausea, itching.

Mood (10 is best): 9
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Video: What Would You Do?

2009-10-07T21:45:00.004-05:00

The CFIDS Association of America created this moving video using responses from 1,784 CFS patients to the question: "What would you do if you were completely well tomorrow?"

The CFIDS Association has also created a new website called Solve CFS, as part of a campaign to raise $5 million for research by the end of 2010. If you look closely at the website's banner, you'll see Kenny's and my photos. :)

Today's Activities: traveling for work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, nausea, probable low-grade fever, itching.

Mood (10 is best): 6
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

Another Itchy Update

2009-10-06T14:52:00.008-05:00

I'm happy to report that the itching is loads better than it was when this whole ordeal started. I'm still getting itchy spells, but they are not nearly as intense or long-lasting as before. Amazingly, I haven't used any diphendydramine (generic Benadryl) or any other type of antihistamine since Thursday, October 1.

I am now convinced that my horrible full-body itching spell is a result of my stopping the cetirizine (generic Zyrtec) on Wednesday, September 23.

What's odd about the itching is that there was NO rash that accompanied the itching. I have eczema, so I'm accustomed to having visible evidence of intense itching. I have to say the whole experience has been a little surreal. Anyway, my hope is that itching will be completely gone within another few days.

On the downside, I'm dealing with low-grade fevers again. After a few days of normal temperatures, I had a 99.1 temperature yesterday. Bummer. I haven't taken my temperature today, but I feel like I have a fever.

I'm writing this post at the airport. I have a quick business trip this week. Today is a travel day, tomorrow I work, then I fly back home on Thursday. Luckily, I don't have anything to do other than check into my hotel and eat dinner once I arrive at my destination.

Oh, CFIDS, I'm ready for you to take a hike!

Today's Activities: work & traveling for work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, sore muscles, nausea, itching, mild headache, probable low-grade fever.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Update at 8:30pm on 10/6/09: One of the symptoms of my CFIDS that I dislike the most is nausea. Flying while nauseated is not my idea of a good time. Fortunately, I did not throw up on the plane, though I might have if the flight had been any longer.

I started feeling better by the time I got to a restaurant for dinner, so I even ended up ordering a dessert -- vanilla bean cheesecake. Bad idea. I started feeling car sick while driving back to the hotel, and once I got to my room, I threw up. Ugh. I hate throwing up. And the worst part is that I am still nauseated.

Itchy Update

2009-10-03T20:33:00.008-05:00

The itching seems to be getting better...slowly but surely. (See I'm Insanely Itchy! for background.

Here's my timeline of itchiness:

Wednesday, September 23: Stopped cetirizine (generic Zyrtec)

Saturday, September 26: Starting itching a LOT, took 50 mg diphendydramine (generic Benadryl) before bed

Sunday, September 27: Itching continued, took 50 mg diphendydramine before bed

Monday, September 28: Itching continued, took 50 mg diphendydramine before bed

Tuesday, September 29: Took nothing because allergy testing was to happen the next day.

Wednesday, September 30: Itching worse than ever, took 50 mg diphendydramine before bed

Thursday, October 1: Itching not quite as bad, took 25 mg diphendydramine before bed

Friday, October 2: Took nothing because itching not quite as bad

Saturday, October 3: Plan to take nothing because itching not quite as bad

Now don't get me wrong, the itching is still very uncomfortable. I'm just trying to stop taking any antihistamines for now to see if I really was having a reaction to stopping the cetirizine (generic Zyrtec).

I've discovered lotion that seems to be soothing my skin a bit. It's called Itch Relief Lotion with Tea Tree, E and Chamomile by Derma E. It's natural, paraben-free, and does not contain any cortisone, so I'm able to slather copious amounts all over my very itchy body. It is really stinky going on, but it dries pretty quickly.

I'm also using lots of ice packs.

Aside from all the itchy skin, my other allergies (stuffy nose, itchy ears and eyes) have not really bothered me much even though I haven't taken any antihistamines for about 48 hours. I definitely think I have my immunotherapy (allergy shots) and regular nasal washing to thank.

As I'm writing this post, the palm of my right hand is starting to itch intensely. I'm going to get an ice pack.

Today's Activities: home. Today's Most Annoying Symptom: ITCHING!

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5 (because of the itching)

I'm Insanely Itchy!

2009-09-30T20:14:00.007-05:00

I'm feeling much better than before. My low-grade fever reached its peak at 99.5 degrees Fahrenheit on Monday. By Tuesday evening my temperature was down to 98.8, and today it was 98.4 at last check (for reference, 98.6 is considered perfect).

The thing about low-grade fevers is that they are high enough that I feel really awful (with headache, achy body, generally feverish, etc.), but they are low enough that I am still pretty functional. My fevers usually hang around 99.0 to 99.2, so the 99.5 on Monday was a bit of a surprise.

Anyway, fevers are not what this post is supposed to be about....

Just so you know, right now I am insanely itchy.

So itchy, in fact, that I've scratched so hard in a few places that I've unintentionally drawn blood. It is taking a lot of self control to not scratch long enough for me to type.

Why am I itchy, you ask?

Here's the background. I've had severe allergies since childhood. A few years ago I had allergy testing and started immunotherapy (allergy shots) for grasses, trees, and dust mites. I've still been experiencing allergy symptoms even though I've been on allergy shots, so I wondered if I had developed a new allergy to my cat whom I've had for just two years (see Healing Power of Pets for a photo of my cat, Callie).

I went to see my allergy and asthma doctor last week, and she scheduled me for a cat allergy test (to be done today).

I was instructed to stop my antihistamines (generic Zyrtec and allergy eyedrops) for one week before my test; however, I could take Benedryl up to 24 hours before my test if necessary. Within a few days of my stopping my antihistamines, I started feeling itchy in my hands and feet. Benedryl was the only thing that helped the itching and allowed me to sleep.

After a long, itchy week (which included my weekend of low-grade fevers) I finally had my cat allergy test this afternoon. On the bright side, I'm not allergic to cats. Hooray!

On the downside, now that I've been a week off Zyrtec my entire body is itchy. Really itchy.

All day I thought that the first thing I wanted to do when I got home was take my antihistamine to stop the itching. However, I also wondered why I was itching so terribly because I did not remember ever itching this much in this way before (except when I was experiencing anaphylaxis after an allergy shot gone awry). It is important to note that I have eczema, but what I am experiencing is not an eczema itch.

Rather than popping a Zyrtec when I got home, I got online. I wondered if stopping an antihistamine after taking it for a long time would cause itchiness, so I searched for "itchy after stopping antihistamine."

Amazingly, I stumbled upon a woman's blog called "Quit Zyrtec, Get Itchy!"

Wow. It described what I seem to be experiencing.

I'm going to test this possibility (i.e., that I am itchy because I stopped taking Zyrtec) by not going back on the Zyrtec for a while (or never again...haven't decided yet). So that I do not go completely insane (and so that I stop scratching until I bleed), I have to take Benedryl to help stop the itching at night so that I can sleep. I may eventually try switching to a low dose Claritin.

I'll be sure to post updates.

I need an ice pack right now.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, mild headache, eczema flare up on right ankle, ITCHING!

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 8 (because of the horrible full-body itching)

Sick & Georgetown Update

2009-09-27T20:44:00.009-05:00

Sorry about the longer than expected absence. I think I'm having a delayed crash from my trip to the Midwest (see Back from the Midwestern US for background). I've been sick with a fever all weekend. I've slept about 16 hours per day (including naps) since Friday and haven't felt up to blogging (or really doing anything).

Ugh. I'm sick of being sick.

I'm still not feeling especially great right now, but I felt the need to post my promised update about Georgetown (see Georgetown CFS Study and Hoping to be a Human Guinea Pig for background info).

The Georgetown research coordinator called me a little over a week ago to let me know that they wanted to schedule me for October. He asked me when I was not available, so I gave him those dates. He then told me he'd get back to me soon with dates they could schedule me. I then asked if they still needed more healthy volunteers, and he answer was a resounding yes. I promised that I would get the word out.

I was really excited after this phone call, thinking that this was actually going to happen for me.

I still haven't heard back...and October is just a few days away. This situation has been dragging on since August 1. I'm suspecting (and a few others have mentioned this to me as well) that they need many more healthy volunteers before they can bring in more CFIDS patients. Unfortunately, it seems that not many healthy people are willing to undergo a voluntary lumbar puncture. Go figure.

Another hitch in the plan is that there is a chance that I may not be able to get the time off from work to participate in the study. This possibility is upsetting to me. Of course, I hope everything works out because it would mean a lot for me to be a part of significant CFS research. I'm not exactly sure why participating in this study is so important to me. It just is.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, eczema flare up on right ankle, low-grade fever.

Mood (10 is best): 5
Energy (10 is best): 2 (after sleeping all day), 1 (most of this weekend)
Physical Discomfort (10 is worst): 4

Research Alert: Healthy Volunteers Needed for Georgetown CFS Study

2009-09-22T20:27:00.020-05:00

Do you or does someone you know live near Washington, DC (or are you willing to travel there at your own expense)?

Georgetown University is conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

I have volunteered for this study (will post an update about this soon); however, they still need many more HEALTHY individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap) and other minor procedures including blood tests. There is some financial compensation for completing the study.

Call 202-687-8231 or email cfsresearch@georgetown.edu if you are interested.

Please spread the word. Forward this post, email your friends and loved ones, post info on your blog or message boards, or just stand outside and shout about it.

This is the kind of serious research we need more of!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, nausea, light headed.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Back from the Midwestern US

2009-09-20T19:33:00.007-05:00

I'm back from my whirlwind business trip to the Midwestern United States. In just one week, I visited Iowa, Kansas, Missouri, Nebraska, and Ohio.

I saw so many corn fields on my trip that I decided I needed to get my picture in front of one. That's me in the photo. A friend of mine that I was able to visit in Nebraska took the picture.

Needless to say, the trip was exhausting. Thank goodness I was able to find plenty of time for daily naps.

My body is in recovery mode, so I spent most of today sleeping.

I have to admit it is pretty odd that someone with CFIDS would have a job like mine that requires travel. Travel is one of the most exhausting things a person with this disease can do. I estimate that I end up traveling for work maybe four or five weeks per year (all spread out).

What makes this kind of travel bearable for me is that I am able to sleep well on planes (and any moving vehicles, really). I often sleep from the moment I sit in my seat (before takeoff) until the plane lands. My trip schedules also allow me to take regular afternoon naps or go to bed early.

Of course, these trips do take their toll on me. Still, I enjoy them because I love to travel.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, drowsiness, muscle fatigue.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 2

P.S. Happy (belated) Birthday to my Dad!

Blogging for Invisible Illness Week

2009-09-15T13:07:00.000-05:00

Yesterday marked the start of National Invisible Chronic Illness Awareness Week, so I am blogging for invisible illness awareness.

I was supposed to blog yesterday and write a meaningful post, but my CFIDS got in the way. I was just too tired. Go figure.

I am currently in the Midwest United States on a grueling week-long trip to five different cities for work. These trips are so tiring that I don't have much energy left for anyone or anything, including blogging.

Fortunately, my fever seems to have left me, and there is time between appointments and travel that I am able to take daily naps. I've also been able to eat some fantastic meals!

Anyway, I'm too tired to write anything more, so I'm going to take a nap. I should get back to my normal blogging next week when I'm back home.

Today's Activities: out of town for work. Today's Most Annoying Symptoms: exhaustion, drowsiness.

Mood (10 is best): 6

Energy (10 is best): 2

Physical Discomfort (10 is worst): 2

Promising News from the CDC?

2009-09-13T12:42:00.000-05:00

It seems that the Centers for Disease Control and Prevention (CDC) is paying more attention to the CFS community and advocates. On September 1, 2009, they posted the following message on their website:

Input on CDC CFS Strategic Research Plan
Between April 15 and July 30, 2009, CDC received just over 1,000 e-mails in response to a request for input to its 5-year CFS strategic plan. Most of the e-mails utilized material from the CFIDS Association of America’s Web site or supported CFIDS recommendations, reflecting the effectiveness of CFIDS advocacy efforts. We greatly appreciate this overwhelming response, since it provided an opportunity for members of the CFS community to share their concerns.
Some emails from the general public provided comments specific to the strategic research plan and we also received comments on the strategic plan from two scientific societies (the International Association for Chronic Fatigue Syndrome, and the American Academy of Environmental Medicine), scientific investigators, health care providers, and patient advocacy groups (CFIDS Association of America, Pandora, Connecticut CFIDS & FM Association, National Women´s Health Network, Rocky Mountain CFIDS/FMS Association, Phoenix Rising, Wisconsin ME/CFS Association, Share Care & Prayer, CFSActs, National CFIDS Foundation, Invest in ME - UK).
CDC´s CFS research program is currently categorizing comments concerning the strategic plan into specific subject areas.
To see the full CFS Public Health Research Program Draft 5-year Strategic Plan, click here.

It's wonderful to feel as though my effort to give public testimony at the CDC in Georgia earlier this year was worth it.

Only time will tell if the CDC actually takes all the comments seriously and incorporates them into the Strategic Plan.

I'm crossing my fingers, but I won't hold my breath.

Today's Activities: out of town for work. Today's Most Annoying Symptoms: headache, muscle fatigue, drowsiness.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5

All Sorts of Updates

2009-09-10T20:23:00.003-05:00

Well, today is Day Three of my latest low-grade fever. It's bad enough that I feel really awful (more so that usual, that is), but not bad enough for me to stay home from work (if you've been following my blog closely for a while, you'll know I'm short of sick/vacation leave).

BLOOD TESTS

I've been meaning to post the results of my most recent vitamin D and iron (ferritin) levels for a while, but I kept forgetting (brain fog, you know). Both my ferritin and vitamin D levels went down a little since the last test.

My ferritin level was measured at 38 ng/mL. Previously, it was 41 (last test), 50, and 17 (first test). My GI doctor would prefer to see my ferritin level at around 70, though she's just happy with it being so much higher than 17. Currently, I'm taking high levels of prescription iron only every other day because taking it every day caused massive constipation. I think I'm destined to be on the lower side of normal when it comes to iron levels.

My vitamin D level was measured at 40 ng/mL. Previously, it was 49 (last test), 41, and 29 (first test). My GI doc would like to see a level higher than 50. I'm going to up my dose of vitamin D to 2,000 IU per day (I've been taking 1,000 IU per day since my first vitamin D test).

In my July 2 post Human Pin Cushion, I mentioned a micronutrient blood test for which I had blood taken. Over a month passed, and I didn't hear anything from my doctor or the lab. I called my doctor's office who, in turn, called the lab who said that the sample had been damaged so they couldn't run the test. Great. They didn't even bother to inform anyone about this.

I ended up going back to get blood drawn for this test a week or so ago (can't remember exactly when). I'm still looking forward to the results because they'll indicate if I'm missing essential vitamins or minerals.

HUMAN GUINEA PIG OPPORTUNITIES (a.k.a. research)

See Hoping to Be a Human Guinea Pig for background. I still have not had the opportunity to give a single drop of blood or other bodily fluid for the sake of CFS research. This disappoints me. Researchers at both Georgetown and the University of Illinois - Chicago have told me that they'll get back to me about my possible participation. So far, I've heard nothing. Nada.

On the upside, I'm participating in a fatigue study through the University of Utah. I've also submitted surveys for the University of Michigan's Chronic Illness Survey and the National Fatigue Survey through the Florida Institute of Technology's Fatigue Management Institute. I'm interested in looking into the University of New England - Australia's fatigue study. I plan to do that when I have the mental energy.

I'm really much bigger on the blood and bodily fluids kind of research, but at least surveys are better than nothing.

MY NEW TREATMENT PLAN (methlyation protocol)

On July 13 I announced that I was Starting a New Treatment Plan. Unfortunately, there's not much to report yet because I haven't gone back to get my glutathione level tested again. I'm still taking the doses I listed in my treatment plan post every other day.

Physically, I don't feel any improvement, but that doesn't necessarily mean I'm not improving. According to the research and anecdotal information from others on the protocol, some people go through a period of "detox" that makes them feel worse (or just not better) before they actually start to feel better.

I do know that my body chemistry has changed or is changing. I used to feel cold very easily nearly all the time (even when others felt warm). Now I get what seem like hot flashes, where my face flushes red and I start to sweat profusely.

All I can say is that I'm not giving up, and I will report any changes in a future post.

Today's Activities: work. Today's Most Annoying Symptoms: headache, nausea, dizziness, muscle fatigue, sinus pressure, low grade fever.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 6

30 Things About My Invisible Illness...

2009-09-07T11:04:00.005-05:00

From the Invisible Illness Week website:

We've all seen the list “20 things about me” “50 thing about me you didn't know…” They can actually be interesting if you want to get to know the person better! Well we've got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”
Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)

Let’s spread the word about II Week this way and it’s a wonderful way to share a little bit about your life. And don’t forget to add the last paragraph for people know where to find us!

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS...a.k.a. Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)), Irritable Bowel Syndrome (IBS), Polycystic Ovarian Syndrome (PCOS), asthma, and more...

2. I was diagnosed with it in the year: 2005, 1999, 2003, 1998, respectively.

3. But I had symptoms since: 2000 (probably earlier), don't remember, since puberty, 1996.

From this point on, I will be answering questions primarily with CFIDS/CFS/ME in mind.

4. The biggest adjustment I've had to make is: strictly limiting my physical activities and outings.

5. Most people assume: I'm young and healthy because that's how I appear on the outside.

6. The hardest part about mornings are: waking up

7. My favorite medical TV show is: House

8. A gadget I couldn't live without is: my two alarm clocks.

9. The hardest part about nights are: falling and staying asleep.

10. Each day I take 12-15 pills & vitamins. I also get regular allergy shots (immunotherapy) and additional shots for my CFIDS. See Current Medications and Supplements.

11. Regarding alternative treatments I: am open to them as long as data supports their efficacy and my physician approves their use.

12. If I had to choose between an invisible illness or visible I would choose: visible - people wouldn't question my illness if they could see it.

13. Regarding working and career: I will work as long as I am physically able. I am working to further my career as if I will be healthy the rest of my life. However, I live with the uncertainty that my illness may force me to leave the workforce altogether.

14. People would be surprised to know: I am a classically trained singer who was once on her way to an operatic career. Sadly, I no longer sing. I also wanted to attend medical school, but my illness forced me to choose another career path.

15. The hardest thing to accept about my new reality has been: all of my physical limitations.

16. Something I never thought I could do with my illness that I did was: become an advocate and meet with members of the US Congress on Capitol Hill.

17. The commercials about my illness: do not exist.

18. Some things I really miss doing since I was diagnosed are: international travel, martial arts, hanging out with friends.

19. It was really hard to have to give up: physical activity.

20. A new hobby I have taken up since my diagnosis is: advocacy for people with CFS.

21. If I could have one day of feeling normal again I would: cook, clean, and go grocery shopping so that my husband wouldn't have to.

22. My illness has taught me: patience.

23. Want to know a secret? One thing people say (especially when they know I am sick) that gets under my skin is: "You look good!" Of course, I look good on the outside. I have an INVISIBLE illness. I feel terrible on the inside.

24. But I love it when people: genuinely want to learn more about my illness.

25. My favorite motto, scripture, quote that gets me through tough times is: "Everything happens for a reason." (Also, "What doesn't kill you makes you stronger.")

26. When someone is diagnosed I’d like to tell them: there is a vast online community of others with this disease who understand what you are going through. There is no need to feel alone.

27. Something that has surprised me about living with an illness is: the amount of support that is out there, as well as the amount of disbelief that is out there.

28. The nicest thing someone did for me when I wasn't feeling well was: make me homemade chicken soup and bring it to me in bed (my husband Kenny has done this on more than one occasion).

29. I’m involved with Invisible Illness Week because: I am passionate about CFS education and advocacy.

30. The fact that you read this list makes me feel: wonderful.

Find out more about National Invisible Chronic Illness Awareness Week at http://invisibleillnessweek.com/.

Today's Activities: home (hooray for Labor Day). Today's Most Annoying Symptoms: headache, dull pain in lymph nodes in neck, muscle fatigue, sinus pressure.

Mood (10 is best): 6

Energy (10 is best): 5 (hooray for long weekends!)

Physical Discomfort (10 is worst): 4

I Can't Remember What I Forgot

2009-09-05T20:51:00.006-05:00

What was I saying?

What were we talking about?

I'm sorry, would you say that again? I didn't understand.

Remember when we were talking the other day about the thingy in the whatchamacallit? What did we say about that? I can't remember.

The MRI I had last year because of the severe migraines I was experiencing showed no brain tumors or evidence of MS. There is nothing obviously wrong with my brain, yet my brain is the constant location of some ongoing battles: brain fog and memory problems.

Brain fog and memory problems are two nebulous symptoms of CFIDS that manifest themselves in varying degrees of severity. The combination of the two make communicating intelligently a much bigger challenge than before I got sick. Since getting sick about ten years ago, I feel as though every year I lose a few more IQ points.

When I am experiencing brain fog, I feel as if my brain is trying to wade through thought processes in a thick muck. It takes longer for me to comprehend what is being said or what I am trying to read. When my brain fog is really acting up, everything might as well be spoken or written in Martian.

Everyone forgets things from time to time, but I have found that my forgetfulness has become a problem. If I don't write important (or even unimportant) tasks down, I will not remember to do them. I have to take copious notes during meetings, or I will most likely forget most of what was said. Ironically, it is difficult for me to take notes during meetings because of my brain fog.

The worst part about my memory problem is that I sometimes forget conversations or occurrences completely. That is, I will have no residual memory of the event whatsoever. It's somewhat alarming when this happens.

Fortunately, I have come up with various techniques to compensate for some of my brain fog and memory problems -- mostly asking questions and taking notes. Still, I would really like to have my brain back to normal. I can't wait until I'm healthy again!

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, brain fog, intense intestinal discomfort.

Mood (10 is best): 6
Energy (10 is best): 4 (after sleeping all day)
Physical Discomfort (10 is worst): 5

P.S. Happy 42nd Birthday to my brother!

Advocacy Alert: CFS Advisory Committee to meet in October

2009-09-04T20:40:00.004-05:00

This just in from the CFIDS Association:

CFS Advisory Committee to meet in October

The federal CFS Advisory Committee will meet next on October 28-29, 2009 in Washington, D.C. The meeting is open to the public and time has been reserved on the agenda to hear testimony from members of the public.

Posted below is the September 4, 2009 meeting notice from the Federal Register, which can be viewed at http://frwebgate4.access.gpo.gov/cgi-bin/PDFgate.cgi?WAISdocID=068903155476+2+2+0&WAISaction=retrieve.

[Federal Register: September 4, 2009 (Volume 74, Number 171)]
[Notices]
[Page 45857]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr04se09-63]

=============================================
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Meeting of the Chronic Fatigue Syndrome Advisory Committee
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of Public Health and Science.

ACTION: Notice.

-----------------------------------------------------------------------

SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

DATES: The meeting will be held on Thursday, October 29, 2009, and Friday, October 30, 2009. The meeting will be held from 9 a.m. until 5 p.m. on both days.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201; (202) 690-7650.

SUPPLEMENTARY INFORMATION:
CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of the knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic, and research communities about advances in chronic fatigue syndrome.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs, when it is finalized. In addition, the meeting will be WebCast. Details will be posted to the CFSAC Web site as they become available.

Public attendance at the meeting is limited to space available. Individuals must provide a photo ID for entry into the building where the meeting is scheduled to be held. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person. Members of the public will have the opportunity to provide comments at the meeting. Individuals who wish to address the Committee during the public comment session must pre-register by October 14, 2009. Any individual who wishes to participate in the public comment session should call the telephone number listed in the contact information or send an e-mail to cfsac@hhs.gov to register. Public comments will be limited to five minutes per speaker.

Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages. Contact information for the Executive Secretary is listed above.

Dated: August 20, 2009.
Wanda K. Jones,
Executive Secretary, CFSAC.
[FR Doc. E9-21334 Filed 9-3-09; 8:45 am]

BILLING CODE 4150-42-P

I attended the CFSAC meeting in May 2009 and gave public testimony. The day after I spoke, I started this blog. Unfortunately, I don't think I will be able to attend the October meetings because of my work schedule during those days. If my schedule changes, however, you can bet I'll be in Washington, DC for the meeting.

If you have CFIDS/CFS/ME (or if you know someone with it) and are physically and financially able to attend, I encourage you to go and give your personal testimony about how this horrible disease has affected your life.

If you can't go in person, give your story by phone if they allow phone testimony (they did last time). If you are not physically able to call in, then send in your written story. If it is too difficult to write, then know that there are people at the meeting who are still advocating for you.

The more we make our presence known, the bigger difference we'll make!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, brain fog, slightly achy lymph nodes in neck.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 3

Thief! Stealing our marriage (Post by Kenny)

2009-09-01T20:20:00.008-05:00

The following post is the second of several by my husband, Kenny. Thanks for reading! ~Alyson

***********

Having a loved one that has CFS is like being ripped off. This disease affects everything. And when I say everything I mean “EVERYTHING”. The emotions that I have and the quality of life are not even close to that of what Alyson has to go through. The tears and isolation that she endures is something that I compassionately and sadly endure with her. But, that does not neglect the point that this disease has stolen a lot from our marriage.

It is not an isolated disease that just affects one person, but robs the whole family of life. We don’t get to go on walks, workout together, go to parks or other physical activities without major consequences. Instead of having Alyson crash and burn, we limit, almost to non-existent our activities. Weekends are for recovery from long weekdays.

Please, if you don’t have CFIDS and are thinking that you do the same, wake up! You choose to lie around on the weekends without any action. Alyson is forced by having no energy. Completely different, not even comparable, don’t even go there!

If you really want to test the strength of your love and your commitment towards your spouse, try having one with this disease. Alyson does her best to help out, go on dates, and do some chores along with anything else she can muster the energy for. Even with sacrifice, her life along with mine is being high jacked. Stolen are the basic enjoyments for couples to enjoy one another. Things that too many couples take for granted. Not truly enjoying that walk with your wife, or that weekend drive through the country? That is a shame. Unfortunately, we don’t get that privilege along with many others.

I am not looking for sympathy, but I am trying to express the seriousness of this life altering disease. It does not just smack one person in the face; this illness spits, steals, mocks and walks away leaving an entire family in a ditch looking for some help. When other loved ones don’t fully acknowledge this, they too are kicking dirt in the ditch. Please don’t bury family and friends that are suffering. Having this disease is isolating enough that they don’t need any added misery.

Research Alert: U of New England, Australia - Fatigue Study

2009-08-31T19:12:00.001-05:00

Text from the CFIDS Association Bulletin Board (i.e., posted items are not subject to review):

Project Title: Predictors of subjective fatigue in three samples: chronic fatigue syndrome/myalgic encephalomyelitis and multiple sclerosis patients and university student controls. Investigators: Rhonda Brown, PhD.; Einar B. Thorsteinsson, PhD., University of New England, Australia.

The purpose of this study is to investigate the relationship between fatigue, stress, anxiety, depression, viral infection symptoms, sleep disturbance, and a number of specific stressors, unhealthy behaviours, psychosocial factors, and cognitions. Fatigue often has a physiological basis (e.g. viral infection), but previous research has shown that fatigue also has psychological aspects.

This research is intended to help us better understand the way in which psychological factors impact on fatigue over a period of time. Participants will be asked to complete set of questionnaires three times (i.e., now, 6 months from now, and then 12 months from now).

If you are interested in participating in this study, or would like more information before you decide, please click on this link: http://www.surveymonkey.com/s.aspx?sm=sAu4Ep2exYGsdAW_2bc6UQMg_3d_3d

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, brain fog, active eczema on left and right underarms, slightly achy lymph nodes in neck.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 4