The Best Birthday Present Ever

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

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

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

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

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!

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

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

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

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

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?

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

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

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)