I'm Losing My Hair (Part I)

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.

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

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:

1. Irritable Bowel Syndrome (yup, have that)
2. Food Sensitivities (have that one, too)
3. Yeast Overgrowth in Intestines (hmm...very possible)
4. 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

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

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!