Thursday, September 10, 2009

All Sorts of Updates

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).


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.


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


upnorth said...

Hey Alyson, I hope you end up getting in one of those studies...that would be excellent. As for the treatments, I DO hope something works...I tried a few month of anti-viral treatment once and was really disapointed when it didn't work, but it felt good at the time to at least be trying something...

Is your job full-time? Do they know you're ill?

Janis said...

I hate to be a cynic, but too many of the CFS studies are a waste of time because they are poorly defined and include people who don't have ME-CFS but who are just tired as well as some in the controls who do have CFS and haven't been diagnosed.

Re your ferritin. If I were you, I'd do the fecal anti-gliadin and the genetic test through unless your low iron is due to excessive menstrual bleeding.

annie's mom said...

Thinking of you, Alyson....


cinderkeys said...

I second upnorth's question. Is there any way you can work out accommodations with unpaid sick time? If you exert too much effort, you may find yourself unable to work at all.

alyson said...

Hi upnorth – Thanks! I’m waiting on tenterhooks because I really think that research that involves bodily fluids is the best and most useful kind of research for CFS. Surveys are interesting in that they can reach larger numbers at a cheaper cost and show trends; however, when it comes down to it, I think researchers really need to be looking at ways to give us some relief by dealing with biological data (not tell us more of what we already know based on not-as-scientific and subjective survey results).

Yes, my job is full time, and they know I’m ill to a certain extent. They are really great about letting me go to countless doctor appointments without using any sick/vacation time. They’ve also made some accommodations from time to time about my work schedule.

Hi Janis – I don’t think you’re a cynic. I think you're a realist. I completely agree with you about so many of the CFS studies out there, including surveys. (See my response to upnorth).

I googled the test you mentioned, and it looks really interesting! I had a blood test to check for celiac disease not too long ago which came back, but I didn’t realize that I could still be sensitive to gluten. There was a lot of info on that website, so I’ll have to take a look at again when I’ve got a clear head for new information.

Thank you, annie’s mom.

Hi cinderkeys – Good point. I try to be careful not to push myself too much (beyond working with a low-grade fever) because I have been unable to work before (for two years). I am lucky enough that I have been able to work for the past four-plus years at my current job, so they have come to respect my level of professionalism and productivity...I think. :) I have no doubt that my supervisors would work with me if I did need to take a short leave for my health.