Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, July 25, 2012

Methylation cycle testing, and some "bright-side" musings

Pretty soon, I'll be off to Hoag Hospital to get blood drawn to send to Health Diagnostics laboratory in New Jersey.  They'll run a methylation panel, which essentially tells you how well your body is eliminating waste from the blood stream, among other things.  It is thought that defects in the methylation cycle are a key part of the problem for people with ME/CFS. Apparently Health Diagnostics is the only lab in the country that runs this particular panel.  It will be an interesting experience: This is the first time I'll have ever shipped my blood across the country.  I never thought I'd be doing that.

But in the mean time, I was thinking of two more things that I can look to as the "bright side" of my illness.  Granted, they don't compare to having my health, but I try to focus on the positive.

1.  My electric bill has been about half of what it was in previous summers.  That's because, with my lower body temperature, we don't need to run the air conditioning.  We simply keep the windows open.  My wife was never as sensitive to the heat as me, so she doesn't mind keeping the A/C off.

While I originally got sick in the middle of last summer, I was still in the acute stage of the illness, so my body temperature hadn't dropped yet.  This summer we're starting to see the savings, which has already been in the hundreds of dollars, and could be in the thousands by year's end.


2.  I have a lot of favorite items of clothing lying around and in storage which, over the last five years, I've outgrown -- especially as I packed on weight around my torso.  But I held onto these clothes anyway, perhaps because of their sentimental value or because they "just don't make 'em like that any more."  


Now that I've lost 30 pounds because of the CFS, I'm suddenly able to fit in all these clothes again.  I love it.  


I actually think my ideal weight is somewhere between my current weight and what I weighed just before I got sick.  I wouldn't mind gaining about 15 pounds back.  But for now, I'm just happy to give these old comfortable clothes a second go-around.  

7 comments:

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  2. I've read a number of places that people with CFS usually put on weight, and have trouble losing it ("From Fatigued to Fantastic" by Dr Teitelbaum comes to mind).

    Until just recently, I've always been the opposite. Even though I wanted to put on a few pounds, I just couldn't gain the weight. Interesting that this is not so uncommon.

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    1. I've read that too, Greyson. But then again, I've also talked to a lot of people on the message boards who have trouble keeping the weight on. I think it depends on if you have gut issue, and if so, what type. And also whether you changed your diet in response to getting ME. In my case, I'm also supplementing T3 thyroid hormone, a side effect of which is weight loss.

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  3. I initially lost weight due to severe gut issues and then slowly gained it back once I could eat again. I had plateaued but started taking steroids last year so slowly started gaining again. I've weened off the steroids and changed my diet and added iodine supplements so I'm curious what is going to happen next.

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    1. Interesting, Baffled. Are the steroids to control an autoimmune condition? I was surprised to read that because they suppress the immune system as you know, so I would have thought that steroids would be bad for someone with ME/CFS, but I know that everyone has different etiology and co-conditions.

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    2. What turned me onto the steroids is that I had to have a cortisone shot in my shoulder for an unrelated condition (leftovers from a car accident). During the month that the cortisone was coursing through my system I had a significant remission of my CFS symptoms leading me to believe that this is very much an inflammatory process at work. Wild guess here but if it is primarily inflammation of the brain that would be the source for all the other weirdness that happens in this illness. Fix the brain and you fix everything else. But I'm guessing.

      Anyway, once the cortisone wore off my symptoms came back and i returned to baseline. When I mentioned this to my CFS doc he said that small doses of hydrocortisone can help some CFS patients. So I started on 5mg and worked up to 15mg per day. It did help a lot.

      However, now that I've made huge diet changes which seem to be reducing my inflammation naturally I wanted to see if I could go off the hudrocortisone. I think I'm slightly worse for not taking it but I've replaced it with tumeric and ginger which are natural anti-inflammatories. Docs really don't like you taking this stuff for long periods of time since the body builds up a tolerance to them and stops making it own cortisol. After being on them for over a year I thought it was time to wean off them for a while.

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    3. OK, thanks for that explanation Baffled. I understand now.

      I hope your new diet successfully reduces inflammation for your. Let me know how that turns out.

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