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

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

Monday, January 7, 2013

Article: What PWME's Want Well People to Know

Thanks to Sue Jackson and her excellent blog for bringing this article to our attention.  I'm going to repost it here because it's a great summary of the frustrations that we face in dealing with some well people.  My only criticism of the article is that it paints with too broad of a brush and doesn't do enough to acknowledge that there are many well people who do get it.  


6 comments:

  1. Patrick-Happy belated new year! A few blogs ago you mentioned something about the holistic medical view compared to the traditional.....and that you were turning more towards traditional after your sleep specialist appointment. I have veered away from my holisitic doctor lately in lieu of seeing this immunologist now. The immuno doctor has been questioning some of the work the holistic doctor has been doing, which of course only adds to the confusion about getting the proper treatment for this. How are you moving foward give that scenario, seeing both types of practitioners? Hard enough the way it is, but to have one questioning the other makes the future a bit murky.

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    1. Hi Bret. Happy New Year to you too!

      I think what I was trying to describe in the blog entry that you're referring to is that, whereas I previously had reservations about supplementing with hormone replacement therapy (like thyroid and testosterone), the sleep specialist sort of convinced me that that was the way to go given my blood test results. Since he told me all of the exact same things as Dr. W, it was easier to accept (particularly since the sleep specialist doesn't have a financial interest in whether I take them or not). I'm not sure if any of my doctors is considered holistic, per se, but then again, I'm don't have the best grasp of what that term even means, lol.

      How have you been doing since your move to more traditional medicine? Any improvement? Maybe it's too early to tell...?

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    2. I actually have my cortocosteroid IV tomorrow morning, the first of 3 (1 x per month). This was prescribed by my immunologist, who I found initially through a person in a support group I am in. My holistic doctor is familiar with CFS/ME, which is how I eventually found him after the usual trial of doctors that discount this ailment as anything real. I guess I seem to have plateaud with the holistic doc, little more he can really do but try to maintain me on the current supplement regimen (which I do think have helped a bit over the past year). It seems like my immunologist is thinking outside the box a bit, which I really like as long as the treatment don't pose other threats. So, hopefully the cortocosteroids will reset my immune system to produce normal amounts of anti bodies. Whether that improves me at all is yet to be seen. Thanks again for asking.

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    3. That's really interesting Bret. I have never heard of this treatment before you mentioned it. I'm really interested to know how it works out for you. Best of luck.

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    4. Patrick-Just thought I would report in. Well, I am on day 5 of feeling the best since my onset 2 years ago. It is unreal to feel "normal" again, no brian fog, energy, and just a pep about me. About an hour after my infusion, I started to think clearly....had a quickness in my thinking, and an energized feeling. Only bummer is that I slept about an hour last Friday evening (which I was told would happen) due to this energized feeling. But by last Sunday, I just felt normal again. A bit bittersweet, because it most likely is transient. But man, to feel like my old self is worth more than i can describe. Hard not to get the hopes up though. More to come I guess......

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    5. Bret, that is fantastic. If this works...and it sounds like it is... I wonder why it's not talked about more often. I need to look into this - it sounds promising.

      Even if it is transient, as you say, there's not a lot I wouldn't give to feel normal again for a couple of days. I bet you're loving every second of it.

      Here's hoping you keep going in the right direction. Best of luck.

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