Immunologist or endocrinologist?

Discussion in 'Fibromyalgia Main Forum' started by Malcolm82, Sep 7, 2008.

  1. Malcolm82

    Malcolm82 New Member

    On an earlier post I described that I was getting impatient with my doctor because I had been on her CFIDS treatment protocol for about 7 months and haven't had marked improvement, and that I got more skeptical when she said 95% of her CFIDS patients recovered in 3 months to 3 years. I realize I'm probably too impatient about the results at this point, but her claimed success rate probably bothered me more than anything because, from what I have read, it is way higher than the CFIDS doctors who have been on the forefront of research, like Dr. Cheney, etc.

    I saw one of my former customers last week who said he had suffered from CFIDS 20 years ago for 3 years. He eventually saw an immunologist who tested him for Lyme disease, which he tested positive for. I think he said he was treated with Prednisone and eventually the CFIDS symptoms went away completely. He suggested I see an immunologist also. He also remarked that his onset was sudden. Mine was extremely gradual, I think over 4 years before it got so bad I couldn't work. I don't know if that is significant.

    My brother suggested I see an endocrinologist because alot of the CFIDS symptoms are supposedly caused by hormonal imbalances.

    Now I'm confused. Should I see one or the other, or both, or neither? Will it really do me any good, or just more money down the drain?

    Just looking for some guidance from those that have been where I am now. (Check my profile for details)

  2. 3gs

    3gs New Member

    Most every post I have seen here says rhemys are a place to start.

    Also lyme disease docs.

    Ive had this all my life and got so sidetracked and misdiagnosed that Im just starting over. I would say immunologist.

    Good luck
  3. Malcolm82

    Malcolm82 New Member

  4. Malcolm82

    Malcolm82 New Member

    It seems like everybody is just as confused as we are.
  5. LuvQuilting

    LuvQuilting New Member

    Funny enough I've been doing a lot of research lately on this to present to my neurologist next week. Come to find out, autoimmune diseases can cause neurological pain (I have peripheral neuropathy originally diagnosed with FM). Also, some autoimmune diseases are treated with steroids. Wonder if that's why your customer got better.

    I tested positive for Lyme according to the IGenex criteria but my infectious disease doctor says no. I don't have the supporting symptoms.

    It's one big giant puzzle, isn't it? And frustrating. I'd see the Immunologist.
  6. providerwatcher

    providerwatcher New Member

    What I think you'll find on this board, more than perhaps confusion or contradiction, is that there simply isn't a straight answer for you. Why? Because Lymes, CFS, Fibro, are complex by themselves. To compound things, the symptoms of one may be found in another. Plus, some, like Lymes, has as much opinion associated with from the medical community, than it has facts.

    I think your answer isn't necessarily what you want to hear, but its that you start with a doctor who can diagnose you properly. Get that done first and foremost. Tell people on this board the area in which you live and get some recommendations from us. One of the things you quickly find reading here is that misdiagnosis wastes more money and anguish than anything, because if you are misdiagnosed, you're treatment obviously isn't going to work.

    Once you have a diagnosis in which you are reasonably confident, start a treatment regime. Try not to bounce here and there after only short periods of time. Follow a program for a while, and then after a few months, if you are not noticing a meaningful difference, go to a different one. Be it a rumy, or immino, or "fibro specialist".

    Others will have different opinions on this, I think, which is fine because there is more than one "right answer" to addressing your question. But, that's my advice from my experience.
  7. wendysj

    wendysj New Member

    This is all very frustrating... I'm sorry you have to start the process.

    I have type 1 Diabetes and have an endocrinologist. They definitely know the hormonal system better than anyone. They will be able to tell you if you have a thyroid problem as well. If so, that could be what is making you tired. Diabetes iteself can make you tired as well. They can at least rule some diseases out for you. I have seen every type of doctor there is (not literally but it feels like it). Unfortunately, you will have to have lots of test done to rule out lots of other things.

    Good Luck!
  8. providerwatcher

    providerwatcher New Member

    Grammy, good point. Here is a company that has doctors in the Northern Atlanta area, Cleveland, and North Dallas, who are anti aging specialists but who also treat Fibro. Worth a look if you are in their cities, but also worth it to check out others in your city. This is especially true if you are already receiving hormone replacement.