Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Apr 9, 2009.

  1. bigmama2

    bigmama2 New Member

    hi. i was reading the other post about your CFIDS and that you have been diagnosed with "chronic immune disfunction" or was that "chronic immume deficiency" ?? now i cant remember which?! anyways i wanted to ask you if you'd share some of the blood tests youve had to get this diagnosis and the results. i am always curious to learn about what our blood tests say about our illness. and also to learn more about the subset theory- which i think is definately true. i myself have CFIDS long time but i am getting better.

    [This Message was Edited on 04/09/2009]
  2. TeaBisqit

    TeaBisqit Member

    There were so many, I wouldn't even know where to begin. I know alot of it had to do with the natural killer cells. Some of it was viral reactivation. Other tests were for autoimmune disease. I used to have a list of the tests, but I don't know what happened to it. I think I had handwritten them for a newer doctor. It's basically lots of immune function tests. Things we're low in. I can't even look up my test results because I'm still trying to track down my medical records. They might not be lost. I tracked down the head doc of the clinic and his secretary said they either have my records at their office or they are in an archiving place here in town. So I'm waiting on that now. From what i remember, the tests were what Cheney and Petersen were using, so you'd want to look up whatever they have been doing all these years.
  3. bigmama2

    bigmama2 New Member

    ok thanks. hope you can track down your tests and medical records. and keep them at home in a folder or something.

    you are on disability right? what did you get it for? cfids or something else.? i am considering applying and i assume i will need to show copies of all my medical records. hope the judge likes to read, cuz its a book!

    tryiing to manage this illness and its symptoms and all the extra crap that goes with it is like a job!

    i feel for you, in your situation, i really do.

  4. TeaBisqit

    TeaBisqit Member

    The official diagnosis from both my doc and the social security doctors was CFIDS Chronic Fatigue Immune Dysfunction. I was never given the name Chronic Fatigue Syndrome. I've been on SS since 91.

    The best thing you can do is bring in test results, but they want to hear that you can't do anything. Basically, you have to tell them you have one foot in the grave :D They don't want to know anything else. You cannot tell them you can sit or stand or do anything for more than a minute. If you dare to tell them you can sit up for five minutes, they will say you can do a desk job. Anything they ask you, just say you can't do it.