Introduction and advice appreciated

Discussion in 'Fibromyalgia Main Forum' started by mookie333, Aug 4, 2008.

  1. mookie333

    mookie333 New Member


    I'm a 44 year old mom of 3 ages 14, 12, and 9. I've had various symptoms since the birth of my last child 9 years ago.

    I've seen about 7 doctors in the past few years and the most of a diagnosis I've gotten is Immune Dysregulaton Syndrome- unknown type- and that was from a top physician at Duke.

    My symptoms are mostly brain fog, muscle aches and pains, vision changes, poor exercise and alcohol tolerance, now am hypothyroid, have vitiligo on my face-not pretty, empty sella-(brain scan finding), and very low white cell count around 2.0 and neutropenic, and elevated eosinophils. My ANA is 1:640, sed rate normal, Natural killer cells are low and large numbers of positive CD* cells-whatever that means. EBV positive.

    Now, not one doctor thinks that I need any kind of treatment. I feel like this will kill me in 5 years if I don't do something about it and cannot find anyone who will treat me appropriately.

    My question is this-could this be Lymes or virally mediated? Does anybody knw of a doctor that's in NW south carolina that can help me. I can travel to charlotte, nc-it is 1.5 hrs from my home, but atlanta is too far 2.5 hrs away....suggestions and hope is needed here. Thanks a bunch for all your help. Mookie
  2. lillieblake

    lillieblake New Member

    Hello, hope someone here can help you.

    I did find I needed to go to my doctors and say "Do something." They then realized I wanted to be treated by them too, not just diagnosed.

    Have you tried that?

    Good luck, Lillie
  3. mookie333

    mookie333 New Member

    of course, but the doctors that i've seen have been traditional and think that my symptoms are not bad enough yet and feel that I need to get worse before I get treatment. M
  4. tgeewiz

    tgeewiz Member that you respond to Guaifenesin.

    It is the only thing that has helped me.

    You can either do a search on here or go to Dr. Amand's website at

    Best wishes and God bless.

  5. stinker56

    stinker56 New Member

    Sorry to hear you are having so much trouble.

    I have never heard of Immune Dysregulation Syndrome. What is this if you don't mind my asking?

    I hope you soon find a doctor who will help you.

    Keep searching and keep faith someone will turn up soon.

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