New diagnosis

Discussion in 'Fibromyalgia Main Forum' started by emallen, May 15, 2003.

  1. emallen

    emallen New Member

    I just got back from Dr. and he said i had cfs but only that i had it, that i need to take antioxidant vitamins and something (real nasty stuff) to build up my immune system and that " I should be fine."
    What does that mean? From everything I have read, the chances are I won't be fine. I looked at my bloodwork all it shows is positive for ebv (he said past infection) and cd8 positive lymphs and high ebv titer. '
    I am really scared based on what I have read on this board and wonder if I should be seeing an endocrinologist, rheumatologist, internest etc?

    I just can't get any sicker. I have two children and a full time job. I have tingling in extremities, arthritis type popping and sometimes pain that jumps around, fatigue (but not terrible.. more related to trouble sleeping..thought it due to perimenapause), some muscle weakness and general malaise. Got sick with flu something at Xmas and never really got better. But not really getting worse either. Do you have any tips on how to proceed from here. Right now just anxious and depressed about the prognosis and the flip attitude of my dr.

    Could it be that he was just telling me I am worn out and need rest?
  2. Takesha

    Takesha New Member

    I am not that experienced with all of this, so I'm not going to give any advise. I to empathize with what your going through though and it is scary when you don't know what to expect (I have FMS). I am going to "bump" this post up so others more experience can read it. This board moves so fast, and sometimes posts get pushed to the next page before anyone can answer. I didn't want you to think know one was listening. I hope you get to feeling better soon.

    Takesha
  3. achy

    achy New Member

    Since you also have pain, I'd find a good rhumatologist that deals wiht FM/CF. You can call your local arthritis foundation office and they can give you refferals. Also, it there is a local support group they are the best source for info.

    Maybe the doc is thinking since you were diagnosed early these treatments will help. Hey, my highdoho doc doesn't believe in vitamins! Ansd since many of us are convinced this IS an autoimmune thingy they may help..heck, they can't hurt.

    I wish you luck..and welcome to the fmily!!
    Warm fuzzies
    Achy
  4. Princessraye

    Princessraye New Member

    What is the Nasty Stuff you are taking?
    I've never been offered anything to help me.

    I have had this for 16 years, still waiting to improve and sorry to tell you I am only getting worse. Wish I had better news for you.
  5. emallen

    emallen New Member

    Thanks for the response. Princessray: I am taking Biochoice Immune 26 (I think). It is made by injecting hens with human illnesses (like strep), and then conceivably the hens produce antibodies and then lay eggs full of these antibodies. He said that the shells are ground up and that eating this will help my immune system. He is not a salesman type so I tried it. Actually it did help. I have been on it for three weeks and I went from about 50
    o 80 apacity but then no better ..seems to have plateaued. But he did tell me to give it three months.

    I went to a new doctor today with my bloodwork and he is sending me to the Mayo Clinic. Mentioned adrenal fatigue, possible subacute infection and perhaps low cortisol levels. I am kind of relieved. He said I could mess around several months in this small town trying to get to the bottom of what this problem is or try the Mayo clinic and get tested for everything. He said he is confident that they will check thoroughly. He suspects endocrine problem. I am relieved that someone is taking proactive approach. And helping to find out what is wrong. I have been so spoiled with good health for so long that the last few months have been hell and part of it is WONDERING what the heck is wrong. And getting so anxious that I may spiral downward.

    Thanks for listening. I believe this board has really helped me.
  6. emallen

    emallen New Member

    Thanks for the response. Princessray: I am taking Biochoice Immune 26 (I think). It is made by injecting hens with human illnesses (like strep), and then conceivably the hens produce antibodies and then lay eggs full of these antibodies. He said that the shells are ground up and that eating this will help my immune system. He is not a salesman type so I tried it. Actually it did help. I have been on it for three weeks and I went from about 50
    o 80 capacity but then no better ..seems to have plateaued. But he did tell me to give it three months.

    I went to a new doctor today with my bloodwork and he is sending me to the Mayo Clinic. Mentioned adrenal fatigue, possible subacute infection and perhaps low cortisol levels. I am kind of relieved. He said I could mess around several months in this small town trying to get to the bottom of what this problem is or try the Mayo clinic and get tested for everything. He said he is confident that they will check thoroughly. He suspects endocrine problem. I am relieved that someone is taking proactive approach. And helping to find out what is wrong. I have been so spoiled with good health for so long that the last few months have been hell and part of it is WONDERING what the heck is wrong. And getting so anxious that I may spiral downward.

    Thanks for listening. I believe this board has really helped me.
  7. loopyloo

    loopyloo New Member

    Hi Emallen
    I think it would be good for you to go to the mayo clinic if they are going to do lots of tests so people wait months for 1 test then months for another test so its good you can have the lot done at once welcome to the board and keep us all informed i have ME/cfs ME is what they call it in the UK and i also think as i have been diagnosed with Rumatism that i have fm as i have a lot of pain every day as well as fatigue
    ((((((big hugs))))))))) from the UK
    Loopyloo xx
  8. Princessraye

    Princessraye New Member

    Thanks for the info.

    You are lucky to find a Dr. who is sending you to Mayo. Please let us know what they say.
    I am praying for you!