question about diagnosis

Discussion in 'Fibromyalgia Main Forum' started by joe_, Mar 1, 2003.

  1. joe_

    joe_ New Member

    hi all,

    i am a 26 year old male who got sick 9 months ago. the sickness is without any doubt related to a sexual exposure i had with a woman i do not know well. After my initial waves of symptoms hit me, i started an odysee of STD testing, because i was sure i had acquired an STD like HIV or Hepatitis or both.

    However I had negative HIV1/2 Elisa┬┤s up to 9 months, PCR RNA, PCR DNA, ultrasensitive p24, 2 Viral Cultures with retroviral assay (PERT) etc etc. All in all 25 hiv tests or so.
    I also put lots of efforts in Hepatitis A,B,C testing, again with lots of different tests (PCR, antibody, antigen)

    i also tested for other STDs, the really amazing thing is that all came back negative. my doctors tell me since 6 months that i do not have any STDs, hiv or hepatitis. I could never believe it, since i have so many health troubles: fatigue (i was out of work for 3 months!) , tender lymph nodes (!!), white tongue (but no trush), etc.

    of course i will keep testing for hiv/hep, but i want to start exploring other possibilies. And when i read through the list of symptoms frequently observed in CFS patients, i thought maybe i should explore this path as well, since the list of symptoms reminded me so much on my symptoms.

    This is the reason why i want to ask you, if somebody had similar experiences. I mean, are you able to relate your onset of symptoms to a specific event? I also want to ask if somebody ever had elevated liver transaminases (say, ALT around 100 or so), like i have. My docs say it can not be viral hepatitis, they reckon it's my antidressants, my gain of weight, etc. etc.

    Currently i fell well for 4-5 days, and then, at weekend i have to stay in bad for 2 days to have enough power to go to work on monday again (in my old days, i used to work even on the weekend, i never had to relaxe). And even when i am "fine", i only have 70% of my old level of energy.

    All in all, i am pretty lost. I am grateful that i seem to be hiv negative (knock on wood, i am still skeptical) but i would really like to know what is going on...

    all inputs are highly appreciated

    thank you!

  2. Mikie

    Mikie Moderator

    Is the person with whom you had this contact sick? Just curious if you have any info about her current state of health. It may well be that you have CFS and it had nothing to do with this relationship, but we do know that some of the infections which trigger our illnesses can be passed in the active stage.

    I know the exact date of the onset of my triggering event, Dec. 24, 1990. It was a mycoplasma infection. This is a stealth bacterial infection which was active enough that it showed up in a blood test. Now, it would take a PCR DNA test as it has gone stealth. I am completing my antibiotic therapy and am hopeful that the last of the mycoplasmas will soon be gone. Mycoplasmas are rampant in people with Gulf War Illness, RA, CFS, FMS and in some other illnesses like Lupus and MS.

    It sounds as though they have done quite a bit of testing. You may have a stealth infection which is keeping you sick. I continue to believe we are genetically predisposed to our illnesses and any event which stresses the immune system can trigger our illnesses.

    Love, Mikie
  3. Lendi

    Lendi New Member

    It may have been such a traumatic experience for you that CFS was then triggered off. I had bronchitus in Jan 02 followed by the death of a very dear niece in April 02. I started having,"noticible" symptoms in May. So, I really think the predisposition was there, but the physical and emotional stressers triggered it off. Hope you find out, do not have and STD, and feel better. Lendi
  4. joe_

    joe_ New Member

    well, she admitted that she is chronically fatigued, but she plays it down and says "i am just easily getting tired, but it's just normal for me",etc.

    unfortunately, she refuses to discuss this issue with me (we have no contact anymore), i wonder why... maybe because a) she feels guilty or b) she really thinks i am a paranoid hypochondriac.


  5. joe_

    joe_ New Member

    indeed it was the most stressful time in my life and i did not sleep for weeks last summer.

    since i have lots of allergies etc, i may indeed have some genetic preposition which left a hole in my immune system and in conjunction with stress... well, could be...

    i hope this is the explanation and not a "stealth hiv" infection or something. thank god my ID doc told me this idea is "absurd" and the viral cultures should have catched it if the standard tests missed it.

    o well... this is the difference between most of you here an me: i know that everything is my fault, and this doesnt make it any prettier

  6. joe_

    joe_ New Member

    i will discuss this (autoimmune hepatitis) with my doctor,
    thanks for the info!

  7. sb439

    sb439 New Member

    I think Mikie meant a mycoplasma or other stealth infection, not HIV.
    Also, if what you have belongs in the CFIDS family, you'll have to get used to doctors who don't specialize in CFIDS (CFS) telling you that this or that is absurd. The syndrome is too complicated and research too much in its beginnings.
    Your 'trigger' event may have been a trigger event of stress, and the stress may have 'activated' whatever it is that makes you feel exhausted, and that has been present in your body beforehand.
    Typical tests for CFIDS candidates will include Lupus, HHV6 reactivation, lymphocyte count (you'll have had that one, I guess), tests for adrenal insufficiency, for disturbances of the balance, and the list goes on.
    One piece of advice everybody will agree on is this: if you think you've got CFIDS, avoid stress at all costs.
    all the best,
  8. allycat20

    allycat20 New Member

    I remember the days of working all week and even on weekend. I even went out on weekends with little sleep! My symtoms started I would wake up with a pain in my neck thinking I had slept on it wrong and from the point things when downhill!!!!! Believe me and all the others stress is the worst possibly thing! I still stress but trying my best not too. Being a single parent and trying to work makes it hard, but I am trying with all that is in me so hope things get better.
    [This Message was Edited on 03/04/2003]