Opportunistic Infections

Discussion in 'Fibromyalgia Main Forum' started by SkeptikSharon, Oct 1, 2008.

  1. SkeptikSharon

    SkeptikSharon New Member

    It seems there are a lot of people diagnosed with FM or CFS who end up with this "infectious soup" (loved that term! don't remember who used that, but I read it on here) for blood and body. Is there any way we can start a list of what ALL of these opportunistic infections might be?

    I am just starting out on my journey to identify which opportunistic infections may have invaded my poor body, and I have started with viral testing, although I plan to test for all that I can. So far, I have popped as positive for the following, at least as "recent or past infections":

    Coxsackie B1
    Epstein Barr
    Herpes Simplex I & II
    Varicella Zoster

    I am still working on identifying on what else I should be tested for. I know some of the others I still need to be tested for include:

    Lyme (not sure of all the bacterias associated with that one)
    Chlamydia Pneumonia

    I think there are others, but through my fibrofog, I can't remember them.

    This thread is not meant to be a debate about Lyme one way or the other, so please do not even start that here. I am interested in compiling a list of things to test for that others can use on their journey as well.

    Also, as far as immune deficiency goes, does anyone know what tests can be done to identify whether there is a immune deficiency that is allowing these opportunistic infections to invade? I would like to have my immune system looked at, since I know I do have some viral issues, but am unsure as to what can be done to see if it is working correctly. I think most doctors just look at your WBC, but that doesn't tell you if something is hiding in your body or if your body is just not reacting to it, does it?

    I'll add another post probably tomorrow with the other viruses I plan to be tested for. Just can't think right now. Migraine. Yuck. =)

    The whole chicken and the egg theory is very interesting to me, as I wonder whether the Mononucleosis (EBV) I had when I was 16 left me open to everything else, or whether it was reactivated by something at a later time. I have a feeling that my FM stems from something like that, but I know I DO HAVE fibromyalgia. I just wonder what the underlying cause of it is for me, since as of yet, doctors cannot definitively tell us that X, Y, or Z causes FM. All they can tell us is that we have it, and they do not yet know why, as there are different subsets of people that seem to have it triggered by multiple things.
  2. Mikie

    Mikie Moderator

    That once our infections go stealth and chronic in our bodies, the normal lab tests will likely not detect them. This is because pathogens are very, very clever and can fool the immune system and operate below the immune system's radar. When that happens, the immune system is no longer making antibodies in large quantities. Often, it takes PCR DNA tests to detect stealth pathogens and even then, there is a high degree of false neg. results. The tests may have to be repeated.

    Also, one can use AV's and/or ABX to beat the pathogens into a latent state only to have the infections reactivate when one gets sick or run down. Herpes Family Viruses never go away; they just go into a latent state. Mycoplasmas and Lyme can deposit cysts deep inside the body's tissue and these cysts can reactivate.

    I am just finishing up a round of Doxycycline following food poisoning for which I had to take Flagyl and Bactrim. I am having my second Herxheimer reaction in about 10 days. The Doxy is either killing off mycoplasmas or some bacterium from the food poisoning which the other two meds missed.

    Best of luck to you.

    Love, Mikie
  3. Mikie

    Mikie Moderator

  4. ladybugmandy

    ladybugmandy Member

    i had extensive immune testing by dr. leo galland in NYC. i will find the tests when i get a chance and list them here.

    keep in mind that herpes viruses, when chronic, suppress the immune system!

  5. SkeptikSharon

    SkeptikSharon New Member

    Thank you Sue and Jam. I appreciate the info. Do you guys know if most of these lab tests are going to be out of pocket, or if the specific labs normally accept insurance? Also, what type of doctor would you recommend seeing about all this? I know I’m positive for EBV and a couple other things per the testing I’ve had done so far. My pain doc suggests follow-up with an Infectious Disease doc, but would an immunologist be better, since the immune system is likely suppressed? Or can an LLMD maybe handle the same stuff? I can't really afford to go to one of the specialists that are outside my network at this point, although might be able to if/when I get approved for SSDI...