Discussion in 'Fibromyalgia Main Forum' started by Bambi, Oct 25, 2006.

  1. Bambi

    Bambi New Member

    None of the doctors I've seen nor my current PCP or pain specialists will order the tests for me. None of them believe in that being a core cause for FM and simply will not even DISCUSS getting me tested.

    What kind of doctor did you get your testing from and what did you have to say to get them to order the tests? I know my insurance won't pay for it either but if I had to do one at a time I'd like to KNOW.

    Any suggestions will be appreciated! Bambi
  2. Slayadragon

    Slayadragon New Member

    The newest theory that I've heard is that CFS (the "classic" kind as seen at Incline Village....I don't know about fibro) is caused not by one or two viruses, but by the total viral load carried by the body.

    Some of these may be the identified viruses (e.g. HHV6 or Epstein-Barr), but some may be other viruses.....including those that have yet to be isolated and named by researchers.

    I recently got a quite new test done that measured four things:

    1) Rnase-L Activity. (This is an immune system component). Mine was 1/4 the normal value.

    2) Natural Killer Cell Activity. (Note that this is different than Natural Killer Cell _count_.) Again, mine was 1/4 the normal value.

    3) Oxidative Cell Death. Mine was twice the normal value.

    4) Total Viral Load. Mine was 40x the normal load.

    This suggested to my doctor and me that something is innately wrong with my immune system, and that as a result viruses of all kinds have "taken over." (The idea that the problem with my immune system is innate is supported by a genetic test that I had done a couple of years ago.)

    As you can imagine, if the viral load in the body is high, resulting in cell death, energy levels would be low. This is compounded by the fact that the immune system components that I do have are undoubtedly working extra hard, thus sapping me of energy.

    My doctor's strategy is to try anti-viral drugs (such as the ones used by AIDS or herpes patients) to try to get the viral load in general down. (Anti-viral drugs kill off a variety of viruses, not just the ones that they're advertised as killing.) If this happens, hopefully my overall physical condition and energy level will go up.

    Many doctors are wary of new tests, but this one seems fairly convincing. (I'm going to show it to a couple of my other doctors soon and see what they say.) If your doctor sees a sample copy, perhaps s/he will be willing to give it a try. (It only costs $400 or so, which is not that much compared to many lab tests.) I'm sure that the lab would be more than happy to send the doctor a copy and information about the test.

    This test is currently done by only two labs in the U.S. Mine was done by Immunosciences Lab in Beverly Hills, California. Their phone number is 310-657-1077. You may want to check out their Web site too.
  3. Mikie

    Mikie Moderator

    Who is willing to try an antiviral, like Famvir, empirically. Quite a few docs who treat our illnesses are doing this with good results.

    In my case, we found out by accident that I evidently had a stealth chronic viral infection. I was given Famvir as a preventive prior to facial surgery near my eyes. I went into a complete, but temporary, remission. That was the clue my doc and I needed for him to put me on the Famvir. I took it for a year or so and then decided to pulse it. Eventually, I decided to use the transfer factors sold here and they worked even better. You don't need an Rx for the TF's but I would discuss it with the doc first.

    Love, Mikie
  4. Bambi

    Bambi New Member

    and I got a sign that said it is "unknown". I'll try it again in some other searches.

    I don't know why but I just don't have much fatigue very often. In fact I can get by with less sleep than most people I know. But that includes a nap most days.

    The other symptoms and accompanying illnesses are sure there though. The meds I take keep the pain pretty well under control..the general pain, but now that I've also developed Arthritis and Osteoporosis..THAT pain is not helped as much. It seems to be where I have swelling; fingers, toes etc.. I can't take much aspirin and no Ibuprofen products because they had me on them for so long they really did a job on my stomach. So that pain doesn't get addressed beyond self help things as much.

    I had a bad? SED rate in the bloodwork I had done time before last but got the double strand test Cromwell sp? (sorry!) suggested and t came out fine. Very frustrating to try and get the other tests or meds to just "see" if they help. He does have me take the Doxy off and on but that's from asking and he said he never heard of it for FM. Yep, VERY frustrating! Thanks all! Bambi
  5. Bambi

    Bambi New Member