Very confused about this illnessMycoplasma ment'd

Discussion in 'Fibromyalgia Main Forum' started by krissy888, Dec 5, 2006.

  1. krissy888

    krissy888 New Member

    Hi,

    I have fibromyalgia. I have had this for about 4-5 years.
    My symptoms include sore back and neck, fatigue, and sore muscles.I slowly got this after having on-going chronic stress.

    I was just tested for the mycoplasma panel and it came back all negative. I was surprised. Is it possible that the test didn't pick up the infection.? It was done at MDL lab by PCR test.

    I also have been tested for EBV and CMV. What else could I be tested for? My TH1 and TH2 are balanced but my immune system is out of balance. My killer cells are very low but their killing power is very high so I never get sick. I haven't been sick in about 3 years.

    What do you all think? Thanks Krissy
  2. gypsy101

    gypsy101 New Member

    I too, tested negative for everything they thought to test me for. But I found a site called roadback.org and started reading there. There is a lot on fibro. I went to their message board and lurked around. I went to (I need a minute to count how many docs I've seen...) four doctors in the past month. I found one who would give me minocycline. The others acted like I was asking for hard core narcotics and chastized me soundly for even suggesting minocycline for fibro. Recently, I've become very tough, though, so I stood up for myself. I wanted to give this a try. I am happy HAPPY to report I am pain free. I am not only pain free, but brain fog free. I feel amazing. (my skin looks pretty good too as mino is used for pimply faced teens!)I would suggest to anyone who wants to try this out, to TRY IT. Please. There is nothing to lose, I wont' get rich if you try it. I am not selling anything. I'm an average person.
  3. krissy888

    krissy888 New Member

    Thanks for the info.

    That is the only problem, finding a doctor that will give you a antobiotic even though nothing is showing up in the blood tests.I have no idea who I can go to that will precribe me a antibiotic. I would like to try one to see what happens because I know something is wrong.

    Did you have fibro symptoms?????
    [This Message was Edited on 12/06/2006]
  4. foggygirl

    foggygirl New Member

    I've read somewhere that the U.S. tests do not show adequitly if mycoplasma is present and the test needs to be sent to New Zealand (I think that's where it was)--does anyone know if this is the case? If so, where/how do you send it?

    Foggygirl

  5. Mikie

    Mikie Moderator

    Dr. Garth Nicolson's website, Immed, and print out his info on stealth mycoplasma infections. Sixty to seventy of us with these illnesses test pos. for mycoplasma infections. False neg. test results are very common.

    The easiest way to treat is empirically. My doc and I did this because we knew it was a mycoplasma infection which triggered my illnesses full blown. I Herxed and felt better and stayed on the Doxycycline for 2 1/2 yrs., pulsing at the end. The mycos are under control, but I keep the Doxy on hand because they can reactivate when one gets run down.

    Good luck.

    Love, Mikie
  6. krissy888

    krissy888 New Member

    Hi,
    Did you test positive for mycoplasma in your blood test? All of mine were negative.
    My doctor will not give me anything such as doxy unless he can find something and he also said that most doctors will not either especially these days when they are being warned not to overuse them due to increasing numbers of bacteria that are becoming resistant.

    Can you get Doxy online without a prescription (sounds scary) or are natural antibiotics just as good?

    Thanks, Krissy
  7. jarjar

    jarjar New Member

    Take the Igenex Western Blot test for lyme as it is the most respected. About all the cfs/fm patients that come into my lyme doc and other lyme docs for that matter test positive with the most respected Igenex. As cfs and fm have identical symptoms to lyme.
    50% of lyme patients don't even remember being bitten by a tick.

    J
  8. connieaag

    connieaag New Member

    We too were referred to this web site, and my daughter started Minocycline in May 2005. It really has helped her pain, although she still has flares and painful knees, it has really helped her joints.
  9. TeaBisqit

    TeaBisqit Member

    I was lucky, I showed my doctor a copy of that study that was done with Xithromax and she gave it to me right away. It has taken into the ninth week on it to see it start to work. I'm in the tenth week now. I am better on it. Never stop trying to seek out a doctor to give you long term antibiotics for this illness. Maybe alot of us wouldn't have been ill for so long if we had been given long enough courses of antibiotics.
  10. gypsy101

    gypsy101 New Member

    Can you tell me the link to the zith study? Thanks.
  11. Mikie

    Mikie Moderator

    Which triggered my illnesses full blown in 1990. It was active at the time and showed up on a blood test. I printed out Dr. Nicolson's material and gave it to my doc.

    Doxycycline does not outright kill the bacteria. It changes the cells' surface so that the bacteria cannot enter them and they starve to death in the bloodstream. It is considered safe for long-term use. It is certainly safer than having a chronic bacterial infection like mycoplasma or Lyme.

    Can you find a doc more knowledgeable in our illnesses? Unless a doc is willing to learn, he or she cannot be of much help. A doc must be willing to either do the tests or try ABX and/or AV's empirically. Obviously testing is better but false neg. results are common.

    Good luck.

    Love, Mikie