Negative tests don't always mean No Lyme

Discussion in 'Lyme Disease Archives' started by farradaymcg, Jul 25, 2009.

  1. farradaymcg

    farradaymcg New Member

    After 21 years of CFS, many of them bedridden, I finally found a lab guy who knows his stuff. He said that long term sufferers may test negative to Lyme because it is so deeply embedded in the tissues. Even though I tested negative on all the Western blots, I finally tested positive on a PCR DNA that he ran.Now I am being tested for all kinds of things. BTW I tested negative for all the mycoplamsas, a surprise.
  2. Nanie46

    Nanie46 Moderator

    Hi,

    You are absolutely right. Lyme is a clinical diagnosis based on history and symptoms. It is never ruled out by just a negative lab test.

    Unfortunately, many Dr's do this, leaving patient's undiagnosed for many years or perhaps forever.

    Instead they give patients diagnoses like CFS, FMS, MS etc that have "no known cause".
    Then they never receive the proper treatment.

    I hope you have a good Lyme literate MD who follows the ILADS guidelines.

    Many of us have other tick borne diseases too, like babesia, bartonella and ehrlichia....see this paper....

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

    If not, you can find one on the Seeking a Doctor board at lymenet.org.

    They also have a wonderful, busy Medical Questions board.

    All the best to you.
  3. farradaymcg

    farradaymcg New Member

    Thanks for the lead. I will check it out. I was diagnosed with CFIDS and Fibromyalgia many years ago after 7 days of intense physical and psychological testing at UCIrvine medical school. Lyme tests were negative. I was a Jay Goldstein patient. After he retired I was at a loss. Then I got septacemia and was hospitalized for 6 weeks on intensive IV antibiotics. Guess what. I walked out of the hospital and began walking a mile after being bedridden for years. That's when we knew that antibiotics would work! But that was in 2003. For the past year I have been going downhill rather fast and am back in bed again. So now they are running PCR DNA tests for all the bugs and then will decide on what antibiotics to use this time. The newer testing equipment is more sensitive and picks up things that were missed. I am so glad I found all of you. I have been reading all the posts and learning so much. Thanks!