Try To Sleep But Zap Keeps Me Awake? What The Heck Is This?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by joeb7th, Dec 23, 2006.

  1. Nanie46

    Nanie46 Moderator

    Hi Megandoc,

    You're very welcome. I don't mean to sound pessimistic, but do not expect your regular Dr to know much about Lyme disease, lyme testing and other tick-borne infections. He may agree to do an ELISA (Lyme screen), which is considered useless by Lyme experts (LLMD's).

    The mainstream medical community uses 2 tier antibody testing for lyme. If the ELISA is negative , and it usually is, they don't even bother doing a western blot. Even if they did do a western blot, it would be from a typical lab like LabCorp or Quest, which does not test for all bands on a western blot. They leave out many Lyme specific bands which are tested for at Igenex lab.

    If you read page 7 of the following paper, under the heading "Diagnosing Later Disease", you will see that Dr Burrascano, a LLMD, says that the ELISA is not sensitive enough to serve as an adequate screen.

    The ELISA misses at least 50% of cases of Lyme disease. Even the standard western blot misses many cases of Lyme disease because of the strict criteria set up by the CDC to qualify as a positive test. Then on top of that, they created this test in a way that cannot detect other strains of Borrelia....only one strain.

    My western blot from a standard lab was CDC negative, with only one positive 41 on IgG.

    My western blot from Igenex was read as CDC negative (because the criteria are too strict and limiting and the CDC does not consider many lyme specific bands!), but it showed positives on bands 30, 41, 45 and 56 and an indeterninate on band 31..all on the IgG (meaning past infection).

    Then my Igenex western blot also showed positives on bands 18, 58 and 83-93, and indeterminate on bands 39 and 41 ...all on the IgM (recent or active infection).

    If you look at the link above, on page 7 under the heading "western blots", you will see that Dr Burrascano says which bands Dr B considers Lyme specific. I had many Lyme specific bands show up on my Igenex western blot, that are not tested for through regular labs.

    If I had listened to the 3 Dr's who told me I did not have Lyme, I would never have recovered to where I am today. I had to do this research myself and advocate for myself and find a Lyme literate MD.

    It is unlikely that your Dr will know any of this and will believe that the 2 tier testing for lyme is adequate.

    Then when you get a negative result from the ELISA or standard western blot, he will tell you that you don't have Lyme disease.

    This is why I strongly urge you to find a LLMD or LLND and get a good evaluation.

    There are thousands and thousands of chronically ill people out there with these chronic infections that are not being diagnosed and treated properly. They will never recover because they are being given diagnoses with "no known cause" and therefore the root cause cannot be treated.

    You could tell your Dr that you want a western blot done through Igenex lab in CA and a Lyme culture test through Advanced Labs. You will have to pay for them (Igenex only accepts Medicare) but it is worth the money to get answers.

    You can call or email customer service at Igenex and have them send you a free test kit which has a prepaid fedex label included. The Igenex western blot should be done on a Monday or Tuesday morning at a lab that can prepare the blood and send it out SAME DAY via 2 day fedex. It should not be done later in the week, or it could arrive at Igenex on Fri or Sat and sit for too long.

    Lyme Disease is actually a clinical diagnosis, based on history, symptoms, exam and labs. It should NEVER be ruled out based on just a negative lab test, although this happens all the time, leaving people sick forever.

    Just ask all the people on the Medical Questions board at will hear the same story of seeing dozens of Dr's, getting negative tests and zillions of other diagnoses until they found someone Lyme literate who understood tick-borne infections.

    More good info:

    Please watch this very informative documentary about the unrecognized epidemic of Lyme Disease, called "Under Our Skin":