Have CFIDS-Tested negative for Lyme

Discussion in 'Fibromyalgia Main Forum' started by Malcolm82, Mar 26, 2009.

  1. Malcolm82

    Malcolm82 New Member

    Hello, I just wanted to report that I asked my doctor to test for Lyme disease on my last blood work, and the results came back negative. The test method used was EIA. Does anybody know if this method is fairly definitive, or is there another test that might detect detect Lyme where this one didn't? I have had CFIDS for certain for at least 3 years and have been disabled by it for 1.5 years.
  2. 3gs

    3gs New Member

    hopefully nanie46 will see this. most everyone has said to do the Westernblot test thru Ignex. i hope im getting this right.

    nanie46 got me going on this. first test doc said was neg. but i posted my labs and symptoms and its postive for lyme. so many docs are not knowledgeale in this area. I still cant find a lyme doc.

    if you can go to lyme board or surf thru old posts here. i swear they know more than docs do.

    hope you are neg
  3. kellyjk4

    kellyjk4 New Member

    I tested positive with the Igenex blood test, even though test through another lab were negative. Your doctor can collect the sample and put in a mailer to the lab with the paperwork. It cost $200 when I had it done (four years ago) but they are the most accurate when it comes to lyme testing. My insurance company did not cover any of it, but yours might. Good luck to you, and I hope you find some relief soon. -Kelly
  4. shell

    shell New Member

    Same as above did the Igenex not sure if ins. will cover it. I also had a positive result. Curious as to the number of us coming up positive. Not sure what my treatment is yet.
  5. Nanie46

    Nanie46 Moderator


    The others are correct, you should have a western blot from Igenex lab in CA....www.igenex.com

    You can call them for a free test kit with a prepaid fedex mailer. the kit comes with the doctor's order form and info for the lab, or you can print a dr's order form from their site.

    It is likely that your Dr will not understand the need for this test or he would not have run and been satisfied with the first one. Take my word for it. You must insist that he order it. Tell him you are paying for it and it is your choice.

    He needs to order test #188 and #189 lyme western blot IgG and IgM...total cost $200. Must be prepaid with credit card or check...I think they might accept medicare for older folks.

    They will send you a receipt that you can send into your insurance co.

    One of the best lyme experts, Dr Joseph Burrascano states that "The suggestion that two tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness.".............yet that is what almost all Dr's do.

    There is no test that is 100% accurate, but Ignenex is by far the very best. They are the only lab that tests for all bands, which is absolutely necessary and they include many species of borrelia bacteria in their testing methods.....there are 100 species in the US alone.

    Lyme is a clinical diagnosis.....means it is based on history and symptoms and supported by labwork....it is NEVER ruled out based just on a lab test!

    I also am sending you some info to read in these links...there is alot of great info here and great symptom lists......




    Remember that CFIDS is a syndrome(set of symptoms) with "no known cause" and everything has a cause.

    You can also leave posts for me on the lyme board.

    Good luck!!!!!

  6. munch1958

    munch1958 Member

    The Elisa test for Lyme is 85% inaccurate. Please see the documents about the Dearborn conference under the failure of testing section:


    At the Dearborn conference in 1994, the IDSA changed the criteria to test positive to such a high number that the only people who test positive are those who have a large swollen joint. In order to test positive with the Elisa test, you must have LATE stage Lyme in order to test positive for EARLY Lyme.

    You can also refer to this excellent book by PJ Langhoff:

    "The Baker's Dozen: Has Junk Science Shifted the Lyme Disease Paradigm?"

    The Quest & Labcorp Western blot test does not include bands 31 & 34. These two bands were taken out of the testing at the Dearborn conference. They wanted to be able to separate people who were vaccinated for Lyme from those that were not.

    The Igenex Western blot has bands 31 and 34 plus they use 3 strains of Borrelia for comparison purposes. The Igenex test is supposed to be 78% accurate. In some reports, the Quest WB is only 30% accurate.

    The CDC "suggests" a 2-tiered testing approach to Lyme. One test is supposed to cover specificity and the other sensitivity. In reality, this approach misses a huge number of cases of Lyme. This is the reason why it's an epidemic. Plus many doctors don't know how to intrepret the Western Blot test. All bands on the test are not created equal. Some are Lyme specific and others are not.

    Band 31 or OspA (outer surface protein A) is specific enough for Lyme to make a vaccine from it. But now the Infectious Disease Society of America (IDSA) says it's not specific enough for testing. Makes no sense to me. Nothing about Lyme disease makes any sense to me.

    I thought I had CFS and FM since 1981. I have now recovered my health. I no longer have
    TMJ, migraines, daily headaches, GI disturbances, IBS, gastritis, ulcers, asthma, costochondritis, muscle pain (FM) or fatigue (CFS.) Those problems are all gone now.

    IMHO, reading literature about CFS and FM is pretty much a dead end. We are all supposed to "learn to live with the symptoms" or "accept our conditions" or worse they tell us "It's all in our heads." So how did we know to make up all of the same symptoms? It HAS to be coming from a bacterial/viral source. Tha'ts why we all have the same symptoms!!!!

    Everyone is so busy trying to legitimize these syndromes. No one ever mentions the possiblity that Lyme Borrelia could be a factor or trigger. It may not be a factor for EVERYONE with CFS/FM but it should be ruled out. This website maintains that 80% of those with CFS/FM test positive for Lyme -- I would agree with that number.