Which IGeneX tests?

Discussion in 'Lyme Disease Archives' started by krock, Sep 15, 2009.

  1. krock

    krock Member

    I believe I have undiagnosed Lyme. A previous test was positive for 2 bands, but my doctor insists that is a negative test. I am at my wits end trying to find a doctor. I am thinking about trying to find someone to order Igenex testing. Which of their tests should I get? There are a lot and they are expensive, so I need to prioritize and get whatever will be most valuable in making a diagnosis.
  2. Nanie46

    Nanie46 Moderator

    Hi,

    You should order test #188 and #189, the Western blot IgG and IgM.

    Don't worry... many, many people with lyme never have an officially positive test result... including me....but I have lyme specific bands.

    It is extremely important for you to know that Lyme is a clinical diagnosis...based on history and symptoms.

    Lyme should NEVER be ruled out by just a negative test, although 99% of Dr's do this mistakenly all the time.

    You can find a Lyme Literate MD (LLMD) at lymenet.org.......click on flash discussion....sign up for free.....click on the Seeking a Doctor board.....create a post asking for a LLMD in your state.

    You will receive at least one message with names.

    Non-lyme literate Dr's do not have a clue about how to recognize, diagnose or treat chronic lyme and associated coinfections.

    Many people with lyme also have other tick borne infections like bartonella, babesia, ehrlichia and others.

    I urge you to also go to lymenet.org's Medical Questions Board. Post your own questions and read other's posts.

    There are alot of very intelligent, helpful people there and you will learn alot. They will help you.

    I am Dekrator48 on lymenet.org.

    If you can get a Dr to order the Igenex testing, make sure you are not taking antibiotics or any immune supressing drugs.

    You can call Igenex and order the free test kit. It comes with a prepaid 2 day fedex mailer, and the Dr order form and lab instructions.

    Have blood drawn on a Mon or Tues morning at a lab that Fed-ex's labs out daily. You want your blood to arrive at Igenex via 2 day fed-ex before the weekend.

    If you don't hear from your Dr about results within 10-14 days, call Igenex and have them fax results to your Dr.

    Get a copy of your results right away, even if your Dr tells you that your results are negative....he won't have a clue about how to interpret the bands.

    Post your results here and on lymenet.org's Medical Questions board.

    And remember....if your test is negative.....it DOES NOT rule out lyme...even though a non-LLMD will tell you it does.

    There are many reasons why we have negative tests. It is only an antibody test and sometimes we have stopped producing the antibodies.....plus testing methods are poor and incomplete at most labs....etc.

    Test results are only one small piece of the puzzle....not nearly as important as your history and symptoms.

    Make sure you start by reading this paper by a Lyme expert....

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

    The western blot info is on page 7 of the above paper.

    Another site with important western blot info...

    http://www.drcharlescrist.com/testing.htm


    I'd be glad to help you in any way I can.....good luck.
    [This Message was Edited on 09/15/2009]
    [This Message was Edited on 09/15/2009]
  3. krock

    krock Member

    CD57 = 48
    Igenex IgG = band 41 +++, band 39 +, band 34 IND, all other bands -
    Igenex IgM = band 41 +, all other bands -

    Please anyone share your interpretation of these and where I should go from here.

    Thanks!
  4. Nanie46

    Nanie46 Moderator

    Hi,

    Glad you got some Igenex results.

    Bands 34 and 39 are lyme specific bands, meaning that only exposure to the bacteria Borrelia burgdorferi, would cause you to produce those antibodies.

    My LLMD told me that he considers an IND result to be like a light fingerprint....it may not be "dark" but it is still the same fingerprint.

    A low CD 57 is also a clue to chronic lyme..and yours is low.


    Please read carefully these 2 western blot explanations below....

    Read the western blot explanation near the bottom of page 7 of this very important paper by a lyme expert....


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



    Then read Dr C's western blot explanation below....


    http://www.drcharlescrist.com/testing.htm



    You should find a Lyme literate MD and get a good evaluation. He will look at your history, symptoms and labs.

    You can find a LLMD by either going to lymenet.org....clicking on flash discussion....sign up for free.....go to the Seeking a Doctor Board and create a post asking for a LLMD in your state.

    Or you can try contacting a Lyme disease support group in your city/state...or you can try contacting the Lyme Disease Association.

    Lymenet.org also has a good Medical Questions board with alot of helpful people and the board is very active.

    Keep us updated, and I wish you all the best!
    [This Message was Edited on 01/23/2010]
  5. greatgran

    greatgran Member

    Krock, I am not sure what is going on with me .. I did order the Igenex Kit but can't find a doctor to even consider I might have lyme . I had the Elsa test which came back negative .
    So that is as far as the doc is willing to go. He thinks I am a nut..

    I feel like pulling my hair out. Feel so darn bad and can't find a reason and no doc to even help .. Heck I am paying for it .

    Would you please share your symptoms with me. Mine are mostly body aches, fatigue but the worst is the ear/sinus thing, that never goes away, also the anxiety/depression. Some days are worse that others but the off balance, vertigo and the misery . I want some answers.

    Oh, I was dx with " I think" CFS but not sure so many unanswered questions..

    Good Luck,
    gg