Igenex results - promised to post them

Discussion in 'Fibromyalgia Main Forum' started by maps1, Mar 31, 2009.

  1. maps1

    maps1 Member

    As promised here are my results they came back March 23 and docs office called to say negative. Had doc appointment yesterday and even the doc said she did not really understand the results but thought it was negative.

    I would like to thank all the people that kept posting about lyme which niggled at me until finally I got tested. I have posted this on the lyme board as I really am not sure of what the results are telling me although enough information has been posted here to make me aware that band positives mean something.

    IFA, B BURGDORFERI G/M/A 140 titer

    I assume this is lyme and so this result is negative



    **23-25 kda positive
    **39 kda indeterminate
    **41 kda positive
    **83-93 kda indeterminate


    ** 41 kda indeterminate


  2. Nanie46

    Nanie46 Moderator

    Hi maps,

    Well, you finally have confirmation that the root of your symptoms is lyme, a bacterial infection!!!

    You know that a ILADS trained Lyme literate MD would read this as a positive result, even if some of the results say negative. Obviously your IgM is postive, so you have lyme.

    Even when some people's "overall interpretation" is negative,they can still have lyme since those are only reporting criteria, not diagnostic criteria....and we know that is only one of the problems with testing. Mine said negative, but I had several positive species specific bands, so it indicated lyme.

    Some people always tested negative because their immune system is so dysfunctional that they they were no longer producing the antibodies.

    Here is why your test is indicative for lyme:

    Bands 23-25, 39 and 83-93 are species specific bands(there are others also). Only a person who was exposed to Borrelia burgdorferi bacteria would make antibodies to the proteins on those bands.

    A LLMD would see the "indeterminate" as a weak positive. My LLMD told me that an indeterminate (IND) is like a fingerprint. It doesn't matter how dark the result is, it's still the same fingerprint.

    I'm sure I'll be talking to you on the lyme board. I also recommend lymenet.org...their boards are great....you can find a LLMD there, post medical questions..their board is very active and you will get many quick and intelligent respionses from people with lots of experience.

    Congratulations to you for finding a CAUSE of your illness that you can treat. Not that anyone wants to have lyme...but it's better than living with an illness where all they tell you is the cause is "unknown".
  3. maps1

    maps1 Member

    I have been sitting here shaking and stomach in a not, i needed someone to confirm what I was reading.

    Now I am in sobbing, I just can't believe it is real, thank you thank you thank you. I know I have a long way to go but just thinking that this nightmare is over is so unbelievable.

    No idea what I should do next.


  4. Nanie46

    Nanie46 Moderator

    Hi maps,

    I know it is such a relief to finally have an answer....I did the same thing.

    We can all pay it forward here....

    It was another person's post here saying all her symptoms were gone, that made me decide to start researching Borrelia burgdorferi infection (lyme) in Oct 2008.

    I eduated myself through the ILADS guidelines, Dr Burrascano's 2008 guidelines and other good resources.

    I found a Dr to order an Igenex western blot and then had to interpret the results myself according to the info on page 7 of Dr B's guidelines. Since the overall interpretation said negative, that is all my regular Dr's looked at. Those are only reporting criteria, not diagnostic criteria.

    My band results indicated lyme, however. I only knew that because of research. I found a good LLMD through lymenet.org and started treatment.

    It will be a long road. It can take many months, sometimes years to recover. It will require combination long term antibiotic treatment, plus many supplements.

    Much of the cost is paid out of pocket because the insurance co's and the IDSA refused to acknowledge that chronic lyme exists and requires long term treatment!

    There are many success stories though, so do not despair. Lymenet.org is an invaluable place.

    I posted for you on the lyme board here about what to do next.

    I also have posts over there about my first and second LLMD appts, and others that may be helpful.

    Treatment is long, but it sure beats spending your remaining years with a diagnosis that has "no known cause"!

    Looking forward to talking further with you and walking the walk to recovery together!

    [This Message was Edited on 04/01/2009]
    [This Message was Edited on 04/01/2009]
  5. munch1958

    munch1958 Member

    Hi Maps1:

    I think you are a new member of the Die Lyme Die Club. If you've been sick for a long time most likely you are no longer making antibodies to the Lyme bacteria.

    This bacteria swamps the immune system because OspA (outer surface protein A) is a Lipopeptide Pam3Cys. This is the reason why the vaccine for Lyme Borreliosis didn't work. What Lyme ultimately does is reactivate infections of all kinds.

    I wouldn't get too hung up on the test results saying "negative". Most regular doctors have no idea how to intrepret the Western Blot either. Your profile says you live in Canada. You may want to join the Canadian Lyme board to get specific info on how to find a LLMD in your area.


    My results were:
    IGM: ** 30 ++, **34 IND, ** 39 IND ** 41
    IGG: **31 IND, **39 IND, ** 41 ++ 58 ++

    Based on the revised WB criteria for Lyme disease on Dr Kent Holtorf's website, I am positive and you are too. The Fibro and Fatigue Center's protocol is based on the work of Dr Holtorf. He had CF and cured himself using the treatments he developed.



    1. Reflects antibody response to specific Bb antigens
    2. Different sensitivities and specificities of the bands
    3. Some bands are potentially seen in different bacteria- “nonspecific bands”
    4. Some bands are specific to spirochetes
    5. Some bands are specific to Bb
    6. Specific: 18, 23-25, 28, 31, 34, 37, 39, 58, 83 & 93
    7. Spirochetes in general: 41 (flagellum)
    8. First immune response if present is usually 41 and 23 KD bands
    9. Response to the 31 KD proteins is not usually seen for a year after initial infection


    1. IGG WB 5 of the 10 bands (18,23,28,30,39,41,45,58,66)
    2. Criteria based on early Lyme
    3. IGENEX adds 3 specific bands (31,83 and 34) and 3 non-specific bands (22,37,73)


    1. IGM WB 2 of the 3 bands 23, 39, 41
    2. IGENEX adds 3 specific bands (31,34 and 83) and 3 non-specific bands (22,37,73)


    1. IGG WB: 2 specific band criteria has demonstrated improved sensitivity and maintained specificity

    2. Can diagnosis Lyme if any one band (IgG or IgM) of 18, 23, 28, 39 or 58 kDa or if any 2 or more of the following bands are present; 30,45,41 and 93

    3. If negative or require further confirmation, can obtain IGENEX WB (adds specific bands of 31, 34 an 83, which are typically seen in chronic disease)

    4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83

    5. If positive for Borrelia on any test, consider testing for neurotoxins

    6. Consider testing for co-infections

    7. Check for coagulation defect (See Hypercoaguable State in CFS and FM)

    Under point #2 it says Lyme can be diagnosed if any two of these bands are present. I have band 30 & 41 ++.

    Under point #4 it says that Lyme can be diagnosed if any of these one bands are present. I have band 58 ++.

    I spent thousands at the Detroit FFC and was told I did NOT have Lyme. I knew better because I've had 2 EM rashes and a funky hand rash. So I sought out a LLMD. Now I'm almost symptom free -- no more CFS and no more FM! I was treated with B-HRT, heparin, Antifungals and Abx.

    I highly recommend the book "The Baker's Dozen & the Lunatic Fringe: Has Junk Science Science Shifted the Lyme Paradgim?" by PJ Langhoff.

    I would also recommend that you find a doctor to do some hormone testing and check for hypercoagulation. Lyme typically causes hypercoagulation especailly if you've had it for a long time. It also messes up the hormones especially the HPA -- hypothalamus, pituitary & adrenal axis AND the thryoid. Here is info on that: www.drcharlescrist.com

    You may also want to watch the movie "Under Our Skin". I don't know if they'll be showing it outside the USA but you can order it from their website. The movie trailer is on YouTube and the web.

    Good luck!
  6. munch1958

    munch1958 Member