Munch1958 you recommended I get copies of my WB lyme test

Discussion in 'Lyme Disease Archives' started by EricaCFIDS, Jan 18, 2008.

  1. EricaCFIDS

    EricaCFIDS New Member

    results for my records and to review for myself. Thank you for suggesting I do that. I am having trouble reading it though, even after looking at Dr. Holtorf's website. Could you please help me to understand or anyone else who knows something? I don't understand what the stars mean vs. the + sign or IND? Is a band referring to the specific number listed?

    I had this test done in April of 07, as recommended by my FFC doctor. Dr. Wightman of the Holtorf Med Grp reviewed the results and said I was negative. He was trained and is directed by Dr. Holtorf, who seems to know his stuff on lyme, so I trusted his interpretation. Perhaps the criteria has changed since then? I have since been reading on here how so many people find out they are actually dealing with some aspect of lyme, that I want to be sure. I want to note that I don't have any of the "classic" symptoms of lyme, except maybe the fatigue.

    I've tried really hard to understand how to read this test result, but I'm having trouble. Please help! Thanks! Here are my results:


    B DUNCANI AB - REFERRAL RESULT **
    ANTIBODY NOT DETECTED TO BABESIA DUNCANI <1:640


    IGENEX IGM RESULT NEGATIVE
    CDC/NYS RESULT NEGATIVE

    18 +
    22 -
    **23-25 -
    28 -
    30 +
    **31 IND
    **34 -
    **39 IND
    **41 +
    45 -
    58 -
    66 +
    73 -
    **83-93 IND


    IGENEX - IGG RESULT NEGATIVE
    CDC/NYS - RESULT NEGATIVE

    18 +
    22 -
    **23-25 -
    28 -
    30 -
    **31 -
    **34 -
    **39 IND
    **41 +++
    45 -
    58 -
    66 -
    73 -
    **83-93 -
    [This Message was Edited on 01/18/2008]
    [This Message was Edited on 01/18/2008]
  2. mollystwin

    mollystwin New Member

    Although your test says it is negative there are some LLMD's who would treat you for lyme based on these results. Lyme is a clinical diagnosis and if you show lyme activity on a test and have the symptoms, you most likely have lyme.

    The **bands mean that they are specific to lyme. So if you show activity in these bands, it is significant. The more + you have, the more antibodies were detected. An IND means some were detected but not enough to score a +.

    So for your IGM test you have three IND and one + in lyme specific bands. You IGG shows one IND plus a triple + in lyme specific bands.

    I would suggest you show this to an LLMD to see what they have to say. My FFC doctor said I didn't have lyme either, but they were so wrong!! I am now recovering after a year of abx. Doing much better, but not there yet!!

    Good luck!!
  3. EricaCFIDS

    EricaCFIDS New Member

    Are you both twins?? ( :

    Thank you so much for taking the time to comment. I assumed I was negative because I don't have the typical symptoms. What are those symptoms? Maybe I have enough of them.

    I looked up LLMDs in my area and found an organization called LDA (lyme disease assoc). Their website reads:

    "ILADS Member: ILADS is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases."

    All that came up on their referral list was a neurologist locally, but they list her as a member. Is that who you see? Do you know of an LLMD referral site? Thank you!

    Is there a spectrum of how bad it is, or is it black and white? Is it too late to treat lyme if I do have it? I've had my CFIDS symptoms for so long.

    All the best,
    Erica
  4. victoria

    victoria New Member

    Unfortunately if one has had it a long time, the best one can generally settle for is beating it into submission (aka, remission). Some are able to recover completely, others to varying degrees, some have continuing difficulties. But you'll always have to keep an eye on it.

    Unfortunately too, no one protocol works. Also, keep in mind it is likely you have co-infections that get transmitted along with lyme (babesia, bartonella, ehrlichiosis, & others); tests for these are even more unreliable than the WB for Lyme. And of course you can have other types of 'stealth' pathogens, bacterial and/or viral.

    Everybody's right in saying that at this point, it is really a 'clinical diagnosis', as lyme can hide out in your cells or in cysts and rarely is in the bloodstream. Even the CDC says that in their guidelines. (By the way, was your WB done thru IGenex? they have the highest reliability rating, 70%)

    I'd hope that if a neurologist came up on the LDA's list, s/he'd be lyme-literate (LLMD), so that doctor might be a good start. Is this thesite where you went: lymediseaseassociation.org/referral/ ?

    You can also go to http://flash.lymenet.org where they have a section for referrals, privately, from others in your area. That's where/how I found my son's LLMD.

    hope this helps...
    Victoria



    [This Message was Edited on 01/18/2008]
  5. mollystwin

    mollystwin New Member

    Molly (twinofdar) is my twin sister! That's why my name is mollystwin and hers is twinofdar. It confuses everyone at first.

    If the dr is listed on the lyme website, then I would think they were lyme literate. You could call thier office to see if they could look at your results and possibly treat you.

    You ask what the symptoms are. Any FM or CFS symptom is also a lyme symptom. I thought I had CFS, but really it's lyme!! Based on your screen name, I would say that you have CFS symptoms too which could be from lyme.

    It's never too late to treat for lyme. I've had symptoms for years. Victoria is right in that everyone is different and responds to treatment differently. And many recovery completely and some only partially.

    My doctor and the famous lyme doctor Burrascano think that the ones who recover are the ones who take treatment seriously and take thier meds, rest and have proper diet. No sugar or alcohol. etc.

    Most lymies also have other infections to deal with as well. I have candida and also had heavy metals. I chelated my metals and that has helped me with my immunity. Some have nasty tick co infections which can complicate recovery as well.

    I wish you the best in figuring this out.

    dar
  6. munch1958

    munch1958 Member

    Most of the time the sickest ones test negative because their body is not capable of fighting off the disease.

    Your results are very similiar to mine in the sense that I'm only making IgM antibodies. There is almost no activity other than band 41 on your IgG. Your results are the same.

    What this normally means in a bacterial infection is a false positive. But there are no false positives with Lyme. Spirochetes are a whole different class of bacteria.

    This means a fresh crop of spirochetes are being duplicated each month but your body can't fight them by making antibodies. Do you have a week where symptoms are just dreadful?

    I don't understand why all doctors being trained by Holtorf don't get this concept. I was told I was negative by FFC too but have nearly recovered.

    According to the revised WB criteria on Dr Holtorf's website you have some bands which indicate Lyme regardless of the overall outcome of the WB.

    Band 30 is positive and so is 41. I'm not understanding why the revised WB criteria wasn't applied to your results. I'd hate to think it was all about money with FFC/Holtorf. Would they have reevaluated the Lyme issue after I spent a ton of money on IVs?
  7. EricaCFIDS

    EricaCFIDS New Member

    I've googled all over the place and it's like they are hidden. Any suggestions? Thanks!
    Erica
  8. victoria

    victoria New Member

    did you try both of the places I mentioned?