Numerous tests, but do I have a lyme answer? All opinions grateful! :)

Discussion in 'Lyme Disease Archives' started by thecatswhiskers, Jun 3, 2009.

  1. thecatswhiskers

    thecatswhiskers New Member


    Hi,

    Just a bit of background which might help guage my lyme risk. I've been ill with 'M.E' for almost 22 years, from the age of 17, for the last 15 pretty seriously, especially with immune system symptoms (constant infections/ viruses and allergies etc).
    Upto being ill I worked as a veterinary nurse and also was type of child/ person who was outside alot, playing in woods, fields, going for walks 9in them too etc, and also had a bit of a 'penchant' for nursing sick wild animals back to health (birds, squirrels, hedgehogs etc), and if there was any animal neer me, I'd be there!!! Also some of these areas I used to walk/ picnic etc in are deer forests. We also have muntjac deer in woods over the road and as a child I was always playing in those woods and fields. Stayed on farms etc too.
    I also rode horses when I was younger.
    Previously tested positive for EBV (not HHPV6, CMV, or Chlamydia).


    Telling you all this as thUs far I've had 4 different tests for lyme, and it seems for me there seems a less than convincing answer to whether I am positive or negative to it, so wonder what people on here's opinion would be. I have a LLMD here in England, but I also want to form my own opiion before they give me theirs (I think theirs will be 'yes' tho).


    My test results are as follows;

    Test 1. LTT-MELISA (Laborzentrum Bremen)

    Negative .....
    ... but the lab suggested a retest by a different method as my immune system was acting so oddly (a high background inflammatory response), the result couldn't be relied on.


    Test 2. IGENEX WESTERN BLOT

    IgM: Negative (CDC + Igenex)

    The following bands were marked though;

    39 kDa +
    41 kDa IND
    83-93 kDa IND

    IGG: Negative (CDC + Igenex)
    The following band was marked though;

    41 kDa IND


    LYME IgG/ IgM SEROLOGY: 0.26 (negative if < 1.0)

    BABESIA MICROTI ANTIBODY: IgG (<1:40) Negative IgM (<1:20) Negative

    HUMAN EHRICHIA MONOCYTIC (HME PANEL):
    IgM 1:20 (may suggest disease progression and/ or treatment)
    IgG < 1:40 Negative

    HUMAN EHRICHIA GRANULOCYTIC (HGE PANEL): IgM <1:20 Negative IgG <1:40 Negative

    BARTONELLA HENSELAE ANTIBODY: IgM <1:20 Negative IgG <1:40 Negative



    TEST 3. NEUROIMMUNOLOGY 'PANEL C'


    LYME-SPECIFIC ANTIBODIES: Negative for all

    BORRELIA SUBSPECIES ANTIBODIES:

    Borrelia b. sensu stricto IgG - Equivocal
    Borellia Garinii IgG - Equivocal

    LYME COINFECTIONS ANTIBODIES:

    Bartonella IgM - Abnormal
    Ehrichia IgG - Equivocal

    LYME CROSS-REACTIVE ANTIBODIES: All Normal

    NEUROLOGIC ANTIBODIES: All Abnormal (BADLY ABNORMAL, sky high!)




    TEST 4. CD57 Result - 37 Indicitive of Chronic Lyme




    Sorry it's so long, but that was sticking to the bare bones of the results info!!!!!!!

    Anybody have an opinion as to whether I probably do have lyme etc or not????? Any thoughts GREATLY appreciated! I don't want to put my body (or bank balance!) through costly treatments needlessly, but there again I'm desperate to get better and feel I do have a chronic infection that needs addressing, whatever that is.

    Kind regards, and thanks in advance :eek:)
  2. Nanie46

    Nanie46 Moderator

    Hi,

    From looking at your labs, it looks like you have chronic lyme and ehrlichia and maybe bartonella too.

    On your Igenex western blot, bands 39 and 83-93 are species specific to lyme...only someone exposed to it would produce those antibodies. My LLMD says that an IND reading is still a positive because it is like a fingerprint....just not a dark fingerprint.

    See the western blot info on page 7 of this lyme expert's paper....


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

    There is alot of other great info in that paper and info on coinfections also.

    i urge you to go to lymenet.org....click on flash discussion...sign up for free like you did here....click on the Seeking a Doctor board and post a new topic looking for a LLMD in England.

    Also go to their medical questions board and post your question there. You will get many intelligent responses from people with lots of experience.

    Lyme is a clinical diagnosis, based on history and symptoms and can be supported by labwork.

    It looks to me like you could use a good LLMD.
  3. thecatswhiskers

    thecatswhiskers New Member

    Thank you very much for your opinion, I appreciate it so much. It was very interesting your summary of my Western Blot too, and the fact you think I do have Chronic Lyme gives me more impetus (and resolve) to start treatment for it, as I feel that my LLMD will give me that same opinion too.

    I'm going to look up all the info you've given me and also post now on Lymenet.org too.

    Really appreciate your input, so thanks once again.

    Take care and kind regards,
  4. KimDC

    KimDC New Member

    Hi. I've been sick for 8 years, 2 weeks following a trip to a cabin in the woods in upstate N.Y (we removed several ticks from each other). 2 weeks later I had a fever and textbook Lyme symptoms, but no rash and negative Lyme antibodies. In the next 6 years, I had Lyme antibodies done 2 more times, both negative. Finally, convinced that I had SOMETHING from a tick, I paid for the full Lyme panel from Igenex. I didn't test for co-infections because of cost. I had only one positive result with Igenex: Western Blot, IGG, band 41 ++. Band 41, IGM, was IND.

    I've just had my first appt. with a LLMD last week. $500, but worth it. He said, without a doubt, that the cause of my illness is the tick bites 8 years ago. He's treating me for Babeosis first because I have drenching night sweats and migraines. I'm taking Mepron, 750 mg, twice daily and Zithromax, 500 mg, twice daily, for 3 weeks. Moderate herxing so far (day 5). Next, I'll do IV Rocephin for 6 weeks (scared about that).

    My LLMD explained that he's been treating people like me with vague test results for 25 years with a 75% cure rate. He doesn't rely on test results, but on history and symptoms (the "clinical picture"). He said not only are the Lyme tests horribly unreliable, but that there are tick-borne bacterium and parasites that have yet to be identified. At University of North Florida, a professor discovered 2 new strains of Lyme in Florida lizards just 2 weeks ago. 60 - 65% of all the lizards he tested had these 2 strains of Lyme. So did a few human blood samples that he tested. What all this means for people like you and me is that we have to decide, based on our own symptoms and history, if a tick-borne infection is likely. For me, it makes perfect sense. I don't need to know the exact name of the "bug" that's slowly killing me and I'm willing to try any treatments for Lyme and co-infections that exist.

    I hope this helps you in some way. Good luck!

    Kim