HELP ,lyme test Doc said wont tell anything???

Discussion in 'Fibromyalgia Main Forum' started by carebelle, Jun 16, 2006.

  1. carebelle

    carebelle New Member

    I am back just for today and off again to see the new Grandson.
    I am soooooooo tired .I am not looking forward to an airplane trip with two lay overs.I forgot how hard it is to travel with this illness.I am on the plane alone my husband has to catch a different flight.

    I am excited to be able to see my grandchildren its just so hard to physically do all this.

    To top everything off I was bit by a spider on the end of my nose .It killed all the skin and now there is a piece of carlege sticking out of the skin.And a big hole.


    I did go back to my doctor yesterday and he finely did a lupus test and a lime test so next week when I get back I'll get the results.

    My doctor said that the lime test only shows up if it has happen recently.I thought some of you had it show after years had pass .Can someone tell me more about that ????
    [This Message was Edited on 06/16/2006]
  2. victoria

    victoria New Member

    but first -

    YIKES -are you having that spider bite treated? Sounds like it could've been a brown recluse? You left me hanging there for a few minutes with the immediacy of it!!!!

    Most reliable "accepted" Lyme test is the Western Blot done by iGenex, but no test is very reliable. Some do show positive after years of infection but most do not show positive initially, hence the need for the doctor to treat based on the 'clinical' picture.

    The reason is that Lyme borrelia is pleomorphic - it will start changing its shape very soon after hitting the blood stream, can happen quite fast actually. It can go inside cells - even white blood cells - and tissue cells. It can also go into cystic form - forms a 'shield' around it - to hide from body. The longer one has it, the more likely it isn't even in the blood but elsewhere wreaking havoc.

    Many, if not most people, don't even know when they were infected as a result of its ability to 'hide'. One can be asymptomatic for a long time until something else causes it to trigger.

    Dr. Burrascano, one of the LLMDs treating pts longest, says often a chronic Lyme pt will not show positive until after months of treatment.

    Making things more difficult, there are over 100 variations of Lyme Borrelia in N. American alone, and over 300 worldwide, so different abx work for different strains. And of course there is no test to determine what strain you might have even if you do get a positive Western Blot.

    Add to this picture the likelihood that one has a co-infection also transmitted by the tick - more the rule than exception -

    plus the fact that tests for the few co-infections they can test for are even more unreliable - can start to give you the picture of how difficult it is to treat chronically ill long-term patients.

    Check out the lyme board here (click on 'message boards' up above); also check out ilads.org and their links.

    hope this helps,
    Victoria


    [This Message was Edited on 06/16/2006]
  3. hopeful4

    hopeful4 New Member

    carebelle,
    I've taken a couple of excerpts from this important lyme disease document. Maybe it will provide you with some helpful info.

    I have chronic lyme which went undiagnosed for many, many years. In my case, I had a Quest test (I think it was western blot). It came up negative. Many months later, and a different doctor, and I was tested through Igenex with the Western Blot, and bingo, positive. I had also been on ABX for about a week, which can sometimes kick up the lyme.


    ADVANCED TOPICS IN
    LYME DISEASE
    DIAGNOSTIC HINTS AND TREATMENT
    GUIDELINES FOR LYME AND OTHER
    TICK BORNE ILLNESSES
    Fifteenth Edition
    Copyright September, 2005
    JOSEPH J. BURRASCANO JR., M.D.

    ******
    Not surprisingly the seronegative patient will convert to seropositive 36% of the time after antibiotic
    treatment has begun and a recovery is underway. Similarly, the antibody titer may rise, and the number of
    bands on the western blot may increase as treatment progresses and the patient recovers. Only years after a
    successfully treated infection will the serologic response begin to diminish.

    ******

    I must very strongly emphasize that all diagnoses of tick-borne infections remains a clinical one.

    ******

    LYME BORRELIOSIS
    DIAGNOSTIC HINTS

    Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is
    definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible
    for the patient's symptoms.

    The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints.

    Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and
    defining the extent of damage that might require separate evaluation and treatment.

    Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in
    a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important
    factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic fourweek
    cycle of waxing and waning of symptoms, and improvement with therapy.

    ******

    DIAGNOSING LATER DISEASE
    When reactive, serologies indicate exposure only and do not directly indicate whether the spirochete is now
    currently present. Because Bb serologies often give inconsistent results, test at well-known reference
    laboratories.

    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. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots.

    I therefore recommend against using the ELISA. Order IgM and IgG western blots but be aware that in late disease there may be repeatedly peaking IgM's and therefore a reactive IgM may not differentiate early from late disease, but it does suggest an active infection. When late cases of LB are seronegative, 36% will transiently become seropositive at the completion of successful therapy. In chronic Lyme Borreliosis, the CD-57 count is both useful and important (see below).

    Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can
    cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD,
    83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You
    should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific
    and nondiagnostic.

  4. carebelle

    carebelle New Member

    I think it was that spider cause I've never seen anything like this .I looked like WC Fields for about 10 days .

    I thought it was acne ,then a boil and finely my husband said he thought it was the spider bite because I have lost the skin off my nose on the tip .It is cut all the way thu to push out the carlege .Really weird.

    There is really carlege sticking out .When I showed my doc yesterday all he said was yes looks like the poison from a spider and it will leave a scar .It should be another 4 weeks before its healed.

    My husband said he should have put me on antibiotics so he's getting me a prescription filled today .I guess we will try to push the carlege back in and use a sterry strip instead of stitches. I may have to go get plastic surgery later if it doesn't heal right.

    The Doctor was like Oh Well.But he just left the cut open.I heard these kind of spiders were really bad.Now I know they are.
  5. Gail8899

    Gail8899 New Member

    is full of balogna. I had Lyme for 6 years. (still do have it and am dying from it) Was tested via Western Blot from two different labs and two different drs. Both tests were highly positive as was an Elisa.

    It's unfortunate, but you can still have Lyme and test negative on the blood tests. In my personal experience the ones who test negative are much sicker because thier bodies don't put up any kind of defense against the Lyme at all. (did urine tests and cultured the bacteria at some special lab in CA so that is how they finally found out that they really did have it)

    One more thing...despite what the CDC and most drs would have you to believe the chances of a false positive on a Western blot are pretty rare, but false negatives are very common.

    I can still remember when Aides first came out and they said it was so hard to contract that it would be impossible for it to become an epidemic too!

  6. winsomme

    winsomme New Member

    you really need to go to an LLMD (Lyme Literate Medical Doctor).

    i order to find one near you go to:

    www.lymenet.org

    click on their "Flash Discussion" page and then look for "seeking a doctor" and "medical questions".

    between those two message boards you will find everything you need to know about Lyme.

    in order to post questions, you will have to sign up just like you did for the board.

    let me know if i can be of any more assistance.

    thanks
    bill
  7. carebelle

    carebelle New Member

    thanks everyone for the information