Yeepie Finally, a positive Lyme test for me

Discussion in 'Lyme Disease Archives' started by buttercakes, Jan 2, 2008.

  1. buttercakes

    buttercakes New Member

    Hello to everyone who has read my posts. Thanks to this board for leading me to Igenex labs. I seen my Lyme doc yesterday
    to get my results, He said the western blot was clearly
    positive, along with low thyroid,low B-12, low vit.D, low testosterone,low progesterone and a positive candida test. (no wonder I have fatigue) He put me on Doxy for 3 months to start, cats claw and a bunch of suppliments to boost my immune system up. Does any one know if cats claw is really safe to take with doxy. I've read some negitive things about it. well, at leased I know for sure I have Lyme disease and can begin the healing process. Its nice to know Im not crazy and the symtoms are not in my head. Any input
    here is always helpful. thanks again, sandie
  2. mollystwin

    mollystwin New Member

    So you really do have lyme!!!! And of course a bunch of stuff that goes with.

    My twin sis took cats claw with doxy and herxed quite a bit. I took only doxy and herxed, but to a lesser degree. So you may expect some herxes coming your way.

    Did your doctor prescribe a probiotic?? That's a must if you are on abx especially if you already have candida. Did he presribe any antifungals for the candida?? If so, you can herx from that as well. If he hasn't started you on these you should definatly get some probiotics right away and then ask him about antifungals. If he won't give you nystatin or diflucan there are herbals you can take.

    Good luck to you Sandie!!!

    dar
  3. munch1958

    munch1958 Member

    If it makes you feel any better I have all of that crud in my infectious chicken soup too. High EBV, high candida, high chlamydia pneumonia, Bb, Babesiosis, and possible Bartonella.

    I'm on Abx, heparin, a ton of B-HRT hormones (HGH, estradiol and testosterone pellets, compounded T3, DHEA, hydrocortisone, melatonin, and progesterone). Lyme usually causes deficiencies in 1-7 hormones.

    Also on 5,000 units Vit D3 per day. Were you tested for co-infections? Are you seeing a LLMD? FFC?

    I take Cat's Claw in the core protocol from the Buhner book "Healing Lyme." So far no trouble mixing it with Abx.

    Happy Healing Sandie!
  4. wld285

    wld285 New Member


    I take Cat's Claw in a supplement made up by my doc, plus I already had some of my own that I kept taking. I am on doxy.

    Linda
  5. victoria

    victoria New Member

    amazing how many are turning up positive... Did your WB show all of the 5 bands that the CDC uses for tracking/surveillance? Just curious...

    Victoria

    (it makes me mad that they require all they do for those purposes, I know many who had the initial bulls-eye rash & flu, treated without testing as it's cheaper, and got better -- but never get reported. Quite common in southern states.)

  6. mollystwin

    mollystwin New Member

    Even if we did annoy some folks over there, we are helping some people get better which is what I really hoped for!!

    I know there are others out there too!

    dar
  7. buttercakes

    buttercakes New Member

    YES, HE PUT ME ON NYSTATIN, PROBIOTICS, VIT D, MAG.CITRATE,
    FISH OIL,PREGNENOLONE,NATURE THROID,CATS CLAW,MOLYBDENUM AND HE GAVE ME A B12 & TESTOSTERONE SHOT. IM NOT TO SURE WHAT TO EXPECT FROM HERXING. CAN YOU CLUE ME IN? THANKS AGAIN. SANDIE
  8. buttercakes

    buttercakes New Member

    THANKS FOR THE WELCOME, I WAS TESTED FOR BABESIA WHICH WAS NEGITIVE, THANK GOD. YES, I HAVE A LYME DOC NOW, HE WAS RECOMMENDED FROM THE MICHIGAN LYME DISEASE ASSOCIATON. HOW OFTEN DO YOU TAKE THE CATS CLAW AND HOW MUCH? DOES IT MAKE YOU FEEL SICK? IVE READ SOME NEGITIVE THINGS ABOUT IT. I WAS QUITE SHOCKED TO FIND OUT THAT I HAD LOW THYROID AND LOW HORMONES. OVER THE PAST FEW YEARS I HAD BEEN TESTED FOR THYROID A FEW TIMES AND IT ALWAYS CAME BACK OK. HOPEFULLY
    ILL START FEELING BETTER AND BE ABLE TO HAVE A LIFE AGAIN.
    THANKS AGAIN, SANDIE
  9. buttercakes

    buttercakes New Member

    YES, I NOW HAVE A LYME DOC. HE WAS RECOMMENDED BY THE MICHIGAN LYME DISEASE ASSOCIATION HE'S IN ROMEO, WHICH IS
    ONLY ABOUT 45 MIN DRIVE FOR ME. HE IS OPTIMISTIC ABOUT MY RECOVERY. HE SAID I WAS VERY LUCKY TO HAVE A DIAGNOSIS SO SOON (5 MONTHS) BEING THAT ALOT OF PEOPLE GO FOR YEARS WITHOUT TREATMENT. I GUESS IM ONE OF THE LUCKY ONES.THANKS
    AGAIN FOR ALL YOUR INPUT, IT REALLY HELPS. IM SURE ILL HAVE LOTS OF QUESTIONS ON MY ROAD TO RECOVERY. TAKE CARE, SANDIE
  10. buttercakes

    buttercakes New Member

    ARE YOU TAKING THEM TOGETHER? HOW MUCH AND HOW LONG. I THINK ONE OR THE OTHER IS MAKING ME SICK TO MY STOMACH.
    THANKS, ANY INPUT HELPS. SANDIE
  11. buttercakes

    buttercakes New Member

    THESE ARE THE BANDS THAT SHOWED UP POSITIVE. 23+24+25+31+++
    41+ IGM RESULT POSITIVE & CDC/NYS RESULT POSITIVE. HE SAID THIS TEST SHOWS A RECENT INFECTION. IM CONFUSED ABOUT THE IGG 31+,41+ IGENEX POSITIVE & CDC/NYS RESULT NEGITIVE. I REALLY THOUGHT I HAD AN OLDER INFECTION, AS WELL AS A NEW ONE. ITS ALL STILL CONFUSING TO ME. IM JUST RELEIVED TO HAVE A CLEAR DIAGNOSIS SO I CAN START TX. AND GET ON THE ROAD TO RECOVERY. THANKS FOR YOUR RESPONSE. TAKE CARE, SANDIE
  12. victoria

    victoria New Member

    If you click on Munch's name, she has info on her profile; also there's a post here from me about info that Chootik wrote out.

    Also found this info from a paper on Western Blot:
    http://www.lymenet.de/labtests/brenner.htm#cdc

    I'm putting it here as I don't have the brain power to compare this info to Munch's or Chootiks...

    ---

    The CDC criteria for a positive WB are as follows:

    * For IgM, 2 of the following three bands: OspC (22-25), 39 and 41.
    * For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.

    How were these recommendations arrived at? The IgG criteria were taken pretty much unchanged from a 1993 paper by Dressler, Whalen, Reinhardt and Steere [2].

    In this study, the authors performed immunoblots on several dozen patients with well characterized Lyme disease and a strong antibody response and looked at the resulting blot patterns. By doing some fairly involved statistical analysis, they could determine which bands showed up most often and which best distinguished LD patients from control subjects who did not have LD.

    They found that by requiring 5 of the 10 bands listed, they could make the results the most specific, in their view, without sacrificing too much sensitivity. ("Sensitivity" means the ability of the test to detect patients who have the disease, "specificity" means the ability of the test to exclude those who don't. Usually, an increase in one of these measures means a decrease in the other.)

    The IgM criteria were determined in much the same fashion (by different authors in different papers). Fewer bands are required here because the immune response is less mature at this point. Several studies have shown that

    1. the first band to show up on a Lyme disease patient's IgM blot is usually the one at 41 kDa,
    2. followed by the OspC band and/or the one at 39.

    The OspC and 39 kDa band are highly specific for Bb, while the 41 kDa band isn't. That's why the 41 by itself isn't considered adequate. Here's the rub, though: the CDC doesn't want the IgM criteria being used for any patient that has been sick for more than about six weeks. The thinking here is that by this time an IgG response should have kicked in and the IgM criteria, because they require fewer bands, are not appropriate for patients with later disease.

    A number of criticisms have been offered of the CDC criteria since their adoption in 1994.

    1. The first is centered on the CDC's failure to make any qualitative distinction among the various bands that can show up on a patient's Western blot.

    A number of Lyme disease researchers feel that different bands on a WB have different relative importance -- that "all bands are not created equal."

    For example,
    * many patients with Lyme disease will show reactive bands at, say, 60 and/or 66 kDa. However, these correspond to common proteins in many bacteria, not just Borrelia burgdorferi, and so are of limited diagnostic usefulness, especially in the absence of other, more species-specific bands.

    The band at 41 kDa corresponds to Bb's flagella (the whip like organelles used for locomotion -- Bb has several) is one of the earliest to show up on the Western blots of Lyme disease patients. But for some reason it is also the most commonly appearing band in control subjects.

    This may be due to the fact that many people are exposed to spirochetes at some time in their lives and so their sera might cross react with this protein.

    * On the other hand, certain other bands are considered highly specific for Bb -- the aforementioned
    o 31 kDa band, for example, or
    o 34 (OspB) or
    o 39 or OspC (anywhere between 22 and 25).
    Also thought to be species-specific are
    o The 83 and
    o 94 kDa bands.

    Many Lyme disease scientists believe that any patient whose IgG Western blot exhibits bands at, say, any 3 (or even 2) of these locations almost certainly has Lyme disease, regardless of whether or not any other bands are present.

    They feel that these bands on a Lyme Western blot are simply more meaningful than other, less specific ones and that a rational interpretation of a WB result should take this into account.

    Unfortunately, this does not often happen, and will happen even less with the CDC criteria.

    2. A second criticism of the CDC Western blot criteria is that they fail to include the 31 and 34 kDa bands.

    This does indeed seem like an odd decision, since antibodies with these molecular weights correspond to the OspA and OspB proteins of B. burgdorferi, which are considered to be among the most species-specific proteins of the organism.

    So why didn't Dressler et al. include them?

    Answer: These bands tend to appear late if at all in Lyme disease patients, and did not show up with great frequency in the patients that the Dressler et al. group studied (though they did show up sometimes). As a result, they weren't deemed to have much diagnostic value and didn't find their way onto the CDC hot list.

    However,
    * while the absence of either of these bands from a patient's immunoblot result does not rule out Lyme disease,
    * their presence is hardly meaningless.

    Thus, many Lyme disease experts believe it is a serious mistake to exclude these 2 antibody proteins from the list of significant bands.

    The CDC's decision to do so seems particularly strange in light of the fact that it is the OspA component of Bb that is being used as the stimulating antigen in the ongoing experimental Lyme disease vaccine trials.

    As one immunologist remarked shortly after the 1994 CDC conference, "If OspA is so unimportant, then why the heck are we vaccinating people with it?"

    3. Finally, it is important to keep in mind that no matter how carefully the Western blot test is carried out and interpreted, its usefulness, like that of all tests that measure B. burgdorferi antibodies, is ultimately contingent on the reliability of the human immune response as an indicator of exposure to B. burgdorferi.

    There are several scenarios in which the lack of a detectable antibody response may falsely suggest a lack of B. burgdorferi infection:

    1. First, it is well established that early subcurative treatment of Lyme disease can abrogate the human immune response to B. burgdorferi [3]. Although this is not thought to be a common phenomenon, a recent comparative trial for the treatment of erythema migrans found that a majority of patients who failed early treatment and suffered clinical relapse were seronegative at the time of relapse [4].

    Even treatment for disseminated Lyme disease, in which the patient's IgG immune response was previously well-established, can render a patient seronegative after treatment despite post-treatment culture-positivity for B. burgdorferi [5, 6].

    2. In addition, patients with Lyme disease may not test positive for exposure to B. burgdorferi because their antibodies to the organism are bound up in immune complexes [7]. Once steps are taken to dissociate these immune complexes, free antibody can be detected; however, this is not routinely done when performing serologic tests for Lyme disease.

    3. Finally, an indeterminate number of patients with late Lyme disease are simply seronegative for unknown reasons [8]. The actual percentage of such cases as a proportion of all Lyme disease cases is impossible to estimate, since most studies of late Lyme disease enroll only seropositive patients, which tends to reinforce the circular and erroneous notion that virtually all patients with late Lyme disease are seropositive.

    4. It should also be noted that a positive Western blot is not necessarily an indication of active Lyme disease. A patient's immune response to B. burgdorferi can remain intact long after curative treatment for a Lyme infection; therefore, the results of a Western blot assay should always be interpreted in the context of the total clinical picture.

    Addendum by Joachim Gruber: Carl Brenner is one of 2 patients who sit on the National Institute of Allergy and Infectious Diseases (NIAID) Advisory Committee for Clinical Studies on Chronic Lyme (information from Ramp S, The dirty truth behind Lyme disease research, Lyme Times 26,7, 1999).


    [This Message was Edited on 01/03/2008]
  13. Poppy2

    Poppy2 New Member

    Sure hope you start to feel better. Iv'e just ordered a ignenex test myself, will be interesting. Good Luck Poppy
  14. victoria

    victoria New Member

    please remember that just because your blood tests showed negative for likely co-infections such as ehrlichiosis, bartonella or babesiosis -- it doesn't mean you don't have them unfortunately!

    The blood tests for them are much less reliable than the IGenex WB. My son's tests only showed the bands required by CDC for tracking, but no co-infections... yet his symptoms over time clearly reflected probable bartonella and babeosis, and he clearly herxed on treatment specifically for them.

    As the CDC says itself, no blood test is 100% reliable anyway, and it's supposed to be the clinical picture that the pt present with that counts the most...

    all the best,
    Victoria

  15. highcotton

    highcotton New Member

    I'm reading it now -- it's called Healing LYme. He says to take his core protocol with antibiotics. His protocol is really inexpensive.

    It's well worth the read -- very informative.

    peace,
    Highcotton
  16. mollystwin

    mollystwin New Member

    Hi there! We go to the same doctor!! I really like him a lot. He is very knowledgeable and dedicated to treating lyme. His wife has lyme and he is recovered from it.

    Good luck in your recovery!!

    dar
  17. buttercakes

    buttercakes New Member

    Really, how ironic that we have the same doctor. I have only seen him twice, but really like him alot. He told me about his wife, but did not tell me he also had lyme. I
    really like that he uses the natural approach. Im still so shocked my test was positive after having 3 negitive test I started to think it was hopless. Funny how this disease is, my test were negitive when i was at my sickest. Its hard to believe theres so many Lyme patients out there. well i hope you have a good weekend and who knows mabey well run into each other at our next doc visit. hope your feeling well.
    Sandie
  18. buttercakes

    buttercakes New Member

    Good luck with your test, I think i almost have a peace about me, now that i know the truth, at least I dont have to lay in bed at night wondering whats wrong with me. Now my healing can begin. Let us know when you get your results.
    take care sandie