Do I have Lyme?

Discussion in 'General Health & Wellness' started by preci97, Dec 7, 2010.

  1. preci97

    preci97 New Member

    I have not been feeling well lately and made an appt with my doctor. I have been very tired and very achy, especially in my knees, arms and legs. I received my test results back and it was not conclusive. I am going to see an infectious disease doctor next week, but I'm so concerned about posts I have read regarding doctors not knowing enough about lyme. Could you please review my results and let me know what you think? Thank you!

    Lyme Reflex index 2.37
    41 kd IgG
    18 kd IgG
    39 kd IgG
    23 kd lyme IGM
  2. Nanie46

    Nanie46 Moderator

    Hi,

    It looks like you did not have a western blot from Igenex, but from a regular lab. Regular labs leave out some very lyme specific bands.

    With that said, you have some significant clues in your results.

    Dr Burrascano, a famous Lyme Dr, talks about Western blot results near the bottom of page 7 of this paper...please read that part....


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


    I can't copy and paste it because it's in pdf form.

    Look at what he says about the significant bands and then look at your bands.

    You will see that he says that the bands you have positive results on....18, 23, 39 are species specific (lyme specific).

    He also says you should have band 41 and you do.


    Another lyme Dr, Dr C in MO, says this about western blot results.....

    "When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have borreliosis and the testing is stopped right there.

    Screening tests that are positive are often followed by a test called the Western blot. The blot is a “confirmatory” test, as opposed to a screening test. (Blots are performed for other infections -- it is a type of test, not a test uniquely for the borreliosis bacteria.)

    Western blots are accomplished by breaking the Borrelia burgdorferi into pieces, and those parts of the Lyme bacteria are then embedded in a gel. Electricity is used to push antibodies made by the immune system through the gel. Antibodies that are made to attach to certain parts of the bacteria will bind to those exact parts that are embedded in the gel. When the antibodies bind to the parts of the bacteria, a black band is formed, which is then interpreted as IND, +, ++ or +++ depending upon the intensity or darkness of the band.

    Each part of the Lyme bacteria weighs a certain amount. For example, the tail of the Lyme bacteria weighs 41 kilodaltons (kDa). Think of kilodaltons like pounds, ounces or kilograms. The numbers on a Western blot such as 23, 31, 34 or 39 refer to how much that particular part of the bacteria weighs in kilodaltons. The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.

    It’s important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive. I presented research that supported this at the 1994 International Lyme Borreliosis Conference held in Bologna, Italy.

    For this reason I believe the screening tests are practically worthless, and is why I use the Western blot to “screen” for borreliosis, even though it is a “confirmatory” test. Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients false positive blot results occurred in only three percent of them, based upon research I presented at the 2000 International Lyme Borreliosis conference.

    Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the bacteria, there was a 97 percent chance they would feel better with antibiotics. Consequently, I tell my patients not to worry if the laboratory interpretation is “negative” or “equivocal,” if they have antibodies that are significantly associated with Borrelia burgdorferi.

    One thing doctors are taught in medical schools is to treat the patient, not the test result. If someone has chronic pain, fatigue, cognitive problems, blurry vision and/or neurological problems, and also has a significant antibody on a borreliosis Western blot, that antibody should not be ignored in my opinion, even if the ‘official’ interpretation is negative or equivocal. Remember, antibodies are very specific to what they bind, and borreliosis may cause virtually any symptom and any disease."



    Add in the fact that you have lyme symptoms such as fatigue and aches, especially knees arms and legs and it points to lyme.

    It is VERY IMPORTANT for you to know that lyme is a clinical diagnosis based on history, symptoms and exam.

    Lyme should never be ruled out with just a test that might be read as offically negative or inconclusive.

    Lyme testing is very unreliable and is not the basis for a diagnosis.

    Lyme literate Dr's know these things.

    99% of other Dr's do not know these things.

    Most Dr's would tell you that you do not have lyme and let you suffering forever.

    Most Infectious Disease Dr's are NOT LYME LITERATE. They follow IDSA guidelines instead of ILADS guidelines.

    Even if the ID Dr said you have lyme, he may treat you for a few weeks with low dose doxy and then declare you cured even if symptoms persist....and they likely will.

    You must educate yourself and advocate for yourself now.

    Lyme is one of the most complex infections there is. It is not easy to treat or "cure".

    The longer you have it, the harder it is.

    My advice is this......do yourself a big favor now.....go to lymenet.org.......click on flash discussion..........sign up for free......click on the "Seeking a Doctor" board.....create a post asking for a LLMD in your state.

    Then go to the "Medical Questions" board. Read posts and post your questions. You can use the search feature to look up past topics.

    I am Dekrator48 on lymenet.org.

    Many people with lyme also have other tick-borne infections that complicate the illness, such as Babesia, Bartonella, and Ehrlichia.

    You need evaluated for those too or you may not get better.

    Here are some other important links that you must read.....


    This talks one about the IDSA vs ILADS guidelines approach to treatment:


    http://www.lymenews.org/d_CALDA_TwoStandards_7_2006.pdf



    http://www.ilads.org/lyme_disease/about_lyme.html



    http://www.lymepa.org/Basics2007v1.2Rev.pdf



    http://www.lymedisease.org/lyme101/lyme_disease/lyme_disease.html



    You can post questions on the lyme board here too. It just isn't very busy.

    I am happy that you are questioning your inconclusive test results.

    Act now, so that you will not deteriorate and spend the rest of your life very sick and possibly disabled.

    Good luck to you!