gb66: Lyme testing

Discussion in 'Lyme Disease Archives' started by Nanie46, Sep 1, 2009.

  1. Nanie46

    Nanie46 Moderator

    Hi,

    Your story sounds highly suspicious for lyme and coinfections.

    I am glad you are pursuing this as a cause after so many years.

    I need to make a very important point before I explain about testing.......

    Lyme should NEVER, NEVER be ruled out based on just a negative lab test, although 99% of Dr's mistakenly do this all the time.

    Lyme is a clinical diagnosis....it is based on history and symptoms. It can be supported by labwork, but it is not necessary......again 99% of Dr's do not know this.

    Igenex lab in CA is the lab where you should have lyme testing done.

    You should go to www.igenex.com

    Call them or email customer service and ask for a free test kit.

    It comes with a prepaid fedex mailer and all the paperwork, including the Dr's order form.

    You may want to start with having just the lyme test.

    Igenex requires prepayment by check or credit card. They do, however, accept medicare if that applies to you.

    They will send you a receipt that you can then send into your insurance to see if you can get reimbursed.

    For lyme testing, you need test #188 and #189....the Western blot IgM and IgG.

    Igenex is the only lab that tests for 14 IgG bands and 14 IgM bands.

    Other labs only test for 10 IgG bands and 3 IgM bands! Those labs leave out some very important lyme specific bands.

    It is very important for you to know that lyme testing is not foolproof by any means.

    This test looks for antibodies against the lyme bacteria.....it does not look for the bacteria itself.

    The bacteria, Borrelia burgdorferi (lyme), is usually not found in the blood. This very complex bacterial spirochette is found in all the body's tissues......organs, tendons, muscles, etc.

    It is VERY COMMON for people with chronic lyme to have an officially negative result on these tests.

    The way it is reported is "CDC negative" or "positive" and "Igenex negative" or "positive".

    Those are only REPORTING criteria they are using, not diagnostic criteria, which leaves many people who have significant bands present, with an officially negative result.

    Also, many times, a person's immune system is no longer producing antibodies against the bacteria.

    The tests are only able to detect antibodies to 2 strains of Borrelia.....any variations of borrelia that have not been identified or have not had tests developed for, will not be detected.

    It is SO VERY important to not allow a Dr to rule out Lyme just by looking at results that say "CDC negative".

    That is the very biggest mistake that Dr's make in knowing how to recognize and diagnose lyme.

    Take your Igenex test kit and go to a lab that can draw your blood early on a Monday or Tuesday and can then prepare the blood and fedex it for you the SAME DAY.

    Your blood should arrive at Igenex within 2 days...you want it to get there before the weekend.

    You do not want to be on any immune supressing drugs or antibiotics when the test is done.....be off for at least 2 weeks....any questions..call customer service.

    You should have results within 2 weeks. Igenex will only release results to the Dr. If your Dr does not recieve the results, you can call Igenex and ask them to fax the results to your Dr.

    Make sure to get a copy of the results from your Dr right away.

    Do not be discouraged if the results say CDC negative.....mine did and also many others.

    Post your individual band results here and on the Medical Questions board at lymenet.org

    It is important for you to be educated about lyme before you approach a Dr about why you want this test from Igenex.

    Read as much as you can about lyme from these sites....read about the western blot on these sites and how to interpret the results......


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

    page 7 of the above paper contains very important western blot info....this is the most important paper you will read, so read the entire thing.


    other sites you must read:


    http://www.drcharlescrist.com/testing.htm

    the above site also contains very important western blot information.




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



    http://www.harp.org/Twostandardsofcare.htm



    http://www.lymediseaseassociation.org/



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




    Dr's who are the real experts on lyme belong to ILADS. They know that long term combination antibiotic treatment is necessary for recovery.

    Lyme literate MD's (LLMD) can be found through the Seeking a Doctor Board on lymenet.org or through a good Lyme support group in your state.

    99% of Dr's do not understand lyme and the associated common coinfections like babesia, bartonella and ehrlichia.

    They will not know how to recognize, diagnose or treat lyme and coinfections.

    Most people do have to travel to see a LLMD. Some states have more than others.

    You may want to have the coinfection testing done after the lyme testing. It is also not 100% accurate, and can miss alot of cases of babesia, etc.

    Some coinfection testing is done at Igenex and some at other labs.

    I urge you to go to lymenet.org.....click on flash discussion.......sign up for free like you did here...........click on the Medical Questions board and create a post telling your story....just make short 1-2 sentence paragraphs with double spacing for all the people who cannot read long run-on paragraphs due to neurolyme symptoms.

    You will get the opinion of many very intelligent people with lots of experience.


    Good luck, let me know if I can help you further, in any way.








  2. momof3inks

    momof3inks New Member

    Thank you so much for your help. this is very helpful and I am going to order the test. I pray that I can find an answer to the reason I and so many others have FM. I'm also grateful for this message board as Ive cried myself to sleep many times wondering what malfunction has taken over my life. I'm only 33 yrs old and I think I've had this for 10 years.
  3. Nanie46

    Nanie46 Moderator

    Hi,

    You are welcome!

    Please come back often.

    I hope you find the cause of your illness and recover.

    All the best to you!
  4. gb66

    gb66 Well-Known Member

    Thank you for the information. I am going to save it to a folder for future reference when I find a good doctor. GB66