Western Blot Lyme Disease test

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by pastorwife, Jun 9, 2011.

  1. pastorwife

    pastorwife Member

    I am going to my PCP Sat. If I ask for a Western Blot Lyme Disease test, is this something a typical lab will know about or are there only a few that do this?
  2. Nanie46

    Nanie46 Moderator

    All labs can do it...most are done my LabCorp or Quest...HOWEVER those western blots usually come back negative and are very unreliable.

    A negative test result does NOT rule out lyme disease, but that is what Dr's do all the time.

    It is more accurate to get a western blot IgG and IgM through Igenex lab in CA.

    www.igenex.com

    Most Dr's insist on doing an ELISA screening for Lyme disease first before doing a western blot, but the ELISA is so unreliable that it is worthless....yet Dr's rely on it all the time.

    If the ELISA is negative...and it almost always is......the Dr may refuse to order the western blot.

    I would print out the lyme disease check list on pages 9-11 of this paper...


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


    fill it out so the Dr can see all your symptoms.....and then request he order a western blot from Igenex.

    You will need the order sheet for him to sign which is online for you to print.

    Do this: go to www.igenex.com

    click on "forms and sample requirements", then click on "test request forms" .

    Then click on "Patient Test Request Form"...and print it out...2 pages (or 2 sided page).

    Dr must fill out the Referring Physician info on front page.

    Have him order test #188 and #189 on 2nd page near the bottom.....Lyme western blot IgM and IgG.

    Must prepay unless you have medicare...was $200 last time I heard.

    You can call Igenex (# on website) and request the free test kit which contains the tubes, instructions for the lab and prepaid fedex mailer.

    Have blood drawn on a Mon or Tues morning at a lab which can prepare the blood and fedex it to Igenex the same day....I used my local hospital lab.

    Even a CDC negative result on a western blot can indicate lyme disease.....Igenex tests for all bands...unlike the other labs which leave out very lyme specific bands which are very important.

    You are not getting the same quality of test with the other labs by any means.

    Read this:

    Dr Holtorf talks about testing a few paragraphs down from the top..."expanded western blot" means the western blot that Igenex does.

    http://www.prohealth.com/library/showArticle.cfm?libid=16301


    Also read the info on "Diagnosing Later Disease" and western blot information on page 7 of this paper...


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


    and read this important info from Dr C...a lyme specialist....you need an Igenex WB to be able to look for the lyme specific bands that he and Dr Burrascano talk about...the other labs leave them out!


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

  3. pastorwife

    pastorwife Member

    Thanks so much! Glad I saw this before my appt. I had heard of a lab in CA and it's probably the same one but at that time, the doc I had said it would cost $600 out of pocket. I do have Medicare and AARP supplement so anything approved by Medicare is covered 100% for me as long as the lab accepts their approved amount. Definitely worth the try. If this is Lyme, I want to know so I can get the appropriate treatment.
  4. pastorwife

    pastorwife Member

    WOW! all this info is so helpful! I printed out the checklist and completed it. I printed out the IGeneX forms and will discuss w/doc.

    Question: I lived in all parts of the US. Does the "Western" indicate Lyme found in those geographical parts of the country?
  5. Nanie46

    Nanie46 Moderator

    When you call Igenex to get the test kit, ask them about pricing for the Western blot for lyme IgM and IgG (test #188 and#189). Mine was $200 2 years ago.

    Medicare should pay for the test....should be a place on the Patient test request form for your medicare info...any questions, call Igenex customer service.

    The "western" in western blot does not refer to the area of the country. There are different species of Borrelia though.

    Do not despair if your western blot comes back CDC negative....like mine did.

    You must compare all your band results to the info on western blots by Dr B and Dr C that I gave you.

    That can give you a good clue..if you have even one lyme specific band, the lyme experts say that is all you need.

    It is also good to note that lots of people with lyme never have a positive test because testing is just not that reliable...looking for antibodies.

    There are lots of reasons why people have negative lyme tests even though they have lyme...

    read this:

    http://www.canlyme.com/seronegreasons.html


    Don't be surprised if your test is negative and your Dr proclaims that you can't possibly have lyme!....happens all the time because these Dr's are not lyme literate and do not understand the testing and how complex lyme is.

    Your best plan of action is to educate yourself as much as possible and then seek out a lyme literate MD no matter what your Dr says.

    3 Dr's told me I did not have lyme based on a negative test result!

    On lymenet.org there are hundreds of people who only tested negative and went through as many as 40-50 Dr's before finding a Lyme literate MD who could actually diagnose and treat them.

    Most people with lyme do not just have lyme...they have coinfections too which must all be diagnosed and treated...only a LLMD will do this.

    Here is some more info for you to read:


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


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


    http://www.jpands.org/vol14no3/maloney.pdf


    http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf


    lymenet.org's Medical Questions board is a very valuable resource also.
  6. Nanie46

    Nanie46 Moderator

    Hi,

    My insurance did not pay for the Igenex western blot.

    You can prepay (credit card or check) and then submit the receipt they send you to your insurance to see if they'll pay.

    I'm not sure what you meant when you said..."do you think a doctor would run a test closer to it if they have the information?"

    Only Igenex can run an Igenex western blot....a local lab can only run the junk western blots.

    It was worth the money to get the WB done there where they include lyme specific bands in their testing.

    If you absolutely cannot use Igenex, then use one of these 2 labs:


    Medical Diagnostic LABS, NJ; Webpage: http://www.mdlab.com/html/test_menu.html (test #313)


    Stonybrook, SUNY Stonybrook, NY Webpage: http://www.path.sunysb.edu/labsvs/ticklab.htm (there is a link you can click on for the test request form).

    Do not allow any Dr to order just an ELISA/IFA/lyme titer...it is worthless and my LLMD does not even bother with them.
    [This Message was Edited on 06/09/2011]
  7. Nanie46

    Nanie46 Moderator

    I just became aware of a new program that can provide assistance in paying for lyme testing if you can demonstrate you meet the guidelines.....here's the site...


    http://www.lymetap.com/
  8. greatgran

    greatgran Member

    My regular lyme test came back negative.. Later it was done through Quest Lab with the Western Blot.. it came back positive. Saw a LLMD and had many labs done by Igenex my western blot through Igenex came back lower than the one by Quest.. All co-infections came back negative with Igenex. But doctor says lyme.. Yes, medicare did pay for all my test ..as I had them done in Feb. and haven't received a bill nor have I received anything from medicare saying they did.. Hoping they did..

    Yes, I may have lyme as I feel terrible some days but so far no long term antibiotics.As the doc explained to me I have chronic lyme and there is no cure but treatment helps.. I am suppose to be on a gluten, sugar, dairy free diet with vitamins and supplements. Hate to say I have not been
    100% on any.. I have found the diet does help my pain.. Today I feel I need antibiotics..

    Such a disabling, unpredictable disease..

    Good luck,
    gg
  9. pastorwife

    pastorwife Member

    Did you get the bands with the results from Quest Labs? I thought antibiotics cured lymes, is that not true?
  10. greatgran

    greatgran Member

    Yes I got reactive bands with Quest.. This is the Quest report: 41 KD IgG abnormal, reactive.
    IgM abnormal reactive 23 KD .. Igenex labs were: IgM 18 +,/ IgG 41++, 34 + and 30+ My Babesic and Bartonella both negative.. So were my toxins, allergies,etc.

    From my understanding there is no cure for chronic lyme.. Lyme caught in the beginning, yes antibiotics is the answer .. As far as chronic lyme I think the question is still out on that one. I do know antibiotics made me feel terrible, partly herxing I guess but the LLMD told me my body wasn't ready for abx. I needed to lower inflammation and build my immune system, which abx can destroy..

    I am so confused with little answers.. as ever doctor seems to treat lyme differently.

    If I can help in anyway let me know.

    gg
  11. Nanie46

    Nanie46 Moderator

    Antibiotics can cure acute (early) Lyme disease if it is treated aggressively enough. Unfortunately the IDSA does not treat aggressively and many people then develop disseminated lyme, then chronic lyme.

    Once it is chronic (and spread throughout the body), it is muchharder to cure. Some people say they have been cured, and many others experience remission.

    The important part is that long term antibiotics can get you better. Maybe not 100%, but most people will take 80-90% better from what they are now because they are so sick and suffering.

    Most people would love to be very functional, sleep ok, think clearly, and have a good energy level, etc.

    That is what chronic lyme treatment is about...getting so much better.

    Almost everybody herxes on antibiotics....feels worse for awhile due to die off of bacteria.

    It passes and with enough time and patience, improvement comes.

    There are lots of ways to strengthen the immune system.

    My LLMD insists his patients follow a diet free of gluten, sugar, etc.

    I exercise and take alot of supps too. Bioidentical hormones have helped alot too.

    Doxycycline has helped me alot.

    There are many different things that need to be considered when treating chronic lyme because the chronic infection(s) have really had a domino effect on all body systems.







  12. greatgran

    greatgran Member

    Thanks, you explained so much better than I.. This is basically what my LLMD said. She thought I started out on to strong of abx. without preparing my body .. So have done my prep now its time to start with something that might help more. I must say the gluten, sugar, dairy free diet has helped along with the vitaims/supplements but far from where I would like to be. Sure would like the Bio. hormones but the doc says one thing at a time. I am planning on starting the abx this weekend..Now that I know what to expect.

    I am to start low and slow, then build up. Have you done the IV's?

  13. Nanie46

    Nanie46 Moderator

    Hi!

    I have not done IV's. My LLMD uses only oral meds. He says slow and steady wins the race.

    I'm glad that the diet and supps are helping!! That's great, even if you have a long way to go...it will all add up in the end!

    Will say a prayer for you as you start antibiotics.

    Remember that you can't finish until you start!

  14. richvank

    richvank New Member

    Hi, all.

    I just want to note that some of the LLMDs have added treatment of partial methylation cycle block to their Lyme treatment protocols, and I've been hearing from some of them that it helps.

    Note that Borrelia have been found to deplete glutathione in their "hosts," so if you buy into the Glutathione Depletion--Methylation Cycle Block hypothesis for ME/CFS, it isn't too surprising that some people with Lyme disease progress into having a partial methylation cycle block as well, and of course, that causes the immune system to become dysfunctional, which is probably just fine as far as the Borrelia are concerned, but not fine from the point of view of the unwilling "hosts"!

    Best regards,

    Rich
  15. Nanie46

    Nanie46 Moderator

    Thanks for the information, Rich.

    Could you post a link to the partial methylation cycle block treatment protocol?

    I think I am taking some of the needed supplements already and I would like to compare and see what I may want to change or add.

    Thanks again!
  16. lea

    lea Member

    will not order the IGenex test, maybe he will at least order the Quest with the following stated "list all bands".
    good luck
    best,
    Ann
  17. Scapper

    Scapper New Member

    Nanie----my doc said she would do the Igenex test if I order the kit.

    So, should I have her order test 188 and 189?

    Does she need to order any of the other tests listed on sheet?

    Pastorwife---how did you do at your doc appt? Blood-test done?

    I appreciate any guidance, my poor brain is SO fogged out, I cannot comprehend any of this :(

    scapper
  18. Nanie46

    Nanie46 Moderator

    Hi,

    That's great!!

    Yes, have your Dr order test #188 and #189, western blot for lyme IgM and IgG.

    I would start with those. You can always have further testing done later if you need it.

    Remember to get blood drawn on Mon or Tues morning and have lab prepare the blood and fedex it to Igenex the same day.

    Make sure your Dr fills out her part of the order form with fax#, phone#, Dr's ID #, signature,etc....and you fill out your part.

    Make sure you get a copy of your results from your Dr as soon as she gets them....mine took 2 weeks.

    A CDC negative result does not mean you don't have lyme.

    The band results hold some very important clues.

  19. Scapper

    Scapper New Member

    Thanks for your help!!!!!!

    I have no clue why I didn't do this sooner......I guess I kept believing docs / naturopath that I was "negative." I also never had "joint pain" and I seemed to be so classic CFS, that I never thought I had anything but.

    The last several years I've definitely had more neurological issues and INSANE symptoms added to the mix......so, the time is now!

    I hope you don't mind giving me some advice when I get my results (please :) I'm pretty lost w/ all of this. But, I don't see doc for another 3 weeks, when she will draw blood then and send out same day.

    I'll make sure I do some reading over the next 3 weeks......unfortunately for me, my comphrehension has declined.....I seem to be foggy allllll the time now.

    Anyway, thanks again, you have no idea how much I appreciate your guidance.....I feel less overwhelmed :)

    scapper
  20. Nanie46

    Nanie46 Moderator

    You are very welcome!

    Just post your band results here when you get them.

    In addition to all the links I posted in replies above, here are some good basic ones to start with:


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


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