i called doc for a lyme test

Discussion in 'Fibromyalgia Main Forum' started by loto, Mar 31, 2009.

  1. loto

    loto Member

    I left a message for my doctor to order a lyme test done. I've heard on here to get an igenex one, do most insurances cover that??? I'm feeling fortunate that my primary doc is supporting me in a way that he's doing whatever I ask for!! Ok, in that case, someone tell me what else i should be tested for!! I'm only diagnosed with FM and now I'm iron deficient, have acid reflux. My main concern right now is that my white count was high last week. I know it's possible that could be caused by inflammation or other stuff. Anyway, bring it on!! I'll get whatever everyone tells me to get, since my doctor will agree to it all!! I just want as many answers as I can get to all my ailments!
    Thanks
    Lori-loto
  2. Nanie46

    Nanie46 Moderator

    Hi,

    Igenex is definitely the lab you want to use. Have him order a western blot IgG and IgM, test #188 and #189, total cost is $200. www.igenex.com

    Call or email them for a free test kit with prepaid fedex mailer. Dr order form is with the kit or a patient test request form can be printed from their website.

    It must be prepaid, except they do accept medicare. They will send you a receipt that you can send in to your insurance co.

    Do not let you Dr tell you that you don't need to test through Igenex. He may try to tell you that he can test you through your regular lab. That is a total waste of time and money.

    When your Dr gets your results, make sure you get a copy right away. It may even say CDC negative, Igenex negative, and you can still have lyme. The important part is each individual band result.

    When you get your results, post your band results on the lyme board. Compare them to the western blot info on page 7 of Dr B's guidelines....see link.....

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

    Remember that there is no test for lyme that is 100% accurate. Igenex is degfinitely the best. They test for all bands, when other labs do not. They also included more species of borrelia when they developed their testing methods. There are 100 species of borrelia bacteria in the US, over 300 worldwide.

    Lyme is a clinical doagnosis...means it is made based on history and symptoms and can be supported by labwork. A good Lyme literate MD who follows the ILADS guidelines is who you want to help you sort out if you have lyme and commonly associated coinfections like mycoplasma, babesia, bartonella, ehrlichia, etc.

    Check out they lyme symptom checklist in the back of this great booklet......

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

    If you have a number of symptoms on that list, you should be suspicious. Lyme can present in many different ways.

    If you have other questions for me, feel free to go over to the lyme board anytime and post your questions. I will answer promptly.

    Good luck, I hope you get some answers so you can get well.

  3. loto

    loto Member

    the doctor's office just called back and said they're sending the order out for me, so i'll go tomorrow, or today after work and get the blood drawn. I told them I was told to do the Igenex, and she said she didn't know about that, but they do perform the western blot test that tests the different levels or whatever you call it!!! So, hopefully I'm getting a thorough test done here. Couldn't afford to have to pay for it out of my pocket, even though at this point I can't put a price on my health! She told me it could take up to a week to get the results back. UGH! Waiting is the hardest part. I don't want it to come back positive or anything, but I just want to know if more than FM is going on in my body! I've definitely been bitten by ticks at least once per summer. There are fields all around my home, and deer graze through all the time. In fact, ticks are pretty bad around where I live. We spray around the immediate vicinity of the house, but I also go out in the field quite a bit. Try to remember to use repellent, but not everything always works, and I just get careless alot. Anyway, I'm going on and on again, so I'll stop now. But, again, thank you for your info and advice. I'll post my results when I find something out next week.
    loto
  4. Nanie46

    Nanie46 Moderator

    Hi loto,

    You are welcome. Just keep in mind that it is likely to come back negative from that lab.

    That lab will only test for 10 IgG bands and 3 IgM bands. Igenex tests for 14 IgG bands and 14 IgM bands. Other labs leave out some very important species specific bands.

    Then when your test says negative....which is only a reporting criteria anyways...your Dr is likely to say, "lyme has been ruled out...it is not your problem"...which is untrue. Reporting criteria is not a diagnostic criteria.

    Lyme is never ruled out based on just a lab test.....that is very important for your Dr to know.

    Anyone who has FM or CFS has more going on than that because those syndromes have a CAUSE that DR's never bother to try to find. It is likely that most cases are infectious.


    You may want to make sure your Dr is familiar with the following guidelines for management of lyme:

    http://www.ilads.org/files/ILADS_Guidelines.pdf

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


    I really encourage you to go to lymenet.org....click on flash discussion....sign up for free like you did here......then go to the "Medical Questions" board there. Start posting your symptoms and story and any questions you have. It is a very active lyme board and you will get many quick answers from alot of very knowledgable people. It is wonderful.

    You can go to the "seeking a Doctor" board there also and post "Need a LLMD in Maryland" or what ever state you live in.

    More important than just a test is your history and symptoms. If you have a history of tick bites, that is very strong evidence. then add your symptoms and that can be enough for a clinical diagnosis.

    Only a good LLMD is able to sort all this out...plus most people have coinfections from those ticks too which have to be treated also.
    [This Message was Edited on 03/31/2009]