Lyme questions - CFS related

Discussion in 'Fibromyalgia Main Forum' started by isiselixir, Nov 12, 2009.

  1. isiselixir

    isiselixir New Member

    I need help. I am looking for test with Igenex and find an LLMD to treat for coinfections. Igenex seems complicated when I looked at their website. Can someone explain how to order a basic western blot and a babesia test? Also I am wondering if there are any LLMD docs in Southern CA. I don't want to use a site to find them if I have to give all my info to do it (one site was like this and even required a phone #). I was diagnosed with CFS in 2006 and I may very well not have lyme but I have to find out for sure. There's not much else I can do.
  2. victoria

    victoria New Member

    If you click on the Lyme board here, there is a top stickie with all kinds of resources.

    But the easiest/fastest/most confidential way to find a good LLMD is to go to lyme flash net, there's a special board just for finding doctors in your area. People will respond privately to you with info as to who is good, etc....

    good luck! I think CA has at least a few good LLMDs, unlike the SE US - they're very scarce there.

    all the best,

  3. mrdad

    mrdad New Member

    Sorry that you are not feeling well. I acquired a Igenex Test about three years ago. I'm
    only less than an hour from their Lab in Palo Alto so I went down and had the test done
    there! I suggest that you phone the Lab and ask to speak to a Lab tech about your concerns,
    they will take the time to explain differences and possibly make appropriate suggestions.

    I assume you have their phone no. as it is on their website. You may need an Order from
    your Doctor as they return (by Cal Law) the results to Him/Her. Has your Doc done other
    blood work in pursuit of answers?

    [This Message was Edited on 11/12/2009]
    [This Message was Edited on 11/12/2009]
  4. Nanie46

    Nanie46 Moderator


    You can call or email Igenex customer service to get a free test kit with a prepaid fedex label.

    The kit contains the Dr order form and instructions for the lab too.

    You should have blood drawn on a Mon or Tues morning so that it will arrive via 2 day fedex to Igenex before the weekend.

    The lab you have blood drawn at will have to prepare the blood and fedex it.

    Igenex is very helpful if you have any questions.

    A western blot IgM and IgG is test #188 and #189.

    A Complete Babesia panel is test #695 which covers Babesia duncani and Babesia microti.

    You will need a Dr to order the tests.

    You will have to prepay with a check or credit card. They will send you a receipt so you can send it in to insurance to try for reimbursement.

    Results take about 2 weeks. If you don't hear from your Dr about results in 2 weeks, you can call igenex to see if results are done. If they are, they can fax to your Dr (not to patient).

    Make sure you get a copy of all your results immediately from your Dr.

    Many, many lyme patients have only had negative test results but still have lyme.

    It is important to look at individual band results and compare them to info from lyme experts about lyme specific bands.

    Post your results on the lyme board.

    A negative test for lyme or babesia DOES NOT RULE OUT lyme or babesia. I cannot stress that enough!!!

    The testing is not foolproof for alot of reasons. You are really looking for clues to support the diagnosis.

    Ways to find a LLMD:

    1. You can go to on flash discussion......sign up for free (I don't rememeber how much info they ask for, but it is a good site and I haven't had any problems) on the "Seeking a Doctor" on "create a post" and make a post asking for a LLMD in Southern CA.

    You will recieve a private message with name and info.

    2. Without signing up on lymenet, you can go to at the left side of the screen and find "Support Groups".

    Click on support groups. Then click on United States. Then click on California. Then click on the support group in your area.

    Contact the person in charge via email or phone and ask for names of LLMD's in your area.

    3. Go to Click on "Doctor Referral" at the top of the page.

    You will have to create a password. I'm not sure how much info they want from you.

    It takes much more than a lab test to rule out lyme. Lyme is a clinical diagnosis based on history and symptoms. It really does require a LLMD to sort it all out.

    I applaud you for taking steps to explore the possibility of lyme and coinfections as the CAUSE of your illness.

    All the best to you.
    [This Message was Edited on 11/13/2009]
    [This Message was Edited on 11/13/2009]
  5. victoria

    victoria New Member

    where have you been???

  6. isiselixir

    isiselixir New Member

    I am a little overwhelmed by this process but I don't want to leave this stone unturned.

    Thanks to nanie46, victoria, and mrdad :)

    mrdad - yes I have had blood work done and it has all come back normal including my lyme test but I've heard Igenex is more reliable so I figure I will try that