Discussion in 'Fibromyalgia Main Forum' started by ginlyn07, Jun 7, 2009.

  1. ginlyn07

    ginlyn07 New Member

    Hi Nanie,

    I wanted to let you know what I know about my lyme test. The nurse couldn't tell me to much, but that I had i gg band 41kd show up. Does that mean anything to you? I don't get to go to the doctor until July 29th. Every morning I was having this pink phlem too, but doctor didn't seem to concerned, but when on the steriods that stopped, but now that i am off them its back.

    I want to get the test done you suggested, do I order the kit and take it to the doctor?

  2. Nanie46

    Nanie46 Moderator

    Hi Gin,

    Band 41 is the flagella (tail) of an organism.

    My first western blot, not done through Igenex, showed only band 41 like yours.

    My second western blot done through Igenex a month later, showed many bands present.

    It is very possible to only have band 41 and have lyme.

    It's just that non-LLMD's don't know enough about diagnosing lyme, so they would say you don't have lyme from looking at that one test.....which is wrong.

    You can order the kit by calling Igenex or emailing customer service on the site.

    You take the Dr's order form (included with the kit) to the Dr to get him to sign the order.
    He should order test #188 and #189, western blot IgG and IgM.

    The Dr's secretary can fill in the Dr's address, phone, fax# and Dr number, etc.

    You fill in the payment info.

    There is a paper included also that is an instruction sheet for the lab.

    There is also a history form for you to fill out and send back also.

    Take the kit and all the paperwork with the fedex packaging to a lab and get your blood drawn in the morning on a Monday or Tuesday, so that the blood is received in CA via 2 day fedex before the end of the week.

    Get your blood drawn at a lab that sends labs out daily via fedex.....alot of hospital labs do this. The lab has to prepare the blood before it is sent.

    Call the lab to see if they do fedex labs and what time of day they go out.

    Remember that when your Dr tells you that you don't have lyme....lyme is never, never ruled out by just a negative test.

    It is a clinical diagnosis based on history and symptoms.

    If it were me, I would call the Dr office, and leave a message that you would like the Dr to order a western blot through Igenex. Tell them you are paying for it and it is your choice to have it done.

    Tell them you have the Dr order form and you will take it to them or mail it to them...or you/they can print one off of the Igenex site......see link for the "patient test request form"...

    He probably never heard of Igenex like alot of Dr's. Tell them it is a reference lab specializing in tick borne disease and they test for all bands, unlike the other run-of-the-mill labs.

    Ignenex tests for 14 IgG and 14 IgM bands. Other labs only test for 10 IgG and 3 IgM bands.

    Other labs leave out some very important lyme specific bands which is incomplete and innacurate.

    Steroids are terrible for lyme patients. Try to avoid them until you get all this figured out.

    Here are 2 good resources that have symptom checklists...I may have given you these already, I don't remember.....

    Feel free to leave posts for me on the lyme board.

  3. ginlyn07

    ginlyn07 New Member

    What is Peridontal disease. Never heard of it.
  4. ginlyn07

    ginlyn07 New Member

    After I re-read what you typed I figured it out and looked it up. LOL