just beginning to consider Lyme

Discussion in 'Lyme Disease Archives' started by nink, Feb 9, 2009.

  1. nink

    nink New Member

    I've been dx with CFS and Fibro. Have had so many sxs for so long I can't remeber what it felt like to be anywhere near well. Have posted on another board (lymenet) for LLMD. Got the name of Dr. C in Springfield (about 600 miles away)and was told necessary test is Western Blot by Igenex. He is so far from me I'm in process of writing to him to see if he will order test for me without seeing him in person and go from there.

    Anyone have other ideas? I'm afraid to get my hopes up. I have pretty much accepted that I am somewhat functional and that's going to be as good as it gets, but since I am helping my elderly parents, the demands on me keep increasing and sone of these days I'm just not going to be able to do everything.
  2. Nanie46

    Nanie46 Moderator

    Hi,

    I am glad you are considering lyme. I just figured out a couple weeks ago that I have lyme. I just had my first LLMD appt today...it was fantastic and 6 hours long!

    I started 3 antibiotics tonight and I am optimistic that I will get better. I am going to post the email message that I sent my family and friends.

    You can try asking any Dr to order the test.....tell them many people who have been diagnosed with CFS and FM have later been found to have lyme.

    Then tell the Dr that since you are paying out of pocket for the test it is not a reimbursement issue for the Dr. Tell him that you have the right to choose what you want and this is what you want.

    You can always say that you think he is a caring and compassionate physician, and this is the direction that you want to go in. (sometimes you have to stretch the truth to get what you want).

    Make sure you get a copy of your Igenex western blot results. Compare them, band by band, to Dr Burrascano's guidelines. Even if the overall interpretation says "negative", you could still have significant postive bands for lyme....I did.

    Do not let a Dr talk you out of the Igenex western blot if he says you don't need it. I'm sure the LLMD wouldn't do that, but alot of other Dr's would...it happened to me.

    Hang in there and don't give up. Demand what you need and want....in a nice way.

    Good luck!
  3. victoria

    victoria New Member

    Just my opinion... I would go to see Dr. C or almost any other LLMD and not waste time and money with others.

    Given the clinical picture most pts present with by the time they go to a LLMD, I have never heard of any not ordering at minimum the IGenex WB, and usually more, as more often than not there are other diseases since ticks usually carry more than one. There are also other stealth pathogens not necessarily passed by ticks but wreak the same generalized havoc that Lyme & Co (co-infections) do.... and the same abx etc overlap in what they work on anyway.

    so even if you find a local doctor to order it, s/he may not order from IGenex, and even if they do, they won't necessarily know how to interpret it even if it is CDC positive. And given the political controversy over how to treat it, won't likely treat you with more than the minimum, which is not enough unless it's a new infection.

    Hope that makes sense.... fading fast tonight. Let us know what happens?

    all the best
    Victoria

  4. zena01

    zena01 New Member

    Hi, to get a head start, and so that you have test results more quickly before your first llmd visit, you might now, ask your regular doctor to sign off on the test order form. That's what I did.

    I went to the igenex website, ordered the test kit, and took it in to my regular doctor and said will you sign this so i can get these tests? (i ordered western blot and co-infection panel) He said i'm sure you don't have that, but sure, if you want to be tested, I'll sign for it. I told him that I had like 80 of the 90 someodd symptoms on one symptoms list.....so he signed it, and i took it down to the lab, had the blood drawn and the lab guy sent it off for me. (They include everything needed in the test kits you order)

    I researched llmds while waiting for the test results....when the results came back my doctor sent them to me. Then, I imediately made the appoint with the llmd I'd found, told them I have test results igenex positive cdc negative, got an appointment, and started treatment.

    Just thought if you have a good relationship with your regular family doctor doing it this way might make everything easier. It worked out great for me cause it got my doctor here on board, he knows all about my treatment for it, they send my records back and forth so both know all which has to be better for me......and he ok's the lab here to do whatever bloodwork the llmd needs as we go along. As I am in a different state from my llmd this really makes it all easier.

    zena


    [This Message was Edited on 02/20/2009]
  5. maps1

    maps1 Member

    I am in Canada and have just received my kit from igenex but i am unsure of what tests to order and was hoping you could advise me.

    This has been on my mind for so long and i know there can be co-infections so i don't want to order a test that does not give me the full information, which will leave me still in doubt.

    I have also received the test kit from the U.S. for mycoplasma pneaumonia (sp) using the pcr method. I tested positive for this several years ago and the tests done here come back inconclusive or negative but they are not using pcr.

    I have been sick since 2003 and am now 63 and my life is dissapearing fast, the last year has been continues illness and i have reached the point of an all or nothing approach.

    Stopped all physciatric meds and have been seeing a naturapath and now i need to know if i have any of these infections in my body but i don't want to make a mistake in the ordering of the tests.

    Any and all input would be greatly appreciated.

    regards
    maps
  6. nink

    nink New Member

    Thanks for the suggestion. I do have an excellent relationship with my primary care doc and believe he would order the tests for me, but I'm not certain which tests to start with.

    And to another poster (sorry - can't remember names) - I am totally with you. If I am going to pursue this, I am going to do so with a LLMD, and not waste time or money on a physician who is not knowledgeable, skilled, and experienced.(Beyond getting my PC doc to order the tests).
  7. Renae610

    Renae610 New Member

    Even if you have a good primary doc, he/she is most likely not knowledgeable enough to test and treat this complex disease. It is often not simply Lyme but a mix of pathogens (bacterial and viral coinfections).

    I strongly recommend that you find an LLMD to diagnose you, and then consider carefully what protocol to use. There is alot of debate as to using antibiotics, a natural protocol or both. If you have Chronic disseminated Lyme, my research tells me a natural approach (such as using NutraMedix herbs and other supplements to treat deficiencies) is best.

    If you choose a natural approach to treat, I recommend you find an LLND (Lyme Literate Naturopath) who uses BioMeridian Biofeedback to assess how your body systems are functioning and what products/dosages you need. This takes the guesswork out of the process and saves alot of time and money. You will know when to cycle through the right herbs according to the stage Lyme is in. You will know on a scale of 1-20 whether your body is breaking down and absorbing things or if Candida is blocking cell receptor sites. The machine will tell you if you need to switch products for Candida too, if one product is no longer effective.