Looking for answers

Discussion in 'Lyme Disease Archives' started by daniajo, Jul 6, 2009.

  1. daniajo

    daniajo New Member

    Hi,
    I was diagnosed with FM last October. In the beginging of my sickness I had thought that I had lymes disease. I had two tests done and they both came back negative. I did go to my doctor with all my symptoms and convinced him to put me on antibiotics. It was only for 10 days and did nothing for me. I just want to know how i convince my doctor to treat me when he thinks I do not have lymes. Plus I can't remember ever having a tick on me.
    What kind of doctor specializes in lymes?
    Here are some of the symptoms that I have been having for the past year:
    MRI found spots on my brain
    insomnia
    night visions
    tingling in arms and feet
    headaches
    sore throat plugged ears
    heart skips
    chest pain
    twitching
    fatiuge

    Please help!
  2. Nanie46

    Nanie46 Moderator

    Hi,

    99% of Dr's know nothing about lyme...let alone chronic lyme. Trying to convince your Dr to treat you, may be next to impossible. 10 days of antibiotics would not help you at all if you have chronic lyme.

    Lyme literate MD's (LLMD) are the Dr's who are ILADS trained and believe in chronic lyme and treating with long term antbiotics.

    I don't know which lyme tests you had (ELISA? Western blot?), but those tests are very inaccurate.

    The most accurate lab for Lyme testing is Igenex in CA. www.igenex.com

    You could get a western blot IgG and IgM, test #188 and #189....cost $200 must be prepaid with check or credit card. You still need a Dr's order.

    You can call them for a free test kit.

    Igenex tests for all bands on their western blot (other labs do not, which is incomplete and inaccurate.

    Igenex also includes more than one strain in their testing methods.

    Here is some really good info from a lyme expert....including a symptom list on p 9-11, western blot info on page 7, and coinfection info pages 22-27.


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


    It is important to note that Lyme is a clinical diagnosis.....it's based on history and symptoms. It is never, never ruled out by just a negative lab test, yet Dr's do this all the time.

    I would advise you to see a LLMD. You can go to lymenet.org.....click on flash discussion....sign up for free like you did here.....Create a post on the Seeking a Doctor board asking for a LLMD in your state.

    Lymenet also has a great Medical Questions board where you can post your questions. There are alot of intelligent people there with lots of experience. You will get more responses. I post on there also as Dekrator48.

    Your symptoms are very suspicious for lyme and possible associated coinfections like bartonella, ehrlichia and babesia.


    I do not remember a tick bite or a rash either. I had a FM diagnosis for 21 years before figuring out on my own that the CAUSE of those symptoms is borrelia burgdorferi...the bacteria that causes lyme.

    Borrelia is the most complex bacteria identified to date. It is not easy to treat once the bacteria has disseminated throughout the body.

    Other sites with great info....

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


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


    Let me know if I can help you further.