jarjar...Victoria... anyone..

Discussion in 'Lyme Disease Archives' started by Kimba4318, Sep 12, 2006.

  1. Kimba4318

    Kimba4318 New Member

    Hi - you have helped me so much in understanding lyme disease... If you have time to read my post on the FM site (can Rheumy treat .for EBV and CMV)....

    My infectious disease doc just told me that she cannot test for lyme in my blood and it is so misunderstood.. blah blah blah... just see your rheumy. If you have fluid in your joints then have the fluid extracted and that should be good enough. DIet and exersize is the key - hmmmmmm - sounds like a write off to me! So sick of this.

    I told her I wanted more than the Western Blot test and she said what is above. What should I ask my Rheumy exactly to test for? I have mentioned in the past - I have been positive twice, once had the bullseye rash and was only treated for 2 weeks on Doxy each time - don't even think I took the full 2 weeks worth, not knowing how harmful this could be back then. She said that was more than sufficient and it should be gone.

    I now have red dots on my torso and back... don't know what that is about - my joints hurt terribly.

    Can you give me any more advice... cannot find a lyme doc in my area, nor one that accept my insurance (Care First).

    Thanks a bunch!
    Kim



    [This Message was Edited on 09/12/2006]
  2. ANNXYZ

    ANNXYZ New Member

    do an Igenex Labs test for lyme. It is most relaible.

    If you have tested positive , then you most likely have
    lyme, so it would seem you need to find a doc who will work with you .

    If you do not have access to ABX immediately and want to do something to get started in killing the bacteria , you could check out the Cowden protocol and samento .

    There is also abook by Stephen Buhner called " Healing Lyme " that some have had good results with .

    The samento can be purchased online w/0 a script .

    It sounds like the doc you have is not supportive and
    that you should find someone helpful.
  3. jarjar

    jarjar New Member

    Don't have much time to write but you might go to the Dr. referral section of lymenet to find a Lyme Dr. close to you.

    jar
  4. victoria

    victoria New Member

    I would've gotten nowhere trying doctors in/around Atlanta despite it having Emory Med school and being a major city... it is estimated a 'typical' chronic lyme pt will spend an average of $65K before getting the dx!

    Best advice I got was to go directly to the best doctors, thankfully one was within 200 miles, making it a day round-trip... but if we'd had to go further, I would've.

    Many, many pts of the LLMDs are coming from all over the US as well as from Europe after having seen other doctors and not getting help, as most doctors just don't take the time to read the information/research that is available. My son's doctor sees pts from all lower 48 states plus Europe.

    Since 1) it is well known that lyme alone takes 28 days to replicate, and also well known that it can hide out; and 2) it is also more the rule than the exception to have co-infections, altho the tests for these are even less reliable--

    It comes down to a doctor having the guts to treat a patient based on 'clinical' symptoms, as no test is 100% reliable anyway for anything ... for some reason, doing this with Lyme has become political. Probably because of health insurance companies.

    Good luck, and hope you are able to go to an LLMD... it is worth it!

    best,
    Victoria
  5. jarjar

    jarjar New Member

    You mentioned about western blot. Most lyme docs rely on the Igenex Western Blot. That is all you need plus a doc that is Lyme Aware to look at it.
  6. Kimba4318

    Kimba4318 New Member

    and does it cause swelling in joints? I have my right knee swollen with fluid in it - the Rheumy said it was bursitis and gave me a cortisone injection - said that would take care of it. Well, it did not and now even more swollen, just in another part of the knee.

    Just wondering if that coudl be part of Lyme as well? Also, when I lift my leg - my knee cracks 2 x , everytime I do it, you can feel it "clicking". Just wondering... guess I'm just falling apart.

    Thanks again!
    Kim
  7. victoria

    victoria New Member

    can cause swelling and also pain moving around in joints/muscles. It hits wherever and however you are genetically susceptible...

    it can reside inside and in between cells, can form cyst-sacs to hide out from abx, etc., etc. It is a very devious little devil!

    Hope you can find a LLMD in your area; if not, it is worth it to drive or whatever you have to do to get to one.

    all the best,
    Victoria