2nd Lyme test came back positive

Discussion in 'Lyme Disease Archives' started by wld285, Feb 29, 2008.

  1. wld285

    wld285 New Member

    Which was no surprise to me. Now I am starting the same regimin as before.....200 mg doxy twice a day for a week, then 100 mg twice a day for 5 weeks. Then stop and be re-tested.

    I know my doc is very knowledgeable but I still wonder about the way he is treating the Lyme. I see him in 8 weeks when the tests come back. That was why I asked what made a dr a LLMD. At this point I have no other alternatives, there is noone that I know of to see that would be a day trip for me.

    If anyone has any ideas on ?'s I should ask when I see him, would be very much appreciated.

    Thanks all,
    [This Message was Edited on 03/01/2008]
  2. victoria

    victoria New Member

    Go to ilads.org in particular... that is the flagship to so speak for information on treating for physicians and patients and represents the mainstream LLMDs treatment protocol(s).

    here's also a partial list of reputable internet sites for info. There is info about how to treat properly here that you can print out, read and hopefully go over with him. One thing that should be used is Flagyl to break up the cysts that lyme can form almost immediately to hide from abx... other abx also may be needed as different strains of Lyme/Bb have evolved. Also, the probably co-infections such as bartonella, babesia, and ehrlichiosis need to be considered and a trial treatment given (tests for these are less than even 50% reliable).

    Lyme Disease Association, Inc.
    An excellent starting point in one's search for information on Lyme disease, The Lyme Disease Association, is a national non-profit organization which is dedicated to Lyme disease education, prevention, and raising research dollars. They have funded dozens of research projects coast to coast, sponsor an annual national medical conference and have become affiliated with several other organizations across the country to coordinate their efforts.

    Lyme Disease Foundation, Inc.
    Another national non-profit dedicated to finding solutions for tick-borne disorders. Founded in 1988, The Lyme Disease Foundation publishes the Journal of Spirochetal and Tick-Borne Diseases (JSTD), the first peer-reviewed scientific publication dedicated to tick-borne and spirochetal disorders.

    Lyme Disease Info Net
    A comprehensive online directory providing information on Lyme disease and other tick-borne diseases including medical literature summaries, Lyme advocacy, and complementary treatment information. The recent update is well worth another look.

    Turn The Corner Foundation (New York, NY)
    Turn the Corner is a foundation that is dedicated to the support of research, education, awareness and innovative treatments for Lyme Disease and other tick-borne diseases.

    International Lyme and Associated Diseases Society/ILADS
    ILADS, Inc. is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

    Lyme Disease Network
    The Lyme Disease Network has been on the internet since 1994. They are a non-profit foundation dedicated to public education of the prevention and treatment of Lyme disease and other tick-borne illnesses. Here you can find news, an array of information resources from legal to medical, and the highly recommended flash discussion groups, where moderated chat groups talk about everything from Medical Questions and Looking for a Doctor to General Support and Activism.

    Columbia University Lyme Disease Research

    Established in 1994, the Lyme Disease Research Program of the New York State Psychiatric Institute is the first in the United States to focus research efforts on the neuropsychiatric aspects of Chronic Lyme Disease in adults and children. Here you will find info on recent, current, and upcoming research studies on Lyme disease conducted in colloboration with their neighbors at Columbia Presbyterian Hospital. Most of the doctors researching Lyme here are on the faculty of the medical school of Columbia University.

    Hope To Heal Lyme
    Their Mission is to produce events that offer an integrative approach to healing Lyme disease. The integrative approach includes introducing expertise from Medical, Allopathic, Naturopathic, Complimentary and Holistic protocols. These events are designed to address issues of Lyme disease patients and their caregivers. The events are held in Lyme endemic areas of the United States and Canada.

    And a very good site is the Canadian Lyme Association's regardless of whether you're in US, Canada, or elsewhere:

    For alternatives to taking antibiotics etc, one place to look at is:

    and for other alternatives this is an interesting place, includes lyme amongst other things:




    I think I will start another post with all of this for general reference purposes for everyone... there is so much more, I'm sure others will be able to add to it!

    all the best,

    [This Message was Edited on 03/01/2008]
  3. wld285

    wld285 New Member

    Thanks for all the info you provide for others (like me). I have been educating myself, that is why I am a little worried about his treatment plan so far.

    Thanks again,
  4. wld285

    wld285 New Member

    Yes, to your question. However, I was only on doxy for 6 wks., then off a week, then re-test. I am still CDC positive for IGG. I thought 6 weeks was a little too soon, but then I thought his theory was....if you have just recently contacted Lyme, a 6 week antibiotic protocol can sometimes take care of it.

    However, now we are doing the same thing again...6 wks. Doxy, 1 wk off, then re-test. I have been going to start a post to see how often other people are tested.

    [This Message was Edited on 03/03/2008]
  5. wld285

    wld285 New Member

    I can't recall who Dr. B is, any hints? How did they find out you had babesia?

  6. munch1958

    munch1958 Member

    Try checking on Lymenet to find a LLMD in your area. If you go to the find a doctor section you can see if someone else in your area has posted. Otherwise, you can post a request. Someone will send you a PM with doctor names.

    Personally, I rather spend money on treatment than repeated Igenex WB testing. Testing is so poor I wouldn't rely on it to say I was cured. What about symptoms? Wouldn't that be a better indicator?

    Ask your doctor for a Fry Labs blood smear. I'm waiting for mine to come back. This is supposed to show what bacteria is in the red blood cells. Sometimes they see Borrelia parts, Babesia, Ehrlichia and Bartonella.
  7. Daisys

    Daisys Member

    You could ask your doctor if he belongs to ILADS. Most LLMDs do.
  8. munch1958

    munch1958 Member

    Here are the two most popular compilations of info for newbies:


  9. ritarhoads

    ritarhoads New Member

    Why only 6 wks treatment? When patients ask me how long treatment will last, I ask them, how long did it take you to get this ill?
  10. ritarhoads

    ritarhoads New Member

    I dont retest patients until they are symptom free. Why discontinue treatment while still ill. If no symptoms, then it makes sense to retest after a while, but I would wait longer than 6 wks.
  11. wld285

    wld285 New Member

    My sentiments exactly, but right now I have to follow my dr's instructions. I am on 6 wks again then another re-test. I have an appoint with him after this next test comes back (beginning of May). Then according to what he says is next, I will have alot of questions for him.

    I do have a question for you. The first time we talked after my diagnosis, we were talking about IV treatment. He told me it would be inserted in your heart. Can you shed any light on this one?