Discussion in 'Fibromyalgia Main Forum' started by 3gs, Jan 9, 2009.

  1. 3gs

    3gs New Member

    I am nervous about starting this because my doc is not the best support.

    Finally got him to run a Western Blot for Lyme after blood test 3 months ago showed eqvil. EBV very high. I have all the symptoms of Lyme.

    He told me he does "dabble" in this and co-infections. Wanted alot of blood work run but got the WB cbc and have to go back for Coristol as he only ordered the am.

    Please give me your opions as this board has been more help then any doc Ive seen. When you feel as lousy as I do how do you know if your reacting to something you are taking?

    I do have fibro and cfs[This Message was Edited on 01/09/2009]
  2. mysticbrit

    mysticbrit New Member

    I'm not sure how confident I'd be going to a dr. who likes to "dabble" in infections. Doesn't sound exactly professional.

    Do you know there is another board here that deals exclusively with Lyme? If you don't receive that many responses here you might post your thread on the Lyme board. I'm sure those folks could give you alot of support and information about meds.

    Good luck,
  3. Nanie46

    Nanie46 Moderator


    The best info about lyme comes from Dr's who are experts in the field of lyme treatment.

    Dr Joseph Burrascano is a leading lyme expert. Please read his paper titled " Advanced Topics in Lyme Disease-Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses", October 2008 (there are earlier versions online, but this one has the most up-to-date info) can be found at :

    Here is what Dr Burrascano says about the tetracycline antibiotics in that paper on page 14:

    "There are four types of antibiotics in general use for Bb treatment. The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate. For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300-600 mg daily) or by parenteral administration. Kill kenetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid (2 x a day) is more effective than 100 mg qid (4 x a day). Likewise, this is why IV doses of 400 mg once a day is more effective than any oral regimen."

    There is a ton of info in Dr Burrascano's paper...anyone with lyme or another tick borne illness must read it. He talks about 3 other types of antibiotics that are used also.

    Also, you must read the ILADS Guidelines found at :

    Ideally, you should find a LLMD (lyme literate MD). You can go to, click on "flash discussion", then click on "seeking a Doctor"....register your info including your email address for free.....then post a message stating "Looking for a LLMD near (put your city and state here)"......someone will email you a private message with Dr's closest to you.

    If it is impossible to get to one, then it is absolutely necessary to print out the above 2 papers from Dr Burrascano and ILADS and take them to your Dr, after you have read them. You must also be as educated as possible so that you will know if your treatment is appropriate.

    Then discuss the info with him and give it to him to read. Insist that he follow the guidelines from the Lyme experts.

    After all, you don't see Dr's writing papers called " Topics in Lyme Disease from Dr's who dabble in infectious disease"!!!!

    It is your health and you deserve the best and proper treatment. INSIST on it!!!!!!

    Let me know if I can help you any further. Good luck!
    [This Message was Edited on 01/09/2009]