Circulating spirochetes while on doxycycline?

Discussion in 'Lyme Disease Archives' started by bikology, Nov 2, 2007.

  1. bikology

    bikology New Member

    Has anyone had these? I've been diagnosed with CFS, but respond to doxy. However my symptoms return when I quit the doxy, so I am wondering if there is any possibility of circulating doxy resistant lyme, or if it would be encysted and checking for circulating spirpchetes would be useless.
  2. munch1958

    munch1958 Member

    I have the same problem. I feel good on Abx but worse when I stop them. Some say it's because some Abx can act on neurotransmitters. I don't believe that.

    Have you tried a cyst buster like Flagyl? If you do start with a tiny sliver.

    I'm currently doing heparin because I believe the Lyme hides in the excess fibrin of the blood. The "Healing Lyme" book by Stephen Harrod Buhner says the use of Lyme with Abx can cure the disease.
  3. Daisys

    Daisys Member

    It sounds like you're responding to doxy because you have an infection. Just my opinion, but I suggest finding a LLMD, a lyme literate MD to get tested.

    I was diagnosed with CFS, classic symptoms, and later with FM, also classic, but now it looks like lyme disese is causing all the symptoms.

    Doxy also affects mycoplasma, and other things, so you could have any number of infections.

    Some people say doxy doesn't actually kill the spirochetes, but prevents them from replicating. My LLMD has me on high dose doxy, and told me it definitely kills them outright.

    Hope you get answers soon.
  4. bikology

    bikology New Member

    I have an appt. with one at the end of the month, but after the insurance pays out of network benefits and travel costs it'll most likely still be about a grand.

    If I can find out if I have lyme before spending loads of money on the CFS doc (that's also familiar with lyme) that'd be great for my wallet. So if there's a chance of finding spirochetes in my blood I'll do that after work, but I'm so tired and over-extended as it is that I don't want to waste my time unless there's some chance of seeing something.
  5. victoria

    victoria New Member

    that's one reason why it's so hard to test for Lyme spirochetes. Flagyl should be prescribed, as it does break up the cyst form. you might try researching at ilads.org and also at lyme flash net; the more you know, the more able you'll be to make decisions when talking with doctors.

    It also helps to compare what the doctors are doing who are considered the best LLMDs, such as Dr. Joseph Burrascano (who's now retired, but he published some guidelines in 2005 online).

    hope that helps. The WB by IGenex is about $250 and about 70% reliable according to the CDC's "tracking/surveillance standards" - but your doc should be able to dx based on more than you meeting that standard, he should know what the different bands mean, take your 'clinical picture' into account etc.

    There are posts here and on the CF/FM board about how to read the WB, btw, so you'll be able to compare when you get your results.

    Hope that helps some... good luck. It's nice to get a dx, finally, but Lyme and the usual co-infections are very difficult to get rid of.

    All the best,
    Victoria

  6. bikology

    bikology New Member

    okay, I guess if it'd be in cyst form it'd not be worth looking for.

    I'm sure I'll be tested for it when I see the CFS doctor.
  7. cherylsue

    cherylsue Member

    If you order the test kit directly from Igenex, it is $190 which includes shipping. You just need a doctor to sign the order form, and find someone to draw and spin the blood. That my cost anywhere from 0-$25.

    CherylSue