i am almost embarrassed to ask this, but i initially went to the doctor b/c of chronic fatigue, but not joint pain. i got diagnosed with lymes and was put on a 3 week period of doxy 200mg a day. 1/2 way through the doxy i started to get pains in my shoulders and chest. as the days went on i noticed i had pains in my hips, elbows and knees. im now almost 2 weeks over my 3 weeks doxy period. the pains dont last longer than an hour, and usually go away. is it possible the medication made me worse? i hope i dont sound insane here. am i going nuts?
Posted by Michelle M (Member # 7200) on :
Hi BigRig.
That's about half the dose you NEED. Find another doc, unless you want to feel that way for a long time!!
It sounds like you're experiencing what is called a "Herxheimer" reaction. That happens when you kill lyme bacteria. They release yucky toxins, which flood your system and make you feel (temporarily) worse. Most people experience that. It tells you that you're on the right track.
Unfortunately, many people (and doctors, too) mistake it for thinking they're "allergic" to the meds, or the meds aren't "working," and immediately stop taking the meds because it made them feel worse.
So now you know, the meds are actually helping.
However, 400 mg a day would be better. Unless you are a teensy-tiny guy.
PLEASE find an LLMD in your area. Get on a real treatment plan to eradicate this stuff so you don't become chronic. Find out what coinfections, if any, you have -- you won't get better if you have babesia, bartonella, etc -- and some odds are that up to two thirds of lyme patients have one or more. Browse through the Newbie Links (pasted up top of this forum) so you'll know what to expect as you go through treatment.
Good luck!!
Michelle
Posted by adamm (Member # 11910) on :
No one's ever beaten Lyme disseminated Lymewith that course of doxy. Read Burrascano's guidelines, find an ILADS LLMD, and start getting better.
[ 28. September 2008, 02:53 PM: Message edited by: adamm ]
Posted by bejoy (Member # 11129) on :
Yes, the guidelines suggest 500mg a day. You need to see a specialist to get better. Regular doctors follow outdated guidelines that don't work.
Have you posted in the looking for a doctor section?
Your symptoms could mean either that you are getting worse, or that you are having "herx" symptoms from toxins from the organisms dying off.
Don't be afraid to ask any questions here. We'll help as we can.
Posted by Keebler (Member # 12673) on :
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Yes, treatment can make a patient feel awful. That seems contrary to most other illnesses, but lyme is full of contradictions - just one reason why most doctors run from it.
Good that your doctor had open eyes . . . still, you may need to find a specialist or ask your doctor of the plan after this first short course. Many months is the usual with a combination / rotation treatment.
I assume your doctor discussed good health habits and has some sort of liver and endocrine support as part of your protocol. The Singleton book - all the way down - is your best source.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease