Can't tell you how much info I've gotten from your website, it's great.
Thanks to all for your input.
I got an appt with a llmd, a cancellation for next week.
Have to say I'm discouraged though. Seems every complaint I've had for the past 15 years is related to this miserable disease.
I feel crappy, I feel like no md has taken me seriously and I'm mad because I've lost so much time.
I just hope when I go to the new dr next week I have my act together and can convince him of neuro lyme.
Anyway, venting, I'll try to be more positive going forward. Just can't believe I let them all talk me into things I knew I didn't have.... Feel better -
welcome to the "you've been diagnosed with 1 of the 300 other illnesses mimicking lyme disease"!!
when i was correctly diagnosed after 40-50 drs. misdiagnosing me, i didn't know then there were 300 other illnesses overlapping LYME. that helped to calm me down.
i too believed every drs. diagnosis, etc.
now you have a place to learn from and to educate drs. too, and get much needed MORAL SUPPORT. best wishes.
this link, making the most of your LLMD visit, may help you also.
make sure you have your most important things you want discussed at TOP of your list instead of at the bottom ok! best wishes; glad you got in so EARLY!
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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.
the Lymebrary; and the NEWBIE threads - one by Betty G and one by TreePatrol - contain lots more good information.
I think, though, that you can pretty well relax if you are going to a seasoned LLMD. Think more in terms of conveying what is going on rather than attaching a name/diagnosis to it.
There are several tick-borne infections and some overlap. Others have distinct features. A good doctor can tell from your report - or even an inability to talk much - which way to go.
BettyG's link to making the most of your visit has great suggestions. Then - just be yourself.
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