posted
I was diagnosed around april, took doxycylcine
for 2 weeks, got off it then went to the doctors
and got tested they told me the disease was
negative I said good.. I went on vacation in
florida this is about 3 months after being
diagnosed, I was having trouble hearing plus a
stiff neck I went to go get retested and the
doctor down there told me i was positive...So I
took the doxy for 3 weeks, I went back home to NJ
and the doctor tested me on my 2nd week of meds
and told me I was negative.. 2 days after I
finished my meds I started feeling weird,like
dizzy or something, my hearing feels muffled and
I dont know if it was in my head but it felt like
my eyes where spinning..what does this mean??
Does the disease come back and pop up again? Im
pretty scared right now.. some help please? and
another question does the symptoms take a while
to clear up or what?
Posts: 8 | From NJ | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You need to find a lyme expert. Sadly, this happens quite often. You did not receive proper treatment and you likely will not be able to do so from your current doctor.
What kind of tests? (Get copies of all of those for your personal file.)
What lab?
Did you ever have a bulls eye rash? Not everyone does, but if you had the rash no testing for lyme is needed. Co-infections, though, need to be checked.
Many links to articles below. This is just the tip to what patients need to protect themselves from doctors who don't treat properly.
BTW, lyme can't be tested after a few weeks' treatment. The test will not be accurate. Savely addresses that below.
I'm am really sorry that you've had to go through this.
Sorry to toss what equals a grad level semester's work. The more you learn, the better chance you have for a healthy future. Still, this is no easy task.
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.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
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
suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It is highly probable you were not cured. The load of the infection was reduced to a level in which symptoms were resolved, but the infection gradually gained its footing and symptoms returned.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
The doc obviously doesn't know the more recent treatment protocols or he'd have given you a higher dose for much longer, PLUS a cyst-buster antibiotic (Flagyl or Tindmax - I had Tindamax and it had few side effects).
I had the same inadequate 200mg Doxy/3 weeks crap TWICE, and was still quite sick. Took a long time to find a doc who knew what he was doing. I was sick for over 3 years.
You need to find a LLMD asap.
Posts: 131 | From PA | Registered: Aug 2007
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