posted
Anyone out there have lyme for a while without a diagnosis that I can compare symptoms with. I'm going to my dr. to get the lyme test results on Monday. I have severe joint pain, fatigue, headaches, dizziness, nausea, problems remembering things, my hands arms, and feet fall asleep, and just a general all around I feel like crap feeling!
i tested negaive 7 times over 2 years and had all of those symptoms. Find a LLMD who can make a judgement based on symptoms and not tests.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Dawnee
Unregistered
posted
I have had all those symptoms (and a LOT more) LLMD thinks I've had Lyme for 20 years based on symptoms and history..but I know for a fact I've had it for 5 years at least (re-infected..wish rash)
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posted
I went to 11 doctors and went 5 months without a diagnosis.
Posts: 158 | From Santa Monica | Registered: May 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I can't type much now, but the information below might be of help. I really hope you have time to read, especially, the Savely article before your appointment and consult Igenex' site about the different tests.
And . . . a assume you are using NO artificial sweeteners or MSG. Even a trace of aspartame/nutrasweet/Equal can cause serious neurological symptoms. Same with MSG for some people.
Good luck.
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You might download this and take it with you when you get your test results:
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.
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Sadly, a glimpse into the state of treatment with IDSA doctors:
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
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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A good LLMD - after considering tick-borne infections (TBD) may go further to look at this, too.
If you doctor says "no" to lyme, you may need a LLMD for further assessment and/or you might consider that other chronic stealth infections can be quite troublesome and cause similar symptoms, too.
I'd just sort of keep this list in your back pocket, so to speak. TBD are the first to assess, but if your current doctor says "nothing is wrong" you will know that even if not lyme / TBD, you need further evaluation.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
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If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
Same here. all those symptoms and many more. It took me 18 Doctors and 20 years or longer and really probably a lot longer before I was finally diagnosed.
I take it a day at a time and just keep treating.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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