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» LymeNet Flash » Questions and Discussion » Medical Questions » New to all this Lyme stuff

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Author Topic: New to all this Lyme stuff
mattrv197
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Two weeks ago my PCP said I have Lyme (after 1 year of undiagnost symptoms, many drs visits, etc.) He put me on Doxy for a month.

Today I saw a rheumatologist who reviewed my Lyme test and said the Western Blot was negative. I've been reading a lot about it and don't know what to think.

It definitly seems to me I have Lyme, over the past year I've had: constant headaches, dizziness, muscle aches, muscle spasms, fatigue, fatigue and more fatigue, visual problems, neck pain.

No other disease fits the bill better than Lyme - none... PLEASE HELP!

Posts: 5 | From Pittsburgh, Pa | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
TF
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If the rheumy told you your diagnosis is fibromyalgia, then the rheumy doesn't know anything.

Fibro is caused by lyme disease. Lyme doctors know this. (Just ask the rheumy what causes fibro, and the answer will be "We don't know"!!! Yep, they don't know.)

Stick with the doc who told you you have lyme. Drop the rheumy. Rheumies are usually bad news for lyme patients.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
droid1226
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What did your Western Blot say exactly? Sure sounds like lyme. Rheumatologists are useless when it comes to lyme. You also need a co-infection panel as it definitely sounds like you have lyme.

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http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

Posts: 1181 | From ohio | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
TF
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This is a post by a lyme doctor. It explains the Western Blot results:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/42077?

Get a copy of your Western Blot results and post them here. Post each band listed and what it shows next to each band.

We will help you interpret your results. However, as the lyme doctor says in the post above, if you have even one positive band on the Western Blot, and you have lyme symptoms, then the test result is significant--it is confirming that your body is reacting to lyme bacteria.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
There are VERY few lyme literate rheumatologists in the U.S. Yours is obviously not lyme literate.

Even if your Western Blot might be negative (but that is not yet proven as CDC negative determination is not the same thing as negative test) that cannot prove the absence of lyme.

See the "27 Reasons" post in the next link.

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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.

==================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation.

===================

Doxycyline (or many other antibiotics) can cause lyme to go into the "cyst" form within 20 minutes of taking the first dose.

Antibiotics are not effective against this form of lyme and it can go into "hiding" and come back later as chronic lyme, harder to treat.

For that reason, many LLMDs also use what is called a "cyst-buster" Rx such as Flagyl:

Re: Flagyl / Tinidazole

http://www.ncbi.nlm.nih.gov/pubmed/21753890

Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.

Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.

Excerpt:

. . . Conclusion

Antibiotics have varying effects on the different morphological forms of B. burgdorferi.

Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.

=========================

Liver support & Adrenal support is also very important before and all during treatment. Most LLMDs are well aware of those methods.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
mattrv197
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Thank you all. I will provide details as soon as I get them.
Posts: 5 | From Pittsburgh, Pa | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
   

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