Re: two drs discuss lyme, very similar symptoms to CFIDS

May 17, 2012

While lyme disease do share many similarities with CFS/ME, most CFS specialists

who test for lyme say that more than 90% do not test for or have lyme. There are

also key symptoms that can differentiate chronic lyme disease from CFS/ME.

May 17, 2012

What are the symptoms you refer to , Larry?

There is much disagreement on the lyme tests, the proper tests needs to be used.

this could contribute to you 90% figure. One should get a lyme literate dr

through ILADs and get the proper tests. Most cfids and ID docs dont use these

tests.

>

> While lyme disease do share many similarities with CFS/ME, most CFS

specialists who test for lyme say that more than 90% do not test for or have

lyme. There are also key symptoms that can differentiate chronic lyme disease

from CFS/ME.

>

May 20, 2012

This is a sore point with me. I was tested by two of the top CFS docs

(infectious disease) and they did not think I had it. One fired me for taking

antibiotics for a sinus infections while on valcyte. Valcyte made me very prone

to bacterial infections, and though it helped CMV a lot, it gave a big advantage

to bacteria.

Other doctors told me I didn't have it based on how I looked. Doctors have told

me lots of things that have turned out to be incorrect. Such as " You'll never

get better if you don't exercise. " And " you have no autoimmune disease. " And

" Your cortisol is normal. "

Most of us have been told wrong things by doctors. I resisted the idea of Lyme

for a long time, because I just didn't want to have it. Now it's disseminated

and I live in pain.

If people can afford it, they might get a darkfield microscope exam and then

look at youtube videos for the various forms of Lyme, babesia and other

co-infections. Sure wish I had done that. I was seeing the bugs for years.

It's very possible to be sero-negative. The CDC website says as much. Lyme

bacteria prefer the tissues. And they can be anywhere and everywhere.

I'm not trying to start an argument. I don't know what anyone else has. I just

wish there were better tests and no politics around treatment.

/Kolowesi 14 years and counting

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