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[QUOTE=Sitlynne;2804679]Just drove past Middletown last night, have a friend who lives right beside the golf course and works there.

Test results are back, negative for lyme, she even had the Western Blot and the Elisa ran.

Thyroid and RA are normal range.

The only thing they found was the in my past sometime I had mono and was never treated, but I am not infected with mono now.

She talked of sending me to a rheumatogoly doc even tho it's normal, but thinking maybe that doc can figure it out or run more tests.

Then I told her I found a LLMD in Sunbury, about an hour from here. She did not know of this doctor but was going to try to reach him and ask him to see me even though I'm testing negative.

If not, then it's off to see the RA doc.

Thanks for the help.
I'm sure I'll be back here again, without this site I never would have been able to get as much accomplished as I did with her yesterday.

I'll give an update when I know something.

Forgot something, not surprising.
The doc had thought about just going ahead and treating me for 4 weeks with Doxy and I refused.
I'd rather try to see the LLMD first and go from there.

I also mentioned fibromayalgia to my doctor and neither of us think this is what I have.[/QUOTE]

If you can, find out which lab ran the Lymes tests and the banding results. Many labs use the outdated CDC surveilance criteria for Lymes (invented for their own tracking purposes, and the CDC even says on their website NOT to use these criteria for diagnosis of disease), and not the less restrictive criteria Igenex uses.

So if you doc simply says you are "negative", by CDC-criteria, you could quite easily still have Lymes. For example, I had a postive test CDC-positive initially. I was treated with the standard inadequate treatment 2 times, still had symptoms. 2 subsequent tests came back CDC-negative. My last 2 tests were 4-bands positive, but the idiot CDC positive requires 5. If you have even one Lyme specific band, you've been infected.

So according to many docs, even though those 4 bands are specific to Lymes, it's all in my head. By the way, proper treatment has made a massive difference in my progress with the disease.

I use a LLMD (Rheumatologist also) in MD who has made awesome progress with me. I've gone from about 70% function to maybe 90-95% under his care in 3 months or so. Private mail me for details if you want to. I live in PA in Hanover, near the MD border...

Interestingly enough, he said that about 70% of his patients who came in for RA/Lupus/MS had Lyme antibodies when they were tested. Scary isn't it?
[QUOTE=Bill S;2804731]If you can, find out which lab ran the Lymes tests and the banding results. Many labs use the outdated CDC surveilance criteria for Lymes (invented for their own tracking purposes, and the CDC even says on their website NOT to use these criteria for diagnosis of disease), and not the less restrictive criteria Igenex uses.

So if you doc simply says you are "negative", by CDC-criteria, you could quite easily still have Lymes. For example, I had a postive test CDC-positive initially. I was treated with the standard inadequate treatment 2 times, still had symptoms. 2 subsequent tests came back CDC-negative. My last 2 tests were 4-bands positive, but the idiot CDC positive requires 5. If you have even one Lyme specific band, you've been infected.

So according to many docs, even though those 4 bands are specific to Lymes, it's all in my head. By the way, proper treatment has made a massive difference in my progress with the disease.

I use a LLMD (Rheumatologist also) in MD who has made awesome progress with me. I've gone from about 70% function to maybe 90-95% under his care in 3 months or so. Private mail me for details if you want to. I live in PA in Hanover, near the MD border...

Interestingly enough, he said that about 70% of his patients who came in for RA/Lupus/MS had Lyme antibodies when they were tested. Scary isn't it?[/QUOTE]



I camp near Hanover in the summer. Where in Md is the LLMD?

The Rheumatologist my doc wants me to go to is at the Hershey Medical Center and the LLMD is in Sunbury/Bloomsburg but she's still trying to find out if he'll see me since I tested negative.

I wish I was even functioning at 70%, for me it's more like 30%.

Thanks for the info on the tests, I'm going to forward them to my doctor.





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