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Help with western blot Lyme with pulmonary fibrosis, liver

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Posted 7/18/2014 6:34 PM (GMT 0)
I grew up outside of Lyme ct in Brookfield and got quite sick there with a throat infection that did not respond to penicillin. I climbed trees and roamed outside so much that tick bites were common and redness from them would be no big deal since no one knew about Lyme.

I got a western blot a few years ago and the results just said negative. No igg or igm listed, just one line negative. Does this mean I can't possibly have chronic Lyme?

I am currently pretty ill with current diagnosis as secondary sjogrens among other things. My friend has the same problems and went on six months of oral pred and doxy and got completely well. I told the docs this feels like an infection.

I am running out of time due to my lungs. I am hoping to find a doc that can help to diagnose.
Posted 7/18/2014 7:21 PM (GMT 0)
It doesn't sound like you were tested through Igenex lab. Igenex is the best place to get tested for Lyme Disease.
I would recommend that you do that - get a Western Blot done. Also, find yourself a LLMD to help you.
Posted 7/22/2014 3:40 AM (GMT 0)
I was not positive for the sjogrens auto antibodies either. They are calling it secondary sjogrens. I definitely have sjogrens, or something just like it. I've been getting steadily worse, I have pulmonary fibrosis with for pulmonale. I have seen that many people with pulmonary fibrosis have tested positive in the past for Lyme. Yes I need to get a LLMD Asap!
Posted 7/22/2014 10:15 AM (GMT 0)
I'm sorry to hear all you're going through.

I read recently that if a person is infected and is giving any anti-biotics, if/when they test later in life, they will test neg, esp using all the tests that are not from IGeneX.

I read that if infected, and then treated, things change in our system, and we will not test positive, and surely not using the CDC 'okayed' labs/testing.

I wanted to let you know. I was treated with a short term antibiotic when I was infected, or when my L was flairing, but I didn't know I had been infected earlier in life. I now do not test positive any every test done, except from the IGeneX labs!

I read about this occurence while reading, "Cure Unknown."
Posted 7/22/2014 7:19 PM (GMT 0)
Try not to take the lyme tests too seriously. I tested negative 3 times before testing positive. And I had the physician confirmed EM rash with deer tick bite so...it does happen and is not uncommon at all to test negative.

I agree with what many of the others have said on here about finding a lyme literate physician. You can start a new thread "Looking for LLMD in _________" and also contact ILADs or a local lyme support group for referrals.


~beth
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