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08/25/2008 08:56 AM

lyme test reliability

ktees1
ktees1Posts: 2
Member

Hello,

This is my first time posting. I am very concerned. One week ago I new nothing much about lyme disease, until my neorologist called and said I tested slightly possitive for lyme..I freaked out, I am almost 31 weeks pregnant with my fifth child. He referred me to an infectios disease specialist and I made an appointment for two days later. She told me that the elisa test was false possitive since the western blot came up with only one band it was considered negative. With all the research I have done in the last week, I've come to realize that no test can be 100%. If one can be false possitive than how can they be sure the other isn't false negative. I have had a lot of symptoms in the past, and I do remember having a rash last fall..again I knew nothing about lyme disease and just thought it was a heat rash. My ear has been hurting since January and I started to see floaters in my eyes at the same time. That is what brought be to the neurologist. He said we can do an MRI. I really want to know if I have this disease so I can get the proper treatment for myself and my baby.

Would appreciate any help!!!!!

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08/25/2008 09:05 AM
tomro62
tomro62  
Posts: 359
Member

Lyme disease is essentially a clinical diagnosis, but you are not going to get this from an infectious disease doctor, or any doctor that is part of the mainstream medical thought process.

There are Lyme Literate Doctors who are not afraid to give a clinical diagnosis, based on history, symptomology and testing by the most reliable labs...although none of them are 100% effective.

I know this sounds like "back alley" medical care, but it's not. If you can find an experienced Lyme Literate Doc (LLMD), then you have your best chance at receiving the treatment you need, if you have Lyme disease.

If you want to send a PM to me, and let me know where you are, I can help you find a doc.

Tom


08/25/2008 12:41 PM
jaime1978
jaime1978  
Posts: 2399
VIP Member
I'm an Advocate

You really need a lyme literate doctor to help you thru this. It can be tricky, the testing is not accurate at all, and espcially the tests a regular doc will give you. many say ID docs are the worst, that's not to say that they are all illiterate to lyme, but they do have a bad track record.

you can send a pm to me or any of the other group leaders, we'll be glad to help you thru this. Meanwhile keep reading and educate yourself like you've been doing. To me it sounds as though you've been infected for quite some time, and honestly most people don't even remember a rash or even get one, the fact that you did leads me to believe you need treatment.

Tom is right, this is a clinical diagnosis, meaning based on symptoms. PM any of us and we'll get you going in the right direction.

warmest regards,

jaime


08/25/2008 03:49 PM
ConnieD
ConnieD  
Posts: 808
Member

Hey there Ktees1,

Yes, find yourself an LLMD asap. Trust your instincts. Do the research and you'll see laboratory tests are not all that accurate. Like the others said, this disease is a clinical diagnosis. You have several symptoms.

keep us posted.

Peace and blessings,

Connie


08/27/2008 09:07 AM
pixey77
pixey77  
Posts: 24
Member

i have more of a question cause i had heard that someone that got treatment for lyme was pregnant and she took the antibiotic and the lyme ended up going to the baby so shouldnt she wait till after the baby is born to get treated if she has it since these things move anywhere to get away from antibiotics oh and check out some of the clips on you tube on the under our skin documentary
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