I am really in need of help. A couple of years ago, I was experiencing symptoms like exhaustion and aches so I went to the doctor. I tested positive for lyme on the ELISA test. Doctor told me I had lyme. Soon after, I was told I do not have lyme because I tested negative on the Western blot. Since then, my health and overall well being has deteriorated dramatically - I now have joint and muscle aches, horrible digestion issues, extreme fatigue and no energy, I feel as if I have shortness of breath and can't project my voice as well, I'm always congested, and worst of all, I can't concentrate on my work because I have brain fog, my eyes feel strained and I can't focus as well.
I've gotten tested for everything else recently and turns out I'm very anemic. I live a healthy lifestyle for the most part, and I'm young.
The doctor was convinced I did not have lyme because I tested negative on the western blot - but I had a positive for lyme on the ELISA. I'm confused about what a positive ELISA for lyme indicates. I haven't taken a new lyme test since then.
In your experience, do you think I could still have lyme even though I got a negative western blot?? How likely is it? Everyone seems to think I do not have lyme and I'm "self diagnosing".. My ability to function is greatly diminishing and I'm so frustrated and worried that I'm ill and not getting the right treatment. Thank you
Posts: 6 | From Nj | Registered: Sep 2015
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I never had the ELISA test done. My very first test was the Western Blot and every band came back negative. Not one showed up.
I still had lots of symptoms and a known tick bite. Dr prescribed abx anyway for 90 days and we retested.
I then tested CDC+ on Western Blot.
Many do not show with a positive test result unfortunately. Lyme is a clinical diagnosis.
My suggestion would be to find a Lyme Literate Dr near you. If you post in "Seeking a Dr", someone
should be able to send you info on a Dr close by
Posts: 1408 | From Tx | Registered: Nov 2009
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
What lab did the WB?
I had a positive ELISA and negative Quest WB done by primary care doctor. So he gave me doxy for one month.
When I relapsed later and saw an LLMD I wpositi ve WB by Igenex.
I've been told if you get a positive ELISA you're fortunate because it confirms lyme.
Seems strange your MD is ignoring it.
Posts: 1297 | From USA | Registered: Dec 2002
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quote:Originally posted by Kate8989: In your experience, do you think I could still have lyme even though I got a negative western blot?? How likely is it?
- YES, yes, yes! .. and very likely.
Most doctors do NOT want to diagnose Lyme because then they will have to treat it.
You can take a positive ELISA to the bank. They are known for their false NEGATIVES, not positives.
Get to an LLMD right away. You can find one by posting in Seeking a Doctor here. That doctor can test you through Igenex Lab, which is more likely to find the Lyme.
Lyme is also a clinical diagnosis... going by testing ONLY is not wise.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
o good lord, why does this happen????
yes, you should think of yourself as having tick disease.
go to a real dr that can think for him/herself. stay away from large group practice drs because they rarely know one thing about tick diseases.
if you are near PA and can't find anyone near you let me know and I can give you some names of good drs that can help you in PA.
- hope you find what you need
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this,click on the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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