posted
A physician ordered a Lyme test on me last year. The lab did not follow-up with the Western Blot showing the bands because their one antibody test showed negative.
This was done by Quest Diagnostics. It did not even show how many, if any, antibodies showed up on the test results. All it showed was <0.90 = Negative, or something like that.
Has this happened to anyone else on this forum who have found out later that they actually had Lyme?
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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posted
My elisa was negative, My first western blot was negative, after 3 mos on doxy my WB was + 41 kda band, not CDC + but I had no other reason to show this except for the tick bite 2 yrs earlier. So for me the tick bite along with my symptoms was enough to begin treating. My symptoms were 85% better after those 90 days on doxy, not gone but on the right path. Now I am treating Bart and Babesia, and was able to spot both of these on 2 successive blood smears that I did. So I did not have 1 tick borne disease but 3.
Hope you find a good LLMD soon to help you with your recovery -- get started so you can get better.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
Thank you. I think I have found a good LLMD - doing the Lyme test Monday through Igenix.
It was a prior doctor - a physiatrist in Kansas City, who did the bad Lyme testing. Because the test just said AB was 0.90 = negative he didn't bother ordering the WB nor even find out how many antibodies even showed up on the test. It could have been 0.89 and he wouldn't have know to order the WB - but he didn't bother to find out. I don't think that lab reports how many antobodies they find anyway.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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massman
Unregistered
posted
LYME TESTS DO NOT TELL YOU IF YOU HAVE LYME.
So many posts + threads here asking the SAME QUESTION.
Lyme is a CLINICAL DIAGNOSIS. NO body fluid tests - NONE !
THIS IS ONE OF THE VERY FIRST THINGS TO LEARN ABOUT LYME !
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Yes-many posts do ask this same question and many posts do answer the same question. But when you are new here maybe you don't know how to use the search function or don't see any posts about it. Many people new here seem like they are just starting to learn about Lyme.
And I am a person who wanted a blood test. I got one and now I am happy with it. Some people like proof even if the chance is low that Lyme disease tests will offer it. Some people don't know how unreliable the tests are when they are first diving into lyme.
Nana-as the previous posters said the lyme tests in the mainstream are notoriously unreliable. Igenex is better definitely but sometimes people still get a negative test from Igenex.
Your new LLMD should be able to answer your questions and should also be able to diagnose you without tests. Since lyme is a clinical diagnosis-much like fibromyalgia (which I guess is why so many Lyme patients get misdiagnosed as such). Your LLMD may use the tests in conjunction with a clinical diagnosis but definitely not in place of. If the LLMD only treats based on test results find a new LLMD before wasting any more money.
Good luck to you and I know finding out you do or might have lyme is scary.
posted
The ELISA test haven't been validated for illness which have lasted more then 6 months.
And the validation for the test when it comes to stage I and stage II of the illness isn't that water proof...
Posts: 275 | From Home | Registered: May 2007
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posted
Thanks for all of your input. I am having the Lyme test from Igenex to begin with. There is only one LLMD here, it seems, unless you want to drive a long way and end up paying totally out of pocket. I can't afford that since there are two of us in the household in the same boat.
I am hoping my LLMD will help us through this maze. In the mean time, I am reading here and learning all I can. I do get confused, though. I have been dx with CFS & Fibromyalgia, and my LLMD told me that it's highly likely it's either Lyme, XMRV virus, or both.
How can a person tell the difference as to whether it's Lyme or CFS/Fibromyalgia?
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Get tested for lots of pathogens, Lyme, other tick borne infections, EBV, HHV-6 enterovirus, Cpn, etc. Treat what looks to be most obviously wrong.
posted
Had EBV, HHV-6 & Mono tests. All negative except the antibodies showed high on EBV - yet the doctor said I didn't have it now but had it in the past.
I gave a copy of this to my new LLMD. He wasn't available so I told the nurse to have him get back to me if there was anything on there I should be worried about.
Thanks for the links. I will check these out.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
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