Was checking the website for info to request test kits for hubby's upcoming endoscopy.
Called the lab -- Test #430 Borrellia Lonestari (Southern Lyme Disease) by Real-Time PCR Test has been available for about a month now. Cost is $130 if lab submits to insurance directly or $78 if patient pays upfront and submits to insurance themselves.
Has anyone had the test done yet? If so, has anyone tested positive?
Bea Seibert
Posted by LYMESCIENCE (Member # 9259) on :
Super interesting. No, I've not known about it.
Before treatment, I had participated in a clinical trial for people with CAEBV. I didn't have this disease, I had lyme, but they took a significant amount of blood. I wonder if I can speak to the researcher, as they said on the concent form that the blood would be stored for a long time, if some of this blood can be tested for Borrelia Lonestari.
Great find!
Posted by seibertneurolyme (Member # 6416) on :
The lab director, Dr Richard Tilton called me back. In general PCR from blood is usually positive for Lyme disease only 4 - 6% of the time. However, PCR from biopsy of rash may be positive for Lyme disease up to 75% of the time.
Mentioned that if you took 35 blood specimans from the same person that the odds of a positive PCR would increase to around 50%. Doesn't sound too promising to get a positive PCR from a stomach biopsy, but we will probably send at least a couple of biopsy samples for Lyme.
Undecided at this time whether to also test for borrelia lonestari. The lab director couldn't give any stats yet as the test is so new.
Bea Seibert
Posted by lymex5&counting (Member # 7202) on :
Great find, Bea!
I am going to see about getting this test added. MDL should have received blood from my 4 kids today.
If I get it done I will let you know,
Lyme x 9
Posted by elle (Member # 7721) on :
Does a pcr for lyme require the same time off abx as for a pcr for mycoplasma?
I don't see any information listed on the MDL site for the new test or the other pcrs.
One of my 10yo twins was bit in May (this year) by a lone star tick. She was already taking abx and flagyl when she was bit.
elle
Posted by lymex5&counting (Member # 7202) on :
All 4 tested, all 4 Negative for stari according
to test.
Posted by bettyg (Member # 6147) on :
lyme science, what is CAEBV? thanks!
Bea, I think you or someone else posted about this when it occurred. Thanks for the update to us all.
Hubby, good luck on your endoscopy. I've had 2. What are they looking for? Mine found some "mysterious" thing, so I redid endo 6 mo. later. When I had a non-related surgery for colon polyp where they took my apendix, I had them check that area. All they found was "FAT"! Bettyg
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