Does anyone know of any other labs besides Igenex and Stonybrook that test for all bands? This is my opportunity to truly show my neuro what may be going on.
She actually told me she believes in Chronic Lyme, but that is it overdiagnosed. She then proceeded to tell me that I should follow up with a Dr. K who is a specialist in Lyme. I almost fell out of my chair. Either way, I want to have my bloodwork done anywhere besides Labcorp or Quest. I had Stonybrook done last year and was borderline. Now my insurance doesn't accept them.
Thanks in advance for any info.
Posted by Keebler (Member # 12673) on :
- Run, don't walk from that neurologist.
Yes, there are things besides lyme even for those with lyme.
However, if a neurologist is not very well educated about lyme - and all tick-borne -- and all stealth infections then how in the world can they really be an adequate doctor in distinguishing what is what?
"Overdiagnosed?" And just how has she determined that?
If you have to convince her, she is not well enough educated for you. Besides, even if you convince her, she's not well enough educated about lyme to treat you.
Their idea of a "specialist" is not always really one. Not every Dr. K is THE Dr. K, thousands of miles from your shores. At least one "Dr. K" who says he is a lyme specialist is with the IDSA and thinks lyme is easily treated.
There can be many who are "Dr. K"
Unless you know in all certainly that this one is ILADS-educated and a true LLMD, it sounds like you are being handed off to someone she knows will dismiss your case.
You likely do not need another Western Blot. Chronic lyme just cannot be tested as we think. How you know you are better is that you will start to be better.
Have you also been assessed for possible coinfections? Has liver support been consistent?
You need a knowledgeable doctor. Find an ILADS-educated doctor who can help you solve the puzzle.
Even if you can't get to a LLMD, it's usually detrimental for us to try to convince ANY doctor of ANYthing. It's not how they tick. -
Posted by Keebler (Member # 12673) on :
Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.
Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
Excerpt:
. . . Conclusion
Antibiotics have varying effects on the different morphological forms of B. burgdorferi.
Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease. -
Posted by Lymetoo (Member # 743) on :
I don't think Stonybrook tests for all bands.
Posted by tonysgirl (Member # 11202) on :
Thanks for your input. I think I may have given you the wrong impression about the Neuro. She gave me a specific name (for which I did not want to mention here) who is an LLMD. The neuro told me that I might want to see this doctor because she is a "Lyme Specialist" and was a brilliant doc. That was worth a million bucks.
I did mention to the Neuro that I did see this doctor and she had treated me in the past. She referred me to the neuro to rule out MS as best we can because I am having symptoms now I did not have earlier on. I am just grateful that this particular neuro is acknowledging my doc with respect and she actually did believe in chronic lyme. As far as the overdiagnosed part, yeah, she could have left that out but overall, I was not expecting to hear that she believed in chronic lyme at all.
Posted by tonysgirl (Member # 11202) on :
Yes Lymetoo, Stonybrook does test for all bands if the doc requests it. I had that back in 2010, but my insurance now doesn't cover them.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by tonysgirl: Yes Lymetoo, Stonybrook does test for all bands if the doc requests it.