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Posted 1/16/2019 5:01 PM (GMT 0)
Wondering if anyone has recent experience with the Columbia Lyme Center in New York? If so, was it helpful/productive or a waste of time and money?
Posted 1/16/2019 6:23 PM (GMT 0)
The few patient testimonials I've seen seem to say it was a waste of time/money. Might be better off trying to connect with an llmd in the northeast if you can, it can be hit or miss but there are some good ones out there. Sometimes doctors in these academic institutions have their hands a bit more tied when it comes to their ability to treat the infections. I'm guessing they have to hew more closely to the conventional treatment guidelines and treat more conservatively.
Posted 1/16/2019 6:32 PM (GMT 0)
Thank you, sebreg. Appreciate it.
Posted 1/16/2019 6:32 PM (GMT 0)
i didn't go to the center, but i went to a doc affiliated with the center. very knowledgeable, but yes she was conservative with treatment length. the protocols were good in my opinion, and i benefited, had i stuck around i surely would have slid back.
Posted 1/16/2019 6:37 PM (GMT 0)
sierraDon, Thanks for the info. Are you saying if you had stuck with her you would have become worse? Sorry, I'm not sure I understand the meaning of your last sentence.
Thanks again!
Posted 1/16/2019 6:43 PM (GMT 0)
i believe so, she only believes in shorter treatment duration. for example, bartonella usually requires treatment for a while, like 6 months or more until majority of symptoms resolve. some say 2 months on that top that. she only wanted to do 3 months while i still had symptoms.

she is very good with diagnosis, very personable, and treats other supportive issues like (yeast, sleep, pain, etc.) its just the treatment length that is concerning. this maybe a non-issue for someone with a recent infection, but i had concerns with it given i am chronic.
Posted 1/16/2019 6:45 PM (GMT 0)
Yeah, I think that's what sierraDon was saying, that they wouldn't have been able to treat beyond a certain amount of time which would have eventually led to relapse. I don't doubt there are some great practitioners and researchers in these institutions, it's just the institutional oversight probably doesn't allow for them to stray too far from the conventional guidelines (especially treatment length) without risking their jobs/getting reprimanded. I'd imagine for less severe cases and cases that were caught early they might be a good place to go, but if you require extensive treatment not the best option.
Posted 1/16/2019 6:51 PM (GMT 0)
Got it sierraDon and sebreg. My infection is many years old unfortunately. I'm at the point where I am kind of doubting the testing and treatment I've been receiving from a LLMD in San Francisco and am hoping to find another opinion/avenue.
I just want this stuff gone and am grasping at straws!
Posted 1/16/2019 6:59 PM (GMT 0)
Have you seen any improvement with the treatments? Sometimes it requires looking at or trying new angles. Sometimes certain coinfections are overlooked, but also can be other issues like metals/mercury, parasites, viruses, mold, SIBO, thyroid, MCAS, etc. Might want to check out Dr Neil Nathan's book Toxic, I've heard it's good and seems like a good resource that can help give us ideas for different angles to look at. I've also heard Dr SH out in that area is quite good, Sheeks went to see him.

What kind of symptoms are you dealing with?
Posted 1/17/2019 3:11 AM (GMT 0)
sebreg, yes, I had tremendous improvement while on antibiotics for a year. Had to stop antibiotics last April because of an unrelated health issue. Last fall, symptoms crept and then came roaring back. Now on Tinidazole and Bioxin for the last month. Worst 2 week herx ever at the start. I've had all other testing done and all results were a okay.

Thanks for the book recommendation.

Symptoms run the gamut … head/neck ache, mild joint pain, ears, bladder, word retrieval, fatigue, insomnia, etc, etc.

Really appreciate your help.
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