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Columbia NY Lyme Clinic

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Posted 12/15/2019 6:11 PM (GMT 0)
I posted this some time ago but hoping there are some new members who are able to help.

Wondering if anyone has been to the Columbia Lyme Clinic? If so, what was your experience?

Thank you
Posted 12/16/2019 3:32 AM (GMT 0)
Not familiar. Seeing that it's a flagship mainstream hospital, I personally wouldn't have high expectations.

But you never know.
Posted 12/16/2019 7:13 PM (GMT 0)
I believe they offer either a second opinion appointment or you can be part of their research program.
You can find all the info on their website.
Posted 12/16/2019 8:26 PM (GMT 0)
Thank you very much for the responses. I am familiar with who they are and what they do. Hoping to hear from someone who has been a patient there.
Posted 12/16/2019 10:55 PM (GMT 0)
Bump
Posted 1/6/2020 6:46 PM (GMT 0)
I had been there. It was not a good experience for me. They don’t believe in chronic Lyme there. I went there having been treated somewhat for Lyme. Came in with recent lab work that showed I was positive for Bartonella and have never been treated for it yet. I spent 5K for their brain testing plus more for blood tests. Her diagnosis was that I have Post Lyme. Have received enough treatment. That I should go on Lyrica for pain. Not one mention of my positive Bartonella test and what to do about it. Save your money and find a good LLMD. I just wasted money that I could have used for treatments.
Posted 1/6/2020 7:05 PM (GMT 0)
Inspiredby3, thank you for the response. I appreciate it.
Wondering if you have had CDC positive Lyme tests in the past? Did Columbia test you for Lyme? What was the outcome of those tests? Did they have anything to say about your cognitive testing?
I had an appointment with them recently but don't yet have test results. Will have a follow up appointment soon to learn test results, treatment recommendations, etc.
Really hoping I have a better experience than you did. Yes, it is a boat load of money, but I am at the point of not knowing where else to turn. I have been seeing an LLMD for the last almost 3 years and spent a ton of money there, too, but still have significant issues.
Thanks again! Hoping you are doing better.
Posted 1/7/2020 1:40 AM (GMT 0)
Mareish - are you in NY? Could you PM me and tell me which LLMD you have been seeing?

I read way back when someone else went to Columbia Lyme Clinic. Maybe if you type it in the search button you will find the old threads.....

Inspiredby3 - How are you???!!!!
Posted 1/7/2020 2:05 AM (GMT 0)
Chapelle, No, I am not in New York. Sorry, but I can't figure out how to message you. If my email is enabled, perhaps you could email me.
Posted 1/7/2020 2:32 AM (GMT 0)
ok - all you have to do is click on my name, chapelle, and my profile will pop up with my email listed. i will send you an email -
Posted 1/10/2020 6:09 PM (GMT 0)
Have just had my follow up appointment with Columbia and I highly recommend them.
I have been, like many of you, struggling/suffering for years. Columbia did comprehensive lab and neurocognitive testing and made treatment, etc recommendations based on the results.
One note … my Lyme test results have been all over the place the last couple of years. Ends up I tested positive for B Miyamotoi as well. Might be worth looking into if you've been in the same boat.
Posted 2/19/2020 11:24 PM (GMT 0)
Chapelle & Mareish - I live in Columbia County, NY. I'm pretty desperate to find an LLMD in NY state. If anyone has a recommendation and could email me, I would truly appreciate it.

My LLMD was out of state and now has retired. He under-treated me somewhat, so I'm still sick after long term oral ABs.

I appreciate any recommendation or advice on NY state LLMDs taking new patients. I've called several doctors who are not accepting new people and have long waiting lists.

If I find anyone, I would be happy to share that information also.

Thanks!

Chapelle said...
Mareish - are you in NY? Could you PM me and tell me which LLMD you have been seeing?

I read way back when someone else went to Columbia Lyme Clinic. Maybe if you type it in the search button you will find the old threads.....

Inspiredby3 - How are you???!!!!

Posted 2/20/2020 12:06 AM (GMT 0)
Auspiciousbunny - I have a list of LLMD's in New York. Send me an email if you like.

Are you looking for one in New York City?
Posted 2/21/2020 5:30 AM (GMT 0)
Mareish- glad going to Columbia has been a positive experience for you so far. I went about 5.5 years ago. Maybe they do things differently now or you met with a different Dr. than I did. I never got a CDC positive Lyme test. Just get some bands come up here and there. The Dr. at Columbia we’re the first to evaluate my latest blood work I brought in from my Dr. and for the first time Bartonella came back positive. She completely ignored that and didn’t recommend any treatment for it. Said I have post Lyme symptoms and wanted to pit me on Lyrica. Spent over 5K to have a BART infection ignored and just be put on pain meds.

I know chronic Lyme is more recognized now and maybe they changed their stand on it. They just put me in a hole and drained me financially and set me back big time treatment wise.

I even asked her how can I have post Lyme when I get such horrible herxes from treatment? She said she didn’t believe in herxing! Maybe it was just the Dr I had... but I was majorly pissed off that we wasted our time and money with this place.

Chapelle... Hi!! Hope you are still doing well! I’m still fighting to get better... almost 8 years of being sick... ☹️☹️
Posted 2/21/2020 2:31 PM (GMT 0)
Inspiredby3, Sounds like we must have seen different doctors. The one I saw warned me of herxes. Sorry you had such an unpleasant experience there.
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