HealingWell
Search Close Search
☰

Columbia University - Lyme and Tick-Borne Disease Research Center - Opinions?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/1/2015 11:29 PM (GMT 0)
After a year+ wait (they're apparently backed up), I finally got an appointment for testing and a customized treatment plan from Columbia University's Lyme and Tick-Borne Disease Research Center. Here's the website: http://www.columbia-lyme.org/patients/second_opinions.html

They spend two days (about 5-6 hours each) where a team of doctors/specialists just focus on you - first day is neurological testing and the second day is clinical I think. Unfortunately, they don't take insurance and the two day visit costs $5100 (not including lab testing)!

I saw that another member on the forums didn't have a great experience with them. I'm trying to figure out if that is more of the exception or the norm with them, given the high cost. Does anyone else have experience with them?

(Most of my symptoms are neurological - memory problems, brain fog, concentration issues, fatigue, etc. I'm seeing a Lyme specialist now - Dr. R. in nyc - he's very nice, seems very knowledgeable, but his office visits are very costly, I haven't had any real improvement, and he's a bit old-school so maybe not on the cutting edge).

Post Edited By Moderator (Traveler) : 9/1/2015 5:56:08 PM (GMT-6)

Posted 9/1/2015 11:59 PM (GMT 0)
Hi Kbsk,
I wanted to let you know why I edited your post, we don't allow doctors names to be posted for a number of reasons, two of them being that Admin has requested this and we want to protect our doctors from persecution.

Personally, I would say that that's a whole lot of money that could be spent on treatment rather than more testing. And why would you want more testing - I'm not clear on this since you are already in treatment for these infections. What do you expect/hope they will find/do?

Now, I don't have any experience with them, I only read their articles, and those I like most of the time, but that doesn't mean that testing those that already have a diagnosis or are already in treatment is something I agree with.
Posted 9/2/2015 2:24 PM (GMT 0)
kbsk224, I don't know anything about them, but I am just hesitant and stay away from any big medical center or boards, because they are the doctors that have steered me so wrong in the past. Dr. R has a great reputation and I'm sure he will help you. How long have you been with him?

My concern with Columbia is that I am SURE they won't do anything too drastic from what the CDC thinks, since they are so in the public eye.
Posted 9/2/2015 2:57 PM (GMT 0)
Traveler - that policy for using names publicly makes sense, will keep it in mind next time.

I guess I wanted testing from these guys b/c they're a dedicated Lyme research arm of a very well respected school, so I figure they would have cutting edge diagnostics to help customize a more effective treatment plan tailored to my issues (since I don't feel like I'm making progress with the treatment I've received already, and b/c a big part of their testing focuses on neurological assessment/issues - so hopefully I can get a more objective understanding of where I stand with my problems). But I'm not really basing that hope on anything, so I wanted to get some feedback from people.

Sarah - I really like Dr. R as well, I just haven't been having much luck with his treatment over the last year.
Posted 9/2/2015 3:09 PM (GMT 0)
"dedicated Lyme research arm of a very well respected school, so I figure they would have cutting edge diagnostics to help customize a more effective treatment plan tailored to my issues "

Unfortunately I don't think that is actually true. Again, not that I've been there, but I don't know any Lymie who has. Ijust think if they were so great we would have heard more.

Also unfortunately, sometimes it takes time. I've also been treating for over a year and haven't seen much improvement. I just don't want you to give up on him! I can recommend you to my LLMD, also in the city, but I don't know if they'll do anything different than he's doing.
Posted 9/2/2015 3:13 PM (GMT 0)
Actually I just took a further look at their website, and something I read makes me want to tell you to stay away, kbsk224.

They use the term "Post-Treatment Lyme" YOU MEAN CHRONIC LYME? Sorry for caps lock but that's absurd.
http://www.columbia-lyme.org/research/cr_research.html

They also cite the IDSA (ie, the bad guys) here

http://www.columbia-lyme.org/patients/controversies.html

 

Posted 9/2/2015 5:55 PM (GMT 0)
Agreeing with Sarah!!! Anytime the phrase "Post Treatment Lyme" is used, that means they side with the IDSA and CDC on almost everything.

As I said, they do have some good articles and information, but I surely wouldn't put my health in their hands.
Posted 9/2/2015 6:27 PM (GMT 0)
Thanks for your comments Sarah and Traveler. But it looks like they're at least a little better than that.

sarahm620 said...
They also cite the IDSA (ie, the bad guys) here
http://www.columbia-lyme.org/patients/controversies.html


That webpage seems to be criticizing the CDC/ISDA. E.g.:

Columbia Univ. said...
"The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease;


----

sarahm620 said...
They use the term "Post-Treatment Lyme" YOU MEAN CHRONIC LYME? Sorry for caps lock but that's absurd.
http://www.columbia-lyme.org/research/cr_research.html


I don't really think using the term "Post-Treatment Lyme" for academic publications is a bad thing (since it still describes the problem, Lyme persisting after treatment), and especially given the negative connotation (whether or not justified) in the medical community to the phrase "chronic lyme." Also, from the rest of their site, I think they clearly believe in chronic lyme:

Columbia Univ. said...
The establishment of this Center is the first step toward ensuring that leading researchers at one of the foremost academic research centers in the world are given the resources to focus their research efforts on unraveling the mysteries of chronic Lyme disease. http://www.columbia-lyme.org/research/lymetbd_center.html

Posted 9/2/2015 6:33 PM (GMT 0)
I'm just trying to save you from wasting your $5,000. That's all.
Posted 9/2/2015 7:37 PM (GMT 0)
Yet still you already have a diagnosis - so what can they truly do for you for $5,000???? They may confirm Lyme or they may decide that you don't have enough bands or the "right symptoms" to have Lyme - and they almost certainly don't believe in the power of detoxing or of herbs in aiding the healing process.

"we offer a second opinion evaluation service for patients who have persistent neurologic or neuropsychiatric symptoms that have been attributed to a tick-borne illness."

That statement above is kind of funny, since "persistent neurologic or neuropsychiatric symptoms" signal that the person has not had enough treatment. It's really that simple.

If you really feel you need a second opinion that you have Lyme, then sure - go have them take a look, but I would think you could easily find less expensive ways to get a second opinion. They really can't run any more tests than any other doctors can.

I just hate seeing people keep testing as it's expensive and it won't change what you need to do for treatments.
Posted 9/2/2015 11:03 PM (GMT 0)
kbs, curious over the past year what different abx, herbs, etc. regimens have you tried with your LLMD? what is your diagnosis in that what bugs do you have? if you don't mind sharing thanks.
Posted 9/3/2015 6:04 PM (GMT 0)

sarahm620 said...
I'm just trying to save you from wasting your $5,000. That's all.


I totally understand, Sarah - hopefully my response didn't come off as rude.

Traveler said...
Yet still you already have a diagnosis - so what can they truly do for you for $5,000????


Possibly come up with a treatment plan that is more effective than what I've already tried, and give me a more objective understanding of where I stand neurologically. But I'm not very convinced it will actually be beneficial at all (I was hoping someone who went there could convince me otherwise) - so I'm leaning towards saving that money now.
Posted 9/3/2015 6:16 PM (GMT 0)
You have to remember that no one knows what will work for each person when they start into treatment. It's all a guessing game as to what your body will work with and what will cause too much herxing and what your body won't respond to at all. More testing won't help that.

Treatments can cost a lot of money as it is - the best thing to do is find a good LLMD or LLND or both - and just kind of go for it. Start off with what works for most people and go from there. There just aren't any protocols out there that we can test and find out that protocol 1, 2, 3 or 4 will work best for us. Many have found that they heal best by combining pharma abx and herbal abx to treat each infection. Personally, I had to use only herbs.

I'm so sorry!! I really do wish there were better answers out there, but we haven't even convinced enough of the right people that chronic Lyme exists - so there aren't good tests to even show that yet, much less what protocols treat chronic Lyme best.
Posted 9/3/2015 7:14 PM (GMT 0)
Sorry if I came out rude either, I just get really frustrated because I feel like these big university centers claim to help people but they really aren't. I truly believe Dr. R (and all our other LLMDs) knows more than they do!
Posted 3/9/2021 9:01 PM (GMT 0)
Apologies in advance for reviving a thread from 6 years ago.

I am wondering if anyone has actually been to Columbia University's Lyme and Tick-Borne Disease Research Center for an evaluation and can speak to their experience?
Posted 3/9/2021 11:43 PM (GMT 0)
Hi Adam,

I went to see them in December of 2019, and for me it was a worthwhile visit.
They did Lyme testing through 3 different labs. They also tested for B. Miyamotoi which came back positive. Treatment for miyamotoi is the same as for Lyme. It was validation that I have/had several tick borne infections.

They don't treat but do make treatment recommendations.
Posted 3/10/2021 12:43 AM (GMT 0)
Thanks! May I ask what they recommended in terms of treatment?
Posted 3/10/2021 1:14 AM (GMT 0)
30 days of Doxycycline 100mg twice daily.
They said European studies have shown 150-200mg twice daily is more effective at crossing the blood brain barrier and entering cerebrospinal fluid.
I took the 100mg doxy for 2 weeks and then switched to 200mg for a month and did not notice any positive results.
When I was first diagnosed 4 years ago, I took doxy and noticed immediate results. about 90% of my symptoms disappeared after just a few days. I've been left with joint issues and some cognitive problems. Over the last 4 years I have been on a huge variety of combination antibiotics and have had periods of relief, but the joint problems always return.
Columbia also said that IV Ceftriaxone 2mg daily has been shown to help with joint issues but warned of risk of clots and infection. I opted to not go the IV route.
✚ New Topic ✚ Reply