Col Univ Lyme and Tick-borne Dis Center, NY

[lyme_mom]

Hi everyone,

 

I am hoping that some of you know something about the second opinion service that Columbia University Medical Center's Lyme and Tickborne Diseases Center offers. It is a two day evaluation that involves pretty intensive neuro-cognitive and psychiatric testing as well as a thorough medical history. Beyond what the website says I am interested in what kind of information you get as a result of their service and how holistic are they in terms of what they look at? Ie. gut issues, heavy metals, etc. The program is run by Dr. Brian Fallon, Professor of Psychiatry at Columbia University who has a great reputation in the Lyme community. I have a relative who lives several states away from who suffers from severe depression/suicidal thoughts who has been very ill for the past 18 months. She has been hospitalized several times, has tried many different psychotropic meds and has even had electro shock therapy. Her doctors consider her "treatment resistant." About a year ago we brought her to see our llmd who diagnosed her with lyme based on her symptoms (she has 18 lyme symptoms off the ilads list) and her low cd57 score of 16. Her igenex test showed a number of indeterminate lyme specific bands and may have had one positive like 41. The igenex result said "negative" but we all know that it is a clinical diagnosis and the presence of an indeterminate band is often interpreted as slightly positive. She responded to the initial lyme treatment (the depression and anxiety lifted after two weeks of doxy and she got increased leg and joint pain). Then her local doctors told her she doesn't have lyme and she stopped the meds and tanked again. We got her back on them but her progress was slow. She didn't always do what the doctor ordered and she did very little detox. Her heavy metal blood test shows 95th percentile toxicity. Then she moved into a house in which there is a mold problem and not long after she got worse (this is my interpretation of events). Her psychiatrists and psychologists do not buy the lyme diagnosis and are not interested in her serious gut issues or heavy metal toxicity. One even blamed the antibiotics on her worsening depression. We may be able to get her in to the Columbia Univ program for a second opinion and I am hoping we would get some great info from it b/c it is not going to be totally covered by insurance, maybe not at all. Anyone have any info on this or has anyone had similar experiences? Our llmd says that she may need a picc line but we really need to get a second opinion from a psychiatric source to get total buy in on a biomedical approach to her psychiatric symptoms. She doesn't even believe she has lyme and blames herself on her problems. I think something is obviously going on besides psychiatric problems b/c her cd57 score is so abnormally low. Also she has physical symptoms like leg pain, nightsweats, vision problems, sound and noise sensitivity, brain fog, poor memory, forgets words, etc. A lot of cognitive stuff going on and she is really too sick to get educated about lyme as those of us on this board have done.

 

Thanks in advance for any suggestions!

 

Patty

[lynn]

I don't know the answer to this question (I wish I did!) but I am very interested in other's answers! Is Dr. Fallon considered an LLMD? Does anyone know about billing/insurance practices?

[PacificMama]

Hi Patty,

 

We have relatives who took their teenage son for evaluation at Columbia. I'm not sure if it fell under the "2nd opinion" designation or what. And I can't tell you what exactly was evaluated, except that it was pretty thorough. Their hope was to get the "diagnosis" from somewhere official and respected so that they could get the proper abx treatment back in their home state. I know they felt like it was a good experience, and of course liked Dr. Fallon very much. I do think it was fairly expensive.

 

I haven't checked the Columbia site, but I know from time to time they have trials going on, where participants can get treatment for free/reduced.

 

I'm sure you could get better info from just calling Columbia.

 

Alternatively, there is http://www.n-e-t-s.org/

This is the practice of Dr. Leo Shea, current VP of ILADS. Here is their blurb:

N-E-T-S was founded in 2001 by Leo J. Shea III, Ph.D. to provide neuropsychological evaluation and treatment services to individuals diagnosed with neurological and autoimmune disorders. Since it's inception, N-E-T-S has opened offices in both New York City and Boston.

 

Hope she is doing better soon.

Mary

[sptcmom]

Hello

I have a little patient who will be evaluated at Columbia Presbyterian LD center by Dr Fallon and his team. This child was born there and has specialists there and so it was a logical choice for mom and dad.They do have an appt but this child is frail and the appt won't happen until it happens if you know what I mean.

Im sorry that right now I don't know but sure can update you when that happens.But these parents are very influential in the NY/NJ business community and their sources told them that the LD center was fantastic, the approach and staff were top class. Overall they've had a phenomenal experience with Columbia staff last 3 years. They are very detail oriented mom says. BUT two problems she's faced are: if the child is mild to moderately involved the approach has not been very aggressive- mom says the docs see so many critically disabled children everyday and can be less sensitive to a child who seems to be doing kinda ok. Secondly it been really hard getting copies of tests, reports etc to bring to other appts. Im still waiting after 2 years.

Mom has circumvented the first problem by being aggressive in her approach and very actively participating in her child's care.The second we have no answer to.

Jodie

Edited January 17, 2011 by sptcmom

[lyme_mom]

Hello

I have a little patient who will be evaluated at Columbia Presbyterian LD center by Dr Fallon and his team. This child was born there and has specialists there and so it was a logical choice for mom and dad.They do have an appt but this child is frail and the appt won't happen until it happens if you know what I mean.

Im sorry that right now I don't know but sure can update you when that happens.But these parents are very influential in the NY/NJ business community and their sources told them that the LD center was fantastic, the approach and staff were top class. Overall they've had a phenomenal experience with Columbia staff last 3 years. They are very detail oriented mom says. BUT two problems she's faced are: if the child is mild to moderately involved the approach has not been very aggressive- mom says the docs see so many critically disabled children everyday and can be less sensitive to a child who seems to be doing kinda ok. Secondly it been really hard getting copies of tests, reports etc to bring to other appts. Im still waiting after 2 years.

Mom has circumvented the first problem by being aggressive in her approach and very actively participating in her child's care.The second we have no answer to.

Jodie

Thanks for your suggestions and well wishes everyone! I spoke to them and they said she may be able to get a cancellation due to the urgency of her situation because she is suicidal and has exhausted all that psychiatry has to offer (including electro shock which I was not happy about). Mary, I heard about Leo Shea and I called his office. His neuro cognitive test is about 3k (can't remember the amount exactly) and the Columbia University program is 5100. A large chunk of it is for testing that is billable to insurance, albeit out of network. I will find out tomorrow whether her insurance will cover any of these tests. The other psychiatric lyme option is Dr. Bransfield in Red Bank NJ. Of course getting an opinion from Columbia Univ would be more impressive to non believers like her doctors who think she was overdosed on antibiotics! I obviously don't know what they would say at Columbia Univ but I can't imagine that they will not think she has lyme or bartonella. She lives in a lyme endemic state pretty far from urban areas where you can find good doctors who understand lyme. I am so glad that we live in an area where we have our pick of excellent integrative physicians and complementary health experts outside DC. There must be literally thousands of people like this relative around the country who are going untreated due to ignorance of psychiatric practitioners. Jodie, I will keep that in mind about getting the records :-). I will try and go with her if she goes if I can get away. Thanks again. I will let you know how it goes! If you hear anything further please let me know :-). Thanks again for your suggestions.