Questions about the Lyme and Tick-borne Diseases Research Center

[diefortheswarm]

I am looking for information about the Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center from people who have been patients there.

I am looking for the following information as well as anything else you want to add.

What sort of diagnostic tests and evaluation was preformed by their “Second Opinion” evaluation service?

What sort of treatment options were available?  More specifically did they offer any non-antibiotic treatment options such as auto-immune treatment?

Thank you for your help.

[JackieCalifornia]

Most excellently said.  

[dolfnlvr]

I am not medically trained, but I have a background in microbiology and immunology that makes me suspicious of autoimmune treatments for this infection--or any "post infection AID" (autoimmune disease/disorder) for that matter.  If it were me...and I could be swayed by solid scientific evidence mind you, I would need some very strong evidence that the actual infection was certifiably GONE before I would consent to AID treatment--which, by nature, suppresses the immune system and makes the patient more vulnerable to infections.

AIDs are real, and I don't deny their treatment.  However, I worry when doctors claim that very specific symptoms, often the same as those triggered by actual infection, are the result of a targeted immune response or "overresponse."  The reason I am skeptical is that an immune cascade would more often result in diffuse symptoms including skin, joint, bone, neurological and hyperresponse to new infection type issues.  

I also don't doubt that autoimmune treatments could result in lessened symptoms for as long as the patient remains on the treatment.  Since most symptoms are caused as the body RESPONDS to infection, not allowing your body to respond would result in less discomfort.  But it could also result in higher infection rates.  And antibody tests for infection would yeild nothing, because your antibodies are on leashes in the first place.

Doctors who specifically study this disease, and AIDs have great expertise and knowledge upon which they base their treatments.  But, before I consented to treatment, I would expect my treating doctor, or his PA etc, to sit with me for as long as it took to answer my questions and assure me that the science they are using is the best fit for me.

Columbia isn't one of the best teaching hospitals in the country for nothing.  They have a wonderful research program--so I would "trust" them to share what they know.  From there, all decisions are individual, and based on personal experiences.

Good luck!!  And, by all means, let us know what you find out!!!

[mojogal]

I don't know of anyone being treated there or any other well known think tank where you would think they should know something but they don't. Most of us have found an LLMD that we go to. Until Lyme is accepted as the massive outbreak that it is, not many doctors are going to accept it. My nurse friend always compares it to when AIDS, first came on the seen. She worked at the CDC at the time, people were dying and nobody wanted to deal with the epidemic. Now, my friend, who also has Lyme, says Lyme is a much more serious epidemic.
So sorry you are sick.

[Ricobord]

Sorry to hear you have chronic lyme. Most of us here know how miserable Lyme can be.

I know someone who went to Columbia's Lyme center.  She said they were fabulous and understood Lyme better than anyone else she had ever spoken to. They explained to her how Lyme infected and affected the body so she had a better understanding of what was going on.  They did a thorough evaluation of her and gave her a treatment plan.  She had complete confidence in them.  However, being sick had taken a big toll on her life and she had neither the insurance nor the personal funds to pay for the treatment.  She has been living with chronic Lyme now for well over a decade and manages it with herbals.  She recommended Columbia's Lyme center.

Since Lyme mimics several different autoimmune disorders, I would guess that you need to properly treat your Lyme infection first, and then see if any symptoms or possible permanent damage remains.  Permanent nerve damage from Lyme does not necessarily mean there is now an ongoing autoimmune disorder.  There is much in this area that is not known.  I would be curious to know if they have any way of knowing if one's immune system is attacking one's own cells in the midst of Lyme infection.

I would be very interested in reading papers or studies on this.  I am amazed to realize how little modern medicine knows about how the immune system functions, or malfunctions in many cases.

[JackieCalifornia]

I am not aware of anyone posting on this site who's treated at Columbia.

From my (non-medically trained) reading, there is a difference of opinion about the alleged auto-immune reaction after treatment for Lyme.  IDSA holds the view that after the relatively short treatment regimen their guidelines recommend, any continued symptoms are due not to persistent and uncured infection but instead to the immune system continuing to react to phantom bacteria.

I believe I have read that others in the field, with an awareness of the long reproductive cycle of Lyme (as with TB and Hansen's), do not necessarily agree with the auto-immune explanation for continued symptoms post-treatment, but instead look to treatment failure as a possibility which should be considered, due to too short a treatment period.

[diefortheswarm]

I have chronic lyme disease which is why I am looking for information about this clinic/research center.  I intend to contact them myself.  First I am asking for opinions from people who have been treated there.  The reason I am asking about auto immune treatment is because the research from this center and others points at scenario where the chronic infection can trigger an auto immune response in the brain.  This can happen in virtually any other type of infection of the brain.  In Lyme disease this results in a duel cause of symptoms and both must be addressed and treated.

[Ricobord]

Do you think you might have Lyme Disease or are you doing research for another purpose?

Your second question is curious.  You are asking if the Lyme group at Columbia diagnoses and treats auto immune disorders.  They research Lyme and other tick borne bacterial and parasitic infections.  Why would you think they might treat auto immune disorders?

I am wondering why you don't just contact them and ask them these questions yourself.  Sorry if I sound overly suspicious, but I would like to know more about the nature of your query before I respond.