posted
I am considering trying to become a patient of the Columbia University Lyme and Tick-Borne Diseases Research Center. The Center was founded, in part, by support from the Lyme Disease Association.
The info on the site suggests that the Center is fairly progressive on Lyme. It certainly recognizes chronic Lyme, recognizes the pitfalls of current diagnostic guidelines, and supports IV antibiotic treatment. Then again, a few of the blurbs seem like the Center might compromise with IDSA, the CDC, and insurance companies on some issues.
For example, when deciding on when to stop antibiotics the Center states, "Most valuable would be to use objective markers to measure change in response to treatment, such as neuropsychological testing or neuroimaging before and after the repeated course of treatment. The use of these objective tests allows the clinician to determine whether physiological and cognitive changes occurred, and it allows insurance companies who pay for the treatment to see that their investment was worthwhile."
Then again, participants in their research studies are diagnosed and treated free of charge. Does anyone know anything about the Columbia University Lyme and Tick-Borne Diseases Research Center? It certainly seems much more progressive on Lyme than any other university in the US. Is it a good option for treatment?
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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it's my understanding that it is a reseacrh facilty not a treatment center. The only way to get treatment there is to be selected for a study. That aside these folks are leading the way as far as research and being advocates.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lots of info on this center if you do a search.
TinCup I believe said run, run run..
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
Personally I think it is wrong to commit to a study as a control.
Luke: All right..., I'll give it a try. Yoda: No. Try not. Do... or do not. There is no try.
I sorta feel that way when it comes to my brain and life.
But there are a lot of reports due-I guess the proof will be in the pudding. ================================================== Given the significant risk and the lack of sustained benefit, Dr. Fallon and his co-authors recommended against the use of a course of 10 weeks of IV ceftriaxone followed by 14 weeks of no antibiotics as a treatment strategy for a sustained improvement in cognition.
The acute and sustained antibiotic-associated improvement in pain and physical functioning among subgroups of patients with greater severity of symptoms was notable as these are among the most disabling symptoms experienced by patients;
however, because these were secondary and not primary outcome measures, conclusions regarding the benefit of repeated IV therapy for this set of symptoms must await further investigation.
This NIH-funded study was published in Neurology on-line in October 2007 and in the journal itself in March 2008.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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WildCondor
Unregistered
posted
They do studies but you have a 50% chance of getting no treatment. They focus on brain SPECT scans and research there, not treatment.
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I have been involved in studies there. I have not been treated there. I also jwas hoping to initially, but found LLMD treatment easier and very effective. Best to go to a LLMD unless you live nearby like me and can participate easily. Local NY/NJ LLMD"s send their patients there for spect scans, etc.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
Thank you all for your advice as always. I will stick solely to my LLMD. If he recommends that I go there for scans then I will. I am sure that treatment will be more aggressive with my LLMD, and I am confident putting myself into his capable hands.
I met with another LLMD who has a vast amount of experience with Lyme. She only does diagnostic work. She diagnosed me with chronic neuroborreliosis and told me that I likely have encephalitis and/or cerebral vasculitis. That diagnosis raised my urgency, and I have secured an appointment with my LLMD for this week.
I'm trying to get treatment as soon as possible. I'll let you guys know as soon as I start treatment and how it goes. In advance, thanks to you all for all your advice and support.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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posted
I saw Dr. F who is involved in the Columbia Lyme Research center in his private NYC office.Believe he also has an office in Connecticut somewhere. From what I understand he does not necessarily treat patients unless they are accepted in a study. He did however review my med records and give a written recommendation to my local doctor. Cost me $300 out of pocket for this though as he is not a participating doctor in my insurance plan. I can't participate in any of the studies as I have severe/progound hearing loss and the study researchers concluded this would skew the studies and maybe make the results invalid. I think DaveNJ is correct the center does research not treatment.
Posts: 35 | From Reading, Pennsylvania | Registered: Mar 2010
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posted
I looked into this. I think Hoosiers51 (hope I got the name right) went there. As far as getting the evaluation they offer--it costs a fortune-- and then they are not a treatment facility. There were no research studies available at the time. They are very focused on the SPECT and neurocognitive assessment.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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