posted
I am scheduled to have a 2-day evaluation in May at Dr F's Lyme Research Unit at Columbia Univ. I'm wondering if anyone has already gone through this and what their experience was like.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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I am 2 1/2 years into treatment and have made alot of progress, but I'm concerned about residual issues, especially neurological: brain zaps, mild hand tremor, short-term memory issues, etc.
It will cost about $5,000, likely covered at 80% by my insurance.
I just had the feeling that with the research they are doing, they must be on the cutting edge of Lyme/coinfection diagnosis and treatment.
Please share with me any particulars, pm me if you don't wish to post.
I will be very angry if this is a waste of time. I have enough anger already that I'm trying to keep a lid on. Thanks. -Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
I will PM you. I hope others will share what they've experienced or heard.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by paulieinct: I just had the feeling that with the research they are doing, they must be on the cutting edge of Lyme/coinfection diagnosis and treatment.
Do they treat? I was under the impression they just diagnose and don't get into treatment.
Posts: 1142 | From South | Registered: Dec 2010
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posted
My understanding is that they do not treat, but make recommendations for treatment based upon their second-opinion diagnosis.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
I do know that Time For Lyme gives them funding. As TFL is a patient advocacy group, i.e. one of the good guys, I made an assumption that they would not be donating to a program unless it had merit.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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quote:Originally posted by paulieinct: I do know that Time For Lyme gives them funding. As TFL is a patient advocacy group, i.e. one of the good guys, I made an assumption that they would not be donating to a program unless it had merit.
- They're on the good side.. just not sure how far on that side.
NO ONE here has info for Paulie???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I did not go through the Columbia second opinion program per say but I did have a consult with Dr. B. neurologist, my LLMD recommended it, as I had mostly all bad neuro symptoms and Dr. F.
Also had trans magnetic nerve testing there. I found it helpful, you can PM me for details.
Grace
Posts: 27 | From central nj | Registered: Mar 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
PM sent.
Posts: 3792 | From around | Registered: Mar 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
It's my understanding that Time for Lyme is the organization that did the fund raising over the course of many years to raise the funds to open the Columbia Lyme Research Center.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
The short answer, J-Dog, is that it hasn't been helpful for some. I wouldn't recommend it at all. Other options would be better.
Posts: 3792 | From around | Registered: Mar 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Agree with Rumigirl.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I went through the two day testing and to be honest, didn't find it helpful at all. Many that I've spoken to have agreed that it is a waste of time and money (my insurance did not cover the cost and I think we were out $3000) I went in with the same hope that I would find some difinitive answers and in the end was told that if it's lyme, it progresses slowly and I can treat or wait for it to get worse. I was very disappointed with my experience, to say the least...
Posts: 69 | From PA | Registered: Aug 2005
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Shay- has your son done IV antibiotics? My son came around quite a bit after 10 months.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I'm in the same boat with jazzygirl.
I also did not go through the Columbia second opinion program but I was referred to Dr. B. (neurologist) by my LLMD because I had ALS neuro symptoms.
I had a ton of tests done there, mostly for rule outs for ALS. I also had a SPECT scan done.
I recommend people to Dr. B. if they are getting jerked around by non-LL neuros.
Her opinion helped my LLMD justify a prolonged course of IV antibiotics to my insurance company.
I would go back to her, especially if I ran into new neuro symptoms.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I know of two people who went who got dx's that made their cases much more difficult. That is, they said that they didn't have Lyme, etc. When that wasn't true. (I'm sure that they thought it was true).
They are way too cautious at best from what I have heard.
One went through the whole program, one went to Dr. B. But I've heard of others, too, where it was similar.
Posts: 3792 | From around | Registered: Mar 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If they actually knew what they were doing, they would be testing for the Filarial Worm co-infection that many (over 40% according to Eva Sapi Lyme researcher)that the ticks are carrying and infecting people with. Burgdorfer found these in the ticks he dissected.
I discovered this to be the case with me, and I suspect could be why many are chronic and going undiagnosed. Maybe another expensive black tie fund raiser could help them wake up.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I would be curious if anyone has any recent knowledge of Columbia Lyme Center 2nd Opinion. Thanks
-------------------- mpa Posts: 1 | From virginia | Registered: Oct 2016
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I would also like to hear more about this. The Dean Center for Lyme at Spaulding in Boston does not treat either. But they have been helpful to me in doing additional testing, referrals to rule out other things, and also advocating for continued IV ABX with my insurance co. - teaming up with my LLMD.
They are also doing some studies involving trans cranial neuro-magnetic stimulation for those affected neurologically by Lyme. Perhaps the team at Columbia is similar? Dean Center takes insurance and they do a lot of fund raising in order to be able to provide these services.
Posts: 2387 | From New England | Registered: Aug 2011
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