RE: Columbia University Medical Center Lyme Disease Center

[Guest guest]

Columbia is the one serious establishment hospital in the country that might

actually be worth your time. They've done a lot of the cutting-edge work there,

with significant funding and support from the Lyme community. They listen to us,

and have done some real science that's helped us.

My general sense is that what's going on there is the kind of research that

steps beyond the controversy entirely. They're not coming at it from an

infectious disease perspective; they're creating new knowledge in areas like

genetics, neurology, and so on instead. This is the kind of new perspective that

moves everybody beyond the deadlock, by giving us new ways to understand the

disease that take it out of the hands of the ID docs.

If we can't dissuade the ID doctors, we can help make dinosaurs out of them

(though they're doing a good job on their own, since they've committed

themselves to remaining 20 years behind the research). What's going on at

Columbia is precisely how they will become obsolete.

Sara

On Jan 3, 2011, at 5:40 23AM, Farhangi wrote:

> Hello,

>

> I see an LLMD, but I am also considering getting a second opinion about

> treatment from the Columbia Medical School Lyme Center. Their website seems

> very reasonable in the whole Lyme Disease controversy, but I am wondering if

> anyone has any experience with them. Is there a particular doctor you'd

> recommend? Am I correct in that they seem to be steering a middle course

> between the extremes in Lyme? Any other advice?

>

> Many thanks in advance,

>

>

>

>

>

[Guest guest]

When I called Columbia a couple of years ago, I was told that were a

research facility only, that they did not see patients other than those who

were taking part in the research trials.

I'd love to hear if this is no longer the case.

_____

From: [mailto: ] On Behalf

Of Sara

Sent: Tuesday, January 04, 2011 12:05 AM

Subject: Re: [ ] Columbia University Medical Center Lyme Disease

Center

Columbia is the one serious establishment hospital in the country that might

actually be worth your time. They've done a lot of the cutting-edge work

there, with significant funding and support from the Lyme community. They

listen to us, and have done some real science that's helped us.

My general sense is that what's going on there is the kind of research that

steps beyond the controversy entirely. They're not coming at it from an

infectious disease perspective; they're creating new knowledge in areas like

genetics, neurology, and so on instead. This is the kind of new perspective

that moves everybody beyond the deadlock, by giving us new ways to

understand the disease that take it out of the hands of the ID docs.

If we can't dissuade the ID doctors, we can help make dinosaurs out of them

(though they're doing a good job on their own, since they've committed

themselves to remaining 20 years behind the research). What's going on at

Columbia is precisely how they will become obsolete.

Sara

On Jan 3, 2011, at 5:40 23AM, Farhangi wrote:

> Hello,

>

> I see an LLMD, but I am also considering getting a second opinion about

> treatment from the Columbia Medical School Lyme Center. Their website

seems

> very reasonable in the whole Lyme Disease controversy, but I am wondering

if

> anyone has any experience with them. Is there a particular doctor you'd

> recommend? Am I correct in that they seem to be steering a middle course

> between the extremes in Lyme? Any other advice?

>

> Many thanks in advance,

>

>

>

>

>

[Guest guest]

I tried 4 times to get into the Columbia  study for my son.  Was told they see

only 2 patients a week if you are lucky enough to get a phone call back from

Kathy Corbera 212-543-6508.  I never did.  Best of luck Kathy (not Cobra)

> Hello,

>

> I see an LLMD, but I am also considering getting a second opinion about

> treatment from the Columbia Medical School Lyme Center. Their website

seems

> very reasonable in the whole Lyme Disease controversy, but I am wondering

if

> anyone has any experience with them. Is there a particular doctor you'd

> recommend? Am I correct in that they seem to be steering a middle course

> between the extremes in Lyme? Any other advice?

>

> Many thanks in advance,

>

>

>

>

>

[Guest guest]

,

I called them yesterday and that is exactly what they said. They do not

treat patients, besides the research they only offer the " Second Opinion "

service, which is a two day battery of tests and evaluations to determine if

you have Lyme Disease or not. I imagine this would be helpful to someone

who thinks they might have Lyme, but has not been diagnosed by their doctor.

Not so helpful if you are already confident you have lyme. And in any case

they do not see pediatric patients, even for the second opinion service (I

had called for my 11 year old son).

The doctor I spoke to at Columbia told me to go to the Lyme Disease Assn.

website and get an LLMD referral there. I said it was disconcerting that

there are so many different treatments and protocols, and she agreed, saying

the disease was different in everybody and that's why the treatment has to

be tailored to the individual patient.

My son had an allergic reaction to the IV rocephin, and goes on IV zithromax

today. Fingers crossed he has no problems and this antibiotic works!

When I called Columbia a couple of years ago, I was told that were a

research facility only, that they did not see patients other than those who

were taking part in the research trials.

I'd love to hear if this is no longer the case.