Columbia lyme and Tick-Borne Diseases Research Centre offer second opinions, has anyone had one?

[helperofearth123]

The Columbia lyme and Tick-Borne Diseases Research Centre in New York offer second opinions on chronic lyme disease, has anyone been there to have this done? What was your experience like?

http://columbia-lyme.org/patients/second_opinions.html

http://columbiapsychiatry.org/clinicalservices/lyme-disease-service

 

[duncan]

I am not sure how active they are anymore. I see Fallon still publishing, but with what to me seem unexpected associations. I have called the research center on a few occasions, but nothing ever came of my efforts.

 

[fibrodude84]

I'm going to look into that. I know Stony Brook also has one but they probably all follow CDC very closely.

 

[duncan]

Stony Brook is a decent shop. Not sure who you would turn to there, though. Benjamin Luft I suspect is swamped with vaccine stuff. Pat Coyle? I almost went there, but they are crazy far for me.

They probably follow the CDC I suppose. I know the NIH outsources some of its labs to theirs. But the NIH also uses Immunetics and Imugen and Mayo, so I'm not sure how meaningful that is.

Is it the lab that is important to you? Or an accurate diagnosis. What I mean by that is a patient could go to a clinician like Leigner, and he would use labs he knew were reliable to work on Lyme or babesia or whatever. I'm not trying to plug Leigner, I'm just using him as an example and he's in the general area.

 

[fibrodude84]

I don't know the individual doctors there or much about SB in general, just that they don't believe in treating chronic lyme. I'm not sure how their tests compare to Igenex but may be worth going there if I continue feeling sick after doxy.

 

[duncan]

Yeah, well, politics. In the U.S, it's usually diagnostically going to boil down to either Lyme (acute vs late stage), or Post Treatment Lyme Disease Syndrome. Practically speaking, it shouldn't matter to patients since ultimately all we need is a doctor who can diagnosis and treat - and treat outside of prescribed norms if deemed necessary. In many states, that is not going to be easy to do. Also, the reality is that it DOES matter, because once you're slapped with the PTLDS tag, it's devilishly difficult to find treatment, or more precisely, anybody who is willing to offer treatment options.

If I were keen on being treated at a specific facility, I would simply suggest that I have been refractory to treatment to date (if I'd in fact received an IDSA recommended regimen), and have late stage, and ask straight out if they would be willing to try further and different regimens. I fear you will discover many will not be willing to do so.

Or I'd pick a reputable physician - it doesn't have to be an LLMD, but odds are it would be - that is willing to color outside of the lines. There are several of these in striking distance of both Columbia U and SB. In Hudson Valley, NY, 50% of ticks tested recently came up positive for Bb. So there's a bunch of clinicians over there that have hung up a Lyme shingle and are well versed in treatment options. I would imagine what a doctor such as this would do is give you a physical, run blood work and decide if they want to run an MRI or SPECT, then send the draws to SB or IgeniX or a lab they trust, and send you to Columbia U or whatever to execute the MRI. I am told it DOES matter who does the MRI or SPECT, in that interpretation is everything. But I'd urge caution: not all of these doctors are necessarily copasetic.

Incidentally, even though it's a political no-no to call anything Lyme "chronic Lyme" in the U.S., the NIH has at least one long-running study that identifies the patient cohort as chronic Lyme patients. That's only because the test was launched way back in the 90's, predating the reluctance that currently envelops the term.

 

[duncan]

Speaking of treatment, one of the paramount differences in treatment between ME/CFS and Lyme is in Lyme circles exercise is strongly encouraged. The logic is the spirochetes don't care for oxygen.

So it gets tricky when you are one of the folks that has received a dual diagnosis of both Lyme and ME/CFS. It's that old Damned if you do, damned if you don't thing.

 

[fibrodude84]

I was just reading about ozone therapy for CFS and lyme. I wonder if that can help or if it's dangerous or quackery.

 

[duncan]

Treatments. I don't like talking treatments usually and here's why: Once you step outside of the 90% or so cure rate for acute Lyme with your basic array of abx, no one outside the IDSA can agree on what will fix what ails you. Some treatments work for some people. Some don't. Some not only won't but they may make you sicker.

Personally, I don't like the idea of being a guinea pig. I like even less the idea of being scammed. So I am very careful about what treatments, and with whom, I embrace.

The flip side of that is I will never win Medical Pioneer Of The Year Award, and I am still sick.

Moral of the story? Once you enter chronic Lyme territory, or even Late Stage if you ask me, we are more or less on our own. My sole recommendation is do your due diligence.

Just another endearing similarity between Lyme and ME/CFS.

But maybe someone else on the forum can offer better advice.

P.S. Regardless of where you go, you should be tested for the whole nasty nest of TBD's, not just Lyme, since which coinfections you have may dictate what treatments are prescribed.