A trip to Miami Beach (and a visit with Dr. Irma Rey)

A quick report from my trip last week. This is equal parts blog, doctor report, and travelogue. Feel free to move to the docs section or elsewhere if more appropriate.

I ventured to Miami to see Irma Rey, who works with Nancy Klimas. I saw her at the University of Miami, hence was able to use my insurance coverage for both the visit and the labs. I had been on the waiting list for over a year, but now that Irma Rey is there too, I believe the wait is shorter. So if you are thinking of making a trip to Florida, now is a great time to go, either to the private clinic, or to the U of M itself.

I liked Dr. Rey. She is grounded, earthy, full of good humor, a touch sardonic, in a I know--the-ways-of-the-world sort of way, and just the right amount to be endearing -- and very talented. She is working closely with Klimas on cases, consulting and reviewing when necessary. The details of their diagnostics are ably described in other threads on the forum. Ill simply confirm that they are running a full immune panel on my sample, including natural killer cell function and cytokines, along with viral titers for EBV, HHV-6, Parvo, and several more. They will hone in on the specifics of treatment once those results are back.

They are also hard at work on their own XMRV antibody assay, and they expect the lab at the Univ. of Miami to become a gold-standard reference lab in the near future. They are currently collaborating with the NIH on this. My sense, and this is just my hunch, and not based on any factual knowledge, is that we are talking months, not years. No indication on where their research stands as far as correlation with CFS. (They kept a solid poker face in regards to what their samples were showing but here too, results should be published within months.) If validated, however, I believe they will be ready to treat with antiretrovirals, and will have a very good sense of which ones to use.

Ill post more once I have my results and a strategy in place.

A bit on logistics. Miami Miami Miami. Wow. Thanks to the wonders of Expedia travel packages, I got to stay in a great little hotel in South Beach for the reasonable price of $75 a night, no doubt in part because its currently low season. A flyer bus goes directly from the airport to about 3 blocks from the hotel (the Winter Haven google it, it will come up) right in the heart of the Art Deco disctrict and a few feet away from the beach. Paradise found. Miami Beach is the sort of town that reminds you of all the reasons you are trying to get well again in the first place. Hello Cuban cigars and roasted coffee beans. Mojitos in tall icy glasses with the aroma of freshly crushed mint and rum. Music everywhere. Miles of beaches and deep blue water. Enough to make a grown man swoon, with or without hypotension. I arrived on Monday afternoon and spent the evening soaking in the ocean. My appointment was on Tuesday, and I made it back in time to soak some more on Tuesday eve and on Wednesday morning before heading out to the airport for an evening flight. On Tuesday, the sky was overcast with a slight rain. As darkness descended on the water, I could see the sun setting over Miami, with a few single rays of light piercing the clouds. It felt tropical and full of heat, mist and myth the stuff of Marquez novels.

The visit prompted me to create my own Miami Beach functionality scale. Im shooting for the Miami Beach Halloween half-marathon (whether in a year or in ten), and being able to cross the finish line, light up a fat hand-rolled cigar, sip a heavily caffeinated coffee, drink a real mojito and head out dancing all night. Yeah, its a tall order. But hey, Ill settle for a two mile canter and some good rum. In the meantime, heres to keeping hope alive.

Comments

Hmm. I somehow posted twice and can't figure out how to delete the duplicate. If a moderator can delete the extra copy, great.
 
firefly, a great place to visit a doctor, right? Loved your description of Miami Beach and all that entails. Thoroughly enjoyed it. Thanks.
 
Thank you firefly, I will be at the clinic in exactly 2 weeks. I don't think I can handle beach visit though.
 
Kati, I'm glad you will be down there. Wonderful folks. I'll look forward to hearing how it goes. All the best for your travels, and I hope it's a really profitable visit for you. Best wishes.
 
Will be looking forward to hearing the results - and I love the goal! Beach, motion, mojitos. Me too! (Well, maybe not the cigar; I'd prefer that other fine smokable product I hear is pretty prevalent down there.)
 
Did you say you got your insurance to pay for everything?? Or dr visit and labs? For some reason I did not think they took insurance.
If they do Miami is about 8 hours from me. So I might make a dash when I can get an appt. Were you pleased with the Dr. visit?
Glad you went before the oil shows. It is the saddest thing in the world. I only live about an hour and fifteen min from all this beautiful white sugar sand. Seafood all the scallops, fish shrimp you name it.
Oh well I am devasted not just for me but all the people that make their living off the ocean. Most of us have beach homes in the gulf and pandhandle.
If it effects me like this I cannot imagine all the people that depend on the gulf for their livelyhood.
Oh well sorry for the rant just made me think about our beautiful ocean and animals.
Hope the visit will be a success.
 
HI hensue,

I think it depends whether you see them at the University of Miami clinic, vs. the new private clinic. At the University of Miami: yes, the visit is covered by most insurance policies (though it depends on whether you have HMO or PPO etc.) and the labs, are covered (again, though, this varies from insurance to insurance in terms of authorizations required etc.) The waiting list is a bit longer, and you don't do a tilt table test or VO2 max, or some of the cognitive tests they do at the private clinic. But, you are getting the sophisticated immune testing and testing for pathogens including EBV and HHV6.

At the clinic: shorter waiting list, easier to get in but you have to pay for the doctors visit. I believe it's around $800 to 900. My understanding is that the labs are covered by insurance, assuming your insurance approves.

I would definitely give them a call. Here's the private clinic site: http://www.cfsclinic.com/index.html
The person to talk to if you want an appt. at the university of Miami is:

Marta A. Gonzalez
Patient Access Representative
Allergy and Immunology Clinic
305-243-3291
Fax: 305-243-1661

And yes, they know what they are doing! If you have a chance, go for it!
Good luck.
 
Last thing: I'm actually not sure if they do the tilt table testing and VO2 max at the private clinic. I think the main difference is that the doc visit is out of pocket, but you can get an appointment faster than at the U of M.
 
Hi Firefly,
I was so happy to see the info you posted about Dr. Rey.I have an appt. with her in mid July. How long was your appt?
I had the same doc (who also diagnosed me) from 1990 until 2007. I've been in between docs and am looking forward to my trip to Miami to see Dr. Rey.
 
Hi ArmyMom,
I was there about an hour to an hour and a half. First a medical resident took my case history, which he then presented to Dr. Rey. Of course, you can fill in and add information if you feel there is any aspect that the resident is not covering. It's just a good way to put all the information on the table and to start discussing the case. I spent some time writing up a one page summary of my onset, symptoms, medications tried, and outcomes for each, which saved some time and gave her a good background. I've had some very through autonomic testing elsewhere, so they only summararily checked my sitting and standing blood pressure and pulse, but they might spend a bit more time doing this if you have orthostatic symptoms and no previous tilt-table testing. Dr. Rey then took my blood sample.
I hope you have a great trip and medical visit. As others have noted, they can sometimes appear a bit disorganized, but I think they're highly competent, and well worth the visit.
 

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