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.
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.
