Article: A Fibromyalgia Doctor Steps Out: Dr. Dantini on Treating Fibromyalgia and CFS with Antivira

Article: A Fibromyalgia Doctor Steps Out: Dr. Dantini on Treating Fibromyalgia and CF

You can view the page at http://forums.phoenixrising.me/content.php?388-A-Fibromyalgia-Doctor-Steps-Out-Dr.-Dantini-Treating-Fibromyalgia-and-CFS-ME-CFS-with-Antivirals

 

I am just reading this for the first time and I'm fascinated by the fact that very specific antivirals seem to work for some, and not for others. I have developed such a hyper-sensitivity to medications that the idea of trying a new antiviral actually scares the hell out of me. I have tried more than one a.v. over the years, without success, and I don't think I would tolerate them today. I wish researchers could define WHAT exactily the a.v. is treating. Thanks to all for your stories and feedback.

 

Treatment with antivirals

I am just reading this for the first time and I'm fascinated by the fact that very specific antivirals seem to work for some, and not for others. I have developed such a hyper-sensitivity to medications that the idea of trying a new antiviral actually scares the hell out of me. I have tried more than one a.v. over the years, without success, and I don't think I would tolerate them today. I wish researchers could define WHAT exactily the a.v. is treating. Thanks to all for your stories and feedback.

The notion of treating ME/CFS with antivirals is not new. The dismal success rate is also unfortunately not new. The only ray of hope was in the Montoya trial of Valcyte against high titer HHV6 (1:640 +) . The other antivirals Valtrex, Famvir, Zovirax, acyclovir etc show only anecdotal results.
The Kutapressin/Nexavir/Hepapressin trials used by various researchers Chaney/Komaroff/Levine/Lapp/Peterson/Enlander has shown some response.
Now we are embarking on a new trial with GcMaf which has shown some response in ME/CFS by acting on the immune system.

Derek Enlander MD
New York

 

I think the success on antivirals depends on what bugs you have, also its no cure but also i dont know of a cfs cure but it can help improve your function. On dr lerners energy index score i would have been a 4 or 5 out of 10 and now im a 7-8 out of 10. I have also tested positive to cmv,ebv and neg to hhv6. Blood tests have shown an improvement with my symptom improvement. Also in Lerners study, there is a high failure rate of people who have other co-infections, especially bacterial mycoplasma and chlamydia pneumonia, so these infections have to be addressed. One more thing i think needs to be sorted is our dysfunctional immune system, especially our NK dysfunction which can be improved with immune modulators like cycloferon, immunovir, LDN. I have only used cycloferon which has helped quite abit. SO alot of things have to be taken into consideration and i dont think there is one silver bullet, u just need a machine gun full and its improvement in your finction , not a cure or i suppose these forums wouldnt exist. Anyway i would just have a go, nothing to lose but feeling crappier(is that a word??)

cheers!!!

 

I personally went to Dr. Lerner and he told me I was a 2.5 on his scale. I don't think I'm that bad (I'd consider myself also a 4 or 5) off but, then again, maybe I am. I have had some mild success on antivirals. First was Valtrex (only 1 gram daily for 4ish months), it did do a little. I went on Famvir and went straight up in a 3 week period to probably a 7. Now I'm about 5-6 with short periods of 7. The daily crashes as I like to call them are less severe and shorter in duration. I'm coming close to the 6 week trial period my GP put me on for famvir. I'd like to continue on it longer. I also remember I have mycoplasma pneumonia and Dr. Lerner did tell me he was going to put me on some antibiotic as well.

Another quick point about Dr. Lerner. I took him as a very sincere man who knows what he's talking about. Once he looked over my bloodwork, he put his hand on my shoulder, looked me straight in the eye and something to the effect of "Give me some time and I'm positive I can get you very close to healthy, if not completely well" Of course Valcyte was on the list as well. Wish I could have followed the protocol, just couldn't afford it.

Good point about the forums heaps. I can't wait for the day when I sign on to PR and there's only one post "cfs cured, do this, recover, have a great life!"

 

I personally went to Dr. Lerner and he told me I was a 2.5 on his scale. I don't think I'm that bad (I'd consider myself also a 4 or 5) off but, then again, maybe I am. I have had some mild success on antivirals. First was Valtrex (only 1 gram daily for 4ish months), it did do a little. I went on Famvir and went straight up in a 3 week period to probably a 7. Now I'm about 5-6 with short periods of 7. The daily crashes as I like to call them are less severe and shorter in duration. I'm coming close to the 6 week trial period my GP put me on for famvir. I'd like to continue on it longer. I also remember I have mycoplasma pneumonia and Dr. Lerner did tell me he was going to put me on some antibiotic as well.

Another quick point about Dr. Lerner. I took him as a very sincere man who knows what he's talking about. Once he looked over my bloodwork, he put his hand on my shoulder, looked me straight in the eye and something to the effect of "Give me some time and I'm positive I can get you very close to healthy, if not completely well" Of course Valcyte was on the list as well. Wish I could have followed the protocol, just couldn't afford it.

Good point about the forums heaps. I can't wait for the day when I sign on to PR and there's only one post "cfs cured, do this, recover, have a great life!"

Have u tried doxycycline for mycoplasma? this with the av's might help u get over the line. I hope your doc keeps u on the av's for awhile as i think it takes time for the viruses to die out or immune system to strengthen itself to keep the little buggers down.

cheers!!!

 

You know, I think the antibiotic he wrote down on the paper was moxyfloxisomethinerrather. I'm thinking this too. Now, while my GP here is no CFS expert, he had Mono when he was in college and always suspected a viral cause or connection and also tells me he does believe cfs is real (which I can't tell you how much of a relief that is). I think he'll keep me on a maintence dose 500mgs a day instead of 3x 500mgs a day I am currently taking. He noticed the levels of m. pneumonia and told me it was a past infection (obviously), but I highly doubt he'll give me an extended course of the antibiotic of my choice. . .

Cort, we need to hit up one of those games before the playoffs are over. Maybe this weekend if you are free.