How long before I start to see improvment on Valtrex?

[ebethc]

I have been on Valtrex for a while under Dr Dantini, but he won't do Valcyte. Which OLE brand do you get? how much do you take?

I was a patient of Doc Lerner, we were going to start on Valcyte, but he passed away, so I have only done Valtrex for about 2 year. It did help enormously for EBV, but I have been on the decline for about year.
Thank-you for your reply.

I take designs for health OLE....

BTW, I asked my doctor about OLE impacting thyroid health, and she said she didn't believe that it was true (ie, may have been a poorly designed study or something...)

Also, Valcyte is usually for CMV or HHV6, which, I believe, are stronger than EBV. My impression is that OLE is a sub for Valtrex, rx'ed for EBV, HHV1, HHV2, HHV3

 

[Basilico]

I have been on Valtrex for a while under Dr Dantini, but he won't do Valcyte. Which OLE brand do you get? how much do you take?

I was a patient of Doc Lerner, we were going to start on Valcyte, but he passed away, so I have only done Valtrex for about 2 year. It did help enormously for EBV, but I have been on the decline for about year.
Thank-you for your reply.

I also saw Dantini (I'm in central FL) but after being on Valtrex for months with no improvement, he didn't have anything else to offer and I eventually got the feeling he was another of those 'I have the cure' docs with a limited bag of tricks that don't really work. Do you feel like overall you have been doing well on with his treatment? You mentioned Valtrex helped with EBV, but how have you responded overall to the Valtrex treatment? Do you generally feel like he's made a significant improvement in your CFS?

 

[flsun13]

I also saw Dantini (I'm in central FL) but after being on Valtrex for months with no improvement, he didn't have anything else to offer and I eventually got the feeling he was another of those 'I have the cure' docs with a limited bag of tricks that don't really work. Do you feel like overall you have been doing well on with his treatment? You mentioned Valtrex helped with EBV, but how have you responded overall to the Valtrex treatment? Do you generally feel like he's made a significant improvement in your CFS?

Hi Basilico,
I also live in Central Florida, Lakeland. To be honest. When I first started on valtrex, I improved enormously, that was when I was under Dr. Lerner's care (I was travelling back and forth from Detroit). My CMV levels did increase while I was on Valtrex, and Dr. Lerner was going to start Valcyte, but we never did because he passed away. I started seeing Dr. Dantini after Dr. Lener's death, and he kept me on Valtrex, but I have slowly deteriorated while on his care for the past year. I have the suspicion that my CMV levels have increased, and henceforth my deterioration in health, but as Dantini does not check anything, I can't be sure.
I also feel Dr. Dantini while good intentions, he doesn't check your levels of anything and is ok seeing you a couple times a year. I feel that he has the attitude of if you improve good, otherwise, oh well, I am not trying anything else.

Are you still seeing Dantini, or have you found someone else? If you have, please feel free to share here or on a private message =)

 

[Basilico]

Are you still seeing Dantini, or have you found someone else? If you have, please feel free to share here or on a private message =)

In my first (and only) appt with Dantini he told me that he had a 98% success rate. That triggered some huge red flags, because if there was any doctor who could cure that many CFS patients, his name would have been all over this board.

Neither I nor my husband are seeing Dantini (or any other 'CFS doctor' anymore. At this point, based on both our experiences and from what we've read of others' experiences, we decided not to waste our time and money on "CFS specialists" because I honestly don't believe they can help most people. I think there are a select few people who they can help (for example, people who have legitimate underlying infections, but I don't believe that's everyone and I no longer believe it applies to us). So we've embarked on our own journey which involves a lot of N=1 experiments with out of the box stuff. (Obviously taking as many precautions as possible, and getting bloodwork done to keep tabs on what's happening). We're pretty sure that if there is a cure, it's up to us to find it. If we ever do find something that works, everyone here will know about it!

I'm actually about to start an immune-modulating medication for a different health issue that has actually been used in Germany and the Netherlands for 30+ years to treat psoriasis, has a fairly good safety profile, and is generally well-tolerated. The only reason I'm trying it is because I read some research about how it greatly raises glutathione levels, which is something that many CFS folks have issue with. If my experience is a positive one, then my husband plans to take a similar chemical in the form of a supplement that is available on Amazon (which is less likely to have some of the side-effects of the prescription version and is MUCH cheaper, though I think it's a bit less effective). If either of these treatment options seem to be causing improvements, then I'll be sure to post more information about what we're taking specifically and how we responding, but I don't want to jump the gun in case it turns out to be another wash-out like so many of the things we've tried.