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Should I push for Valcyte?

nryanh94

Senior Member
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Hi all,

Im currently in the worst flare I’ve had since my me started 3 years ago. I’ve recently had blood work and found that my EBV values have almost doubled from what they were a year ago.
My guess is this is the cause of this current flare. Should I try to push my Dr for Valcyte as she has been reluctant to prescribe it in the past? I’ve tried valtrex in the past with no benefits.

thanks
 

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gbells

Improved SEIDs from 2 to 5
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Should I try to push my Dr for Valcyte as she has been reluctant to prescribe it in the past?
I found this article that says patients with HSV 6 have shown benefit. You could have a blood test for HSV6 and try it. Perhaps your virus is resistant to the Valtrex.
 
Messages
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46
Hi all,

Im currently in the worst flare I’ve had since my me started 3 years ago. I’ve recently had blood work and found that my EBV values have almost doubled from what they were a year ago.
My guess is this is the cause of this current flare. Should I try to push my Dr for Valcyte as she has been reluctant to prescribe it in the past? I’ve tried valtrex in the past with no benefits.

thanks
Doctors are alway going to be more conservative. From all that I've read most people do not have problems with Valganciclovir. I took it for 4 months (self prescribed) and at doses as high as 2250mg (5 x 450mg pills in a day).
Order a small batch off of alldaychemist. It'ls even expensive there but will give you an idea. More broad spectrum and tends to be more potent against the herpesviruses valacyclovir treats.
 

Badpack

Senior Member
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I wouldn’t do it tbh. How many ppl have tried it by now and how many success stories did you read about it? It’s like a 100 to 1 ratio. One friend of mine even got way worse on it. Better to push for treatments that didn’t have been done 100 times before with the same bad results.
 

gbells

Improved SEIDs from 2 to 5
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I spoke to a pharmacist about it. Normally our own antibodies handle HHV6 so the only people who benefit are those with very T-cell count (severely immunosuppressed). I think this is why it doesn't help most.
 
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I wouldn’t do it tbh. How many ppl have tried it by now and how many success stories did you read about it? It’s like a 100 to 1 ratio. One friend of mine even got way worse on it. Better to push for treatments that didn’t have been done 100 times before with the same bad results.
It's hit or miss, they are slowly starting to figure out ME/CFS. Valcyte has had greater success overall than Valtrex because it's more broad spectrum.

I would say the person that has any kind of bad experience with Valcyte is rare in contrast to a positive or zero change.

Most people that get better and find something that works disappear and get on with their lives. I still make posts as I recall how bad it can be. There are still days that are bad but they are getting less and less common and it's something I don't have to plan around the illness.

I would suggest OP order through a site like ADC when they have Valganciclovir (Valgan) in stock and order a small sample to see how they respond.

Try a bunch of stuff until you find something that works. To anyone who has ever truly experienced ME/CFS it really is a true living hell; that's why I always make these antiviral recommendations.
 
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Here is my advice about valcyte, this is not medical advice im not a dr. I’m just speaking from my own experiences with it

If you feel you can tolerate a med trial, sure go for it (It could make you better or worse). I think its indicated for high igg of cmv and hhv6 (learner protocol).

If you do start valcyte have regular blood tests.
If your sensitive to medication (like me) ask to start with the oral solution and titrate up to the 450mg pill.

My experience, I felt more volatility in my ME/CFS symptoms on valcyte. I could never tirate up to the full 450mg dose. I could only tolerate 250mg oral solution (but I dont blame the valcyte, I blame the ME). Over a period of over a year my condition continued to deteriorate so I stopped the trial. It has helped a number of people I know and others have their ME become worse.

If you want some material to show your dr, you can show them this:

http://www.cfstreatmentguide.com/blog/dr-martin-lerners-treatment-protocol-for-mecfs