• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Should I push for Valcyte?

nryanh94

Senior Member
Messages
165
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
 

Attachments

  • 7090BD50-9DE0-459F-A946-DBA9358DF15B.png
    7090BD50-9DE0-459F-A946-DBA9358DF15B.png
    562.2 KB · Views: 69

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
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
47
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
Messages
382
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 ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
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.
 
Messages
47
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.
 

edawg81

Senior Member
Messages
142
Location
Upstate, NY
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
 
Messages
12
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
Thanks for the link!
I have an old CMV quantitative that is 117 (0-13.9 E/ml). And of course positive EBV IgG, EBV EA and EBNA. Been on Valacyclovir now for 3 months but not experiencing any significant changes. I understand one needs to be patient. Also, I weigh 110kg and am taking 1g 6 hourly, so I could need to increase the dose to 1.5g every 6 hours according to the Lerner protocol. Just afraid of side-effects, but it seems to be fine.
My main concern with Valganciclovir is financial, but if it could make one better, I would almost sell a kidney to be able to get the treatment then! Although I would probably need the renal function...
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
If cost is an issue (which for many of us is) then valcyte and valtrex won't be affordable because you have to take them indefinitely. These viruses are chronic DNA viruses that are part of the cells so these drugs that stop replication will eventually wear off and leave you back where you started.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
I don't get the rationale for the drugs since it looks like replication gets blocked anyway either by dual viruses or antibodies. For a lot of ME patients its hard to detect viruses with PCR DNA tests, they just have antibodies. So the only way they spread is slowly by cell division.

I think this was the Montoya study that doomed ME antiviral drug research. https://pubmed.ncbi.nlm.nih.gov/23959519/

This disease is a tough one but medicine isn't that good with underfunded orphan diseases, look at autoimmune diseases. Took them decades to develop decent lupus drugs.

There is a transcript of pharma execs complaining that curing Hepatitis C wasn't profitable enough to develop more cures. They need lifetime treatments to really make money.
 
Last edited:
Messages
12
Messages
12
If cost is an issue (which for many of us is) then valcyte and valtrex won't be affordable because you have to take them indefinitely. These viruses are chronic DNA viruses that are part of the cells so these drugs that stop replication will eventually wear off and leave you back where you started.
Hi GBells - I agree, but it would at least be interesting to see how one responds to treatment, if you are able to benefit from reduction in viral activity/viral suppression, and hopefully that will provide hope as to cause of ME/CFS, and make it easier to focus all your energy on that. These patents also don't last forever, so at some point the cost will come down.
I see that you are using some herbs as antivirals? Do you have any recommendations as to more natural and affordable options to treat EBV and CMV? Cheers. T
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
Hi GBells - I agree, but it would at least be interesting to see how one responds to treatment, if you are able to benefit from reduction in viral activity/viral suppression, and hopefully that will provide hope as to cause of ME/CFS, and make it easier to focus all your energy on that. These patents also don't last forever, so at some point the cost will come down.
I see that you are using some herbs as antivirals? Do you have any recommendations as to more natural and affordable options to treat EBV and CMV? Cheers. T

I'm doing a complicated regimen involving diet, OTC, supplements and rx pain control. It's still in testing. If it pans out I'll release it to the masses. Been working on different apoptosis supplements since 2009. First rule of apoptosis, don't take things that block it like strong antioxidants (vit E, alpha lipoic acid), most hypertensive drugs and bioflavenoids. Some things that aren't recommended are ashwaghanda, oxymatrine, olive leaf extract, nutramedix herbal tinctures, PQQ and quercitin.
 
Last edited:

sometexan84

Senior Member
Messages
1,229
Is there anything else you are doing for antiviral tx?
Well, recently I started on N-Acetyl Cysteine (acetylcysteine) for Coxsackievirus B3. I think it's working. But I don't want to speculate until I get new labs back. I'm very eagerly awaiting some test results I had done like over a week ago. I don't want to say anything definitive about any of the stuff I've been on though, until later. I want to see the lab data, instead of just going off how I feel.

Valtrex is the exception though. I know you and I started it around the same time. I'm quite confident in this for my EBV treatment. Cause, aside from feeling good, I've actually got to see the EBV titers going down. Slowly, but it is working.

If I base calculations off of this ....

6 years of 500 mg of valacyclovir once each day to eradicate 99% of EBV

That means I'll need to be on Valtrex for at least another 1year or more to clear out my EBV, based on my current levels and the speed at which my titers have been decreasing at my current dose.

But again, my Valtrex dose is lower than Dr Lerners protocol. I do 1.5 - 2 gm/day (500mg 3-4 times/day). Whereas Dr Lerner did 4 grams/day.

Do you weigh over 175lb? Is that why you're doing the 1.5grams?
 

livinglighter

Senior Member
Messages
379
If cost is an issue (which for many of us is) then valcyte and valtrex won't be affordable because you have to take them indefinitely. These viruses are chronic DNA viruses that are part of the cells so these drugs that stop replication will eventually wear off and leave you back where you started.

Now it makes sense why I relapsed after the high dose of vitamin D, if that was what caused my remission.