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Valtrex -> valcyte or famvir for HHV-6 and cmv

JasonUT

Senior Member
Messages
303
Hello,
I have elevated ebv early Antigen titers; therefore, my doctor has rx'd valtrex 1 gm BID. I have only been taking it 4 days at rx'd dosage. However, labs for hhv-6 and CMV just came in showing high igg titers. Doctor is considering switching me to valcyte.
Questions:
  1. Does valcyte work for EBV?
  2. Does famvir work for HHV-6?
  3. Does famvir work for CMV?
  4. Does valtrex work for CMV?
  5. Does valtrex work for hhv-6?
Any scientific papers, studies, or research to support the above would be greatly appreciated. Thanks for your time, knowledge, and opinions.
 

ebethc

Senior Member
Messages
1,901
Hello,
I have elevated ebv early Antigen titers; therefore, my doctor has rx'd valtrex 1 gm BID. I have only been taking it 4 days at rx'd dosage. However, labs for hhv-6 and CMV just came in showing high igg titers. Doctor is considering switching me to valcyte.
Questions:
  1. Does valcyte work for EBV?
  2. Does famvir work for HHV-6?
  3. Does famvir work for CMV?
  4. Does valtrex work for CMV?
  5. Does valtrex work for hhv-6?
Any scientific papers, studies, or research to support the above would be greatly appreciated. Thanks for your time, knowledge, and opinions.

Here's the Antiviral drugs summary from Hip's Roadmap
https://mecfsroadmap.altervista.org/#antiviral-drugs-summary

the links in your signature are broken; if you have the time to fix, I would be interested in the content :)
 

gbells

Improved ME from 2 to 6
Messages
1,434
Location
Eastern NC USA
Antiviral drugs initially showed promise with Dr. Martin Lerner but didn't show good results in Dr. Montoya's controlled study. That is why they weren't approved to treat CFS. So doctor's won't recommend them.
 

Hip

Senior Member
Messages
17,483
Dr. Martin Lerner but didn't show good results in Dr. Montoya's controlled study.

But in ME/CFS, antivirals only begin to start showing benefits at the 4 month stage, and they take at least a year for the full benefits to manifest. This is what Dr Lerner found.

The trouble with Montoya's controlled study is that it only lasted 6 months, which is too short a time for any substantial benefit to take manifest (even so, Montoya's study did show some positive effects at the 6 month stage, but it's unfortunate he stopped there).

The other flaw with Montoya's study is that he did not check for other infections, such as enterovirus.

If an ME/CFS patient has both herpesvirus and enterovirus infections, then they are probably not going to do as well as a patient who only has herpesvirus, because Valcyte only works for herpesviruses, but not enterovirus.

So to do a proper Valcyte study, you first want to make sure you run your study for 12 months at least, and you also should ensure your cohort only includes herpesvirus patients, but not enterovirus patients.

Many ME/CFS patients test for herpesviruses, but not enteroviruses, so they only see half the picture.
 
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gbells

Improved ME from 2 to 6
Messages
1,434
Location
Eastern NC USA
@Hip more improvement should have been seen at 6 months regardless. I don't fault Montoya for pulling the plug or hold any hope out that they work. The idea behind antivirals is that they freeze the viral replication of the infected cells. However, according to Lerner's theory the competing herpes viruses block each others reproduction. So why would we care about their reproduction if its blocked? Elevated Nf-kB from viral infections inhibits mitochondria but the viruses can still function so energy production shouldn't change.

I like the chemotherapy approach of killing virally infected cells to stop the energy drain. It makes more sense.
 

Hip

Senior Member
Messages
17,483
Have you read this report? Do you think this has any impact on your "Anti-virals Drug Summary"?

https://www.clinicaltherapeutics.com/article/S0149-2918(18)30311-4/pdf

All the antiviral drugs detailed in that document are already in use by ME/CFS doctors. There are some new drugs mentioned in the research pipeline, but those are not available yet.

Basically there is not much choice: if you have EBV and no other viruses, then you can use Valtrex. But if you have other active herpesviruses, or more than one active herpesvirus, then Valtrex will not help, as it does not work for CMV or HHV-6, only EBV. In this case, Valcyte is appropriate, as this works for EBV, CMV, HHV-6, VZV and HSV.

If you also have active enterovirus infections (coxsackievirus B or echovirus), then Valcyte will not help those. Dr Chia uses oxymatrine and tenofovir for enterovirus. Probably around half of ME/CFS cases are linked to active enterovirus.


Dr Lerner theorized that the herpesvirus infections in ME/CFS patients are not regular productive infections, but what are known as abortive infections. If this is the case, it could explain why current antivirals are not particularly good at treating ME/CFS, because current antivirals cannot directly target abortive infections.
 

gbells

Improved ME from 2 to 6
Messages
1,434
Location
Eastern NC USA
Most people recover from enterovirus within 10 days and there isn't any data showing that it remains chronic by itself like the herpes viruses so it looks to be only an opportunistic infection after herpes virus infection. I don't think it has much significance in CFS.
 

Hip

Senior Member
Messages
17,483
Most people recover from enterovirus within 10 days and there isn't any data showing that it remains chronic

We have had this discussion before, when I provided you with that data showing that enterovirus can form chronic infections (perhaps you did not see it?) The evidence for chronic enterovirus in ME/CFS is actually stronger than the evidence for herpesvirus, because it is PCR evidence.
 
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heapsreal

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Messages
9,900
Location
australia (brisbane)
Hello,
I have elevated ebv early Antigen titers; therefore, my doctor has rx'd valtrex 1 gm BID. I have only been taking it 4 days at rx'd dosage. However, labs for hhv-6 and CMV just came in showing high igg titers. Doctor is considering switching me to valcyte.
Questions:
  1. Does valcyte work for EBV?
  2. Does famvir work for HHV-6?
  3. Does famvir work for CMV?
  4. Does valtrex work for CMV?
  5. Does valtrex work for hhv-6?
Any scientific papers, studies, or research to support the above would be greatly appreciated. Thanks for your time, knowledge, and opinions.

I cant get viral titres tested in Australia but the nextbest thing i could measure were T cells and cd8 Tcells are commonly high in herpes viruses. Valtrex didnt seem to help symptoms or labs. Famvir helped symptoms and labs but its a long term thing to see results ie months. Gold standard for cmv and hhv6 is valcyte. 6 months of valcyte seems to be where many improvements stop on valcyte and a good time to stop and avoid side effects. Then ideally move to famvir for a significant amount of time.

The doses used by Dr Lerner are very agressive compared to drs in Australia. So Im on famvir 500mg twice a day.
 

Learner1

Senior Member
Messages
6,286
Location
Pacific Northwest
Hello,
I have elevated ebv early Antigen titers; therefore, my doctor has rx'd valtrex 1 gm BID. I have only been taking it 4 days at rx'd dosage. However, labs for hhv-6 and CMV just came in showing high igg titers. Doctor is considering switching me to valcyte.
Questions:
  1. Does valcyte work for EBV?
  2. Does famvir work for HHV-6?
  3. Does famvir work for CMV?
  4. Does valtrex work for CMV?
  5. Does valtrex work for hhv-6?
Any scientific papers, studies, or research to support the above would be greatly appreciated. Thanks for your time, knowledge, and opinions.
I was on Valcyte for 20 months until I had 4 negative EBV PCRs. My doctor was an AIDS doctor for many years and used to chronic infections. I had EBV, CMV, HHV6, HSV2 and ZVZ. My brain fog cleared within the first 30 days and brain function continued to improve after that. He put me on 2 450 pills twice s day for the first year, then 1 pill twice daily after that.

The article posted above is excellent - best one I've seen.
 

JasonUT

Senior Member
Messages
303
I was on Valcyte for 20 months until I had 4 negative EBV PCRs. My doctor was an AIDS doctor for many years and used to chronic infections. I had EBV, CMV, HHV6, HSV2 and ZVZ. My brain fog cleared within the first 30 days and brain function continued to improve after that. He put me on 2 450 pills twice s day for the first year, then 1 pill twice daily after that.

The article posted above is excellent - best one I've seen.

I am glad to hear that valcyte helped you. Are you still seeing the benefits? How long have you been off valcyte?

Did you experience any signs of neutropenia, lowered neutrophil count, or bone marrow suppression?

I only weight 125 lbs. What might be the optimal dose of valcyte to avoid side effects?
 

gbells

Improved ME from 2 to 6
Messages
1,434
Location
Eastern NC USA
We have had this discussion before, when I provided you with that data showing that enterovirus can form chronic infections (perhaps you did not see it?) The evidence for chronic enterovirus in ME/CFS is actually stronger than the evidence for herpesvirus, because it is PCR evidence.

Can you repost?
 

gbells

Improved ME from 2 to 6
Messages
1,434
Location
Eastern NC USA
I looked up the enteroviruses. I actually had a pos antobody test myself for coxsackie B types 1 and 6. I think the fact that some people are having them just indicates they have another infection that is blocking apoptosis and the virus is colonizing immortalized cells rather than being the cause of the problem. Enteroviruses can't block apoptosis on their own so if people were normal (uninfected with herpesviruses blocking apoptosis) they would recover.
 

gbells

Improved ME from 2 to 6
Messages
1,434
Location
Eastern NC USA
Coxsackie enterovirus actually causes apoptosis so it should make it easier to kill the infected cells if you can remove the herpesvirus apoptosis blocks (Nf-KB, caspase, etc).
 

Learner1

Senior Member
Messages
6,286
Location
Pacific Northwest
I am glad to hear that valcyte helped you. Are you still seeing the benefits? How long have you been off valcyte?

Did you experience any signs of neutropenia, lowered neutrophil count, or bone marrow suppression?

I only weight 125 lbs. What might be the optimal dose of valcyte to avoid side effects?
I'm still seeing the benefits and have been off it a year. No neutopenia - from What I understand, the risk for that is for cancer patients and AIDS patients. My doctor did have me do " safety labs " every month or so, consisting of a CBC and CMP but really, I had no problems or any side effects.

I was on 1.8g a day - I'm 5'10" and weigh 150lbs.
 

hunter1899

Senior Member
Messages
152
I'm still seeing the benefits and have been off it a year. No neutopenia - from What I understand, the risk for that is for cancer patients and AIDS patients. My doctor did have me do " safety labs " every month or so, consisting of a CBC and CMP but really, I had no problems or any side effects.

I was on 1.8g a day - I'm 5'10" and weigh 150lbs.

What about the possibility that Valcyte possibly causes cancer? This has always worried me and made me hesitant to try it!
 

hunter1899

Senior Member
Messages
152
I cant get viral titres tested in Australia but the nextbest thing i could measure were T cells and cd8 Tcells are commonly high in herpes viruses. Valtrex didnt seem to help symptoms or labs. Famvir helped symptoms and labs but its a long term thing to see results ie months. Gold standard for cmv and hhv6 is valcyte. 6 months of valcyte seems to be where many improvements stop on valcyte and a good time to stop and avoid side effects. Then ideally move to famvir for a significant amount of time.

The doses used by Dr Lerner are very agressive compared to drs in Australia. So Im on famvir 500mg twice a day.

Wanted to touch base and see how the famvir was working for you? Seeing improvements?
 
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Learner1

Senior Member
Messages
6,286
Location
Pacific Northwest
What about the possibility that Valcyte possibly causes cancer? This has always worried me and made me hesitant to try it!
EBV causes cancer and I'd imagine other herpes family viruses do, too. They also trigger multiple debilitating autoimmune conditions and can cause mitochondrial fragmentation.

In an interview, Montoya noted that Valcyte has gotten a bad reputation as it's been used on AIDS and cancer and transplant patients who are fragile to begin with. Most healthy people would. never be prescribed it.

It is prudent to be monitored on it, and it can have effects on fertility, but we all need to weigh the risks and benefits.

I'm a stage 3 cancer survivor, and no one, even my functional medicine doctors seemed concerned about the cancer-causing potential of Valcyte, though I was already doing a lot of cancer fighting things and all of the "natural" antiviral treatments hadn't worked, not necessarily because they're bad, but more because my immune system wasn't working properly.