Which drugs are effective against herpesviruses HSV, EBV, CMV, VZV, HHV6, HHV8?

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14
Does anyone know if anyone ever tried Brincidofovir for EBV? My hopes are not too high for it, but the data looked kind of promising (post #2 in this thread). About a year ago there was a group buy for Brincidofovir that was trying to get rolling, but progress was very slow, not sure if it ever happened.
 

Forummember9922

Senior Member
Messages
189
Does anyone know if anyone ever tried Brincidofovir for EBV? My hopes are not too high for it, but the data looked kind of promising (post #2 in this thread). About a year ago there was a group buy for Brincidofovir that was trying to get rolling, but progress was very slow, not sure if it ever happened.
Is there a way to attain it ? When I searched I could not find a vendor.

I am surprised more have not tried Amenalief the Japanese Pritelivir but it is quite expensive
 

Forummember9922

Senior Member
Messages
189
Source for Amenalief?
I recommend bio-japan. Keep in mind theres no testimonials at all of it having positive effects on cfs. Then again theres pretty much one testimonial. If you have lingering hsv issues could be more appropriate and theres also moderna and gsk hsv vax trials starting phase 1 within months
 
Messages
20
In vitro testing gives us some hints:

According to a 2019 review:
  • Valtrex/Valacyclovir (active ingredient is acyclovir) should work best for HSV and VZV, and is only partially effective against EBV and CMV.
  • Valcyte/Valganciclovir (active ingredient is ganciclovir) should work best for HSV, VZV, EBV, CMV, but is only partially effective against HHV6 or HHV8.
  • Famvir/Famciclovir (active ingredient is penciclovir) was not included in this 2019 review for some reason.
However, this 2019 review was mainly based on in vitro studies, and does not take into account dosage and dosing frequency.

In the below graph, Valtrex/Valacyclovir is represented by "ACV" (an abbreviation of acyclovir) and Valcyte/Valganciclovir is represented by "GCV" (an abbreviation of ganciclovir). ("BCV" stands for Brincidofovir, a drug approved only for smallpox.)

View attachment 47502

Reference:
https://www.sciencedirect.com/science/article/pii/S0166354218306570?via=ihub
Thank you so much for this. So my wife got CFS/ME after getting mono/EBV infection about 16 years ago. We did titers and tests a year ago and it shows that she has a history of infection with EBV and CMV and also HHV6. But none area currently reactivated. However, her symptoms are still severe. (IGG positive but IGM is not) Do you know if there are anyone who gets benefits from these even if IGM is negative? Could a very low level of the virus in the body continues to trigger autoimmune response but not enough to be detected by IGM?
 

Tammy

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New Mexico
Thank you so much for this. So my wife got CFS/ME after getting mono/EBV infection about 16 years ago. We did titers and tests a year ago and it shows that she has a history of infection with EBV and CMV and also HHV6. But none area currently reactivated. However, her symptoms are still severe. (IGG positive but IGM is not) Do you know if there are anyone who gets benefits from these even if IGM is negative? Could a very low level of the virus in the body continues to trigger autoimmune response but not enough to be detected by IGM?
Tests for EBV can be elusive and herein lies a big medical blunder. EBV can hide deep in the tissues, organs and central nervous system where it cannot be picked up in tests. The virus can most definitely keep causing problems despite what the tests say.
 

heapsreal

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Thank you so much for this. So my wife got CFS/ME after getting mono/EBV infection about 16 years ago. We did titers and tests a year ago and it shows that she has a history of infection with EBV and CMV and also HHV6. But none area currently reactivated. However, her symptoms are still severe. (IGG positive but IGM is not) Do you know if there are anyone who gets benefits from these even if IGM is negative? Could a very low level of the virus in the body continues to trigger autoimmune response but not enough to be detected by IGM?

It won't say a specific virus is active but if you get a lymphocyte subset test done, it is common to see a high cd8 t cell count in active ebv and other herpes viruses. So it can give you a clue that ebv is possibly active. With antiviral treatment, if it's a herpes virus, you will see the cd8 t cell count go down to a normal range which can take a few months or longer, atleast trending down.
 
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Treeman

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840
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York, England
I thought I would offer some of my experiences to this thread.

I have been diagnosed with ME CFS and pan-hypogammaglobulinemia, low IgG, IgM and IgA. I have been on both acaclovir and valciclovir as a prophylactic but have still had a constant rash on the neck which was originally diagnosed as shingles. I recently tried famicilovir for 10 days and the infection got worse.

My immunologist has eventually agreed to a biopsy to try and discover the infection. He thinks it could be HSV1 or shingles.

What I've discovered is that shingles (or what ever my persistent infection is) can become resistant to acaclovir, valciclovir and probably famicilovir. Possibly other infections it's designed for too?

I'm also on immunoglobulin therapy and this did show signs of controling the infection and I started to feel better with a little more energy after about 4 months. However I then caught an infection and 6 months later still haven't recovered. The obvious thing to conclude is that it was possibly a COVID 19 variant, but I never tested it.

I started a course of cimetidine 20 days ago, but this shows no signs of improvement in my infection and general health.

I've also been able to get hold of (or at least it should be in the post soon) 14 days of Zostex, but reading through the information on this, it's best administered at the beginning of the infection and not in my case after years of it being active.

I'm in the UK with the NHS and the wait for an appointment is approximately 6 months and then there will be a further wait for the biopsy. So I won't have any answers soon.
 

ruben

Senior Member
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327
Hello there. You say you're in UK which I am too. What type of specialist are you seeing may I ask? Thanks in advance.
 

Treeman

Senior Member
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840
Location
York, England
Hello there. You say you're in UK which I am too. What type of specialist are you seeing may I ask? Thanks in advance.

I'm a patient with immunology. They have sent me to infectious diseases and rheumatology (both as usefull as a plastic frying pan). I'm now being referred to dermatology due to the infection on the skin.
 

Learner1

Senior Member
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6,311
Location
Pacific Northwest
Thank you so much for this. So my wife got CFS/ME after getting mono/EBV infection about 16 years ago. We did titers and tests a year ago and it shows that she has a history of infection with EBV and CMV and also HHV6. But none area currently reactivated. However, her symptoms are still severe. (IGG positive but IGM is not) Do you know if there are anyone who gets benefits from these even if IGM is negative? Could a very low level of the virus in the body continues to trigger autoimmune response but not enough to be detected by IGM?
Antibody tests can be pretty useless. I had several doctors miss HHV6 and EBV because they did antibody tests. Doing quantitative PCR tests showed I was positive for both, and getting on valganciclovir gave me my life back.
 

Dude

Senior Member
Messages
212
Antibody tests can be pretty useless. I had several doctors miss HHV6 and EBV because they did antibody tests. Doing quantitative PCR tests showed I was positive for both, and getting on valganciclovir gave me my life back.
Sorry if this has been asked before, but how long did it take before you noticed something? What was your dose?
I'm just asking because I want to test it too.
 

Learner1

Senior Member
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6,311
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Pacific Northwest
Sorry if this has been asked before, but how long did it take before you noticed something? What was your dose?
I'm just asking because I want to test it too.
Sorry, not sure what you're asking.

I tracked my illness and recovery with an Oura ring and lab tests.

Most ME/CFS seems to be related to untamed infections which cause mitochondrial fragmentation and depletion of nutrients which leads to a cascade of secondary and tertiary problems, along with a dysfunctional immune system, one that doesn't appropriately fight infections while ongoing smoldering infections trigger all sorts of autoimmunity in a we au that differs from patient to patient.

Rather than expecting that taking ng a single pill is going to lead to recovery, it's more important to support the immune system, tackle the infections with appropriate treatments, and calm the autoimmunity while supporting the mitochondria and body with nutrients to encourage recovery.
 
Messages
20
Antibody tests can be pretty useless. I had several doctors miss HHV6 and EBV because they did antibody tests. Doing quantitative PCR tests showed I was positive for both, and getting on valganciclovir gave me my life back.
What dose of valganciclovir did you take ? Did you titrate up to it? How long until you started to see improvements? Thank you!
 

Violeta

Senior Member
Messages
3,163
This article is about a botanical topical used to treat shingles.

https://journals.lww.com/md-cases/f...tment_of_herpes_zoster_with_botanical.13.aspx

I can't find the product, but here's some information about it.
"... the patient was prescribed a commercially available botanical formulation (Aviratek Biomedical Solutions) of ethanol and/or glycerin extracted Hypericum perforatum (2.5%), Lavandula officinalis (10%), Glycyrrhiza glabra (2.5%), Melissa officinalis (6%), Eleutherococcus senticosus (4%) and mixed species of Sarracenia (25%) suspended in a Versabase gel (50%). The Versabase gel was composed of allantoin, aloe vera, ammonium acryloyldimethyltaurate, ethylenediaminetetraacetic acid and methylchloroisothiazolinone."
 
Messages
74
Does anyone know if anyone ever tried Brincidofovir for EBV? My hopes are not too high for it, but the data looked kind of promising (post #2 in this thread). About a year ago there was a group buy for Brincidofovir that was trying to get rolling, but progress was very slow, not sure if it ever happened.
Is there any news on the group buying Brincidofovir? I haven't been able to find the drug online. I'm desperate to try it
 

cfs since 1998

Senior Member
Messages
759
Is there any news on the group buying Brincidofovir? I haven't been able to find the drug online. I'm desperate to try it
You could try IV cidofovir, or would you have trouble convincing a doctor to prescribe it? I believe Dr. Peterson has used it.

You could also consider artesunate or tenofovir.

Valganciclovir (Valcyte) inhibits EBV:
https://pubmed.ncbi.nlm.nih.gov/28838145/

The side effects of brincidofovir are scary enough that I wouldn't want to try it without a trustworthy doctor prescribing it for me. Black box warning for risk of sudden death with prolonged use.

On another note, there might be a way to monitor if an antiviral is "working" by monitoring your monocyte count. I got fairly significant monocyte drop after taking only 500mg/day of valtrex for a few months, unfortunately stopped because even at the lower dose it still made my SFN worse. That was my 3rd try with this drug. I'm almost ready to give up and try cyclophosphamide.
 
Messages
74
You could try IV cidofovir, or would you have trouble convincing a doctor to prescribe it? I believe Dr. Peterson has used it.

You could also consider artesunate or tenofovir.

Valganciclovir (Valcyte) inhibits EBV:
https://pubmed.ncbi.nlm.nih.gov/28838145/

The side effects of brincidofovir are scary enough that I wouldn't want to try it without a trustworthy doctor prescribing it for me. Black box warning for risk of sudden death with prolonged use.

On another note, there might be a way to monitor if an antiviral is "working" by monitoring your monocyte count. I got fairly significant monocyte drop after taking only 500mg/day of valtrex for a few months, unfortunately stopped because even at the lower dose it still made my SFN worse. That was my 3rd try with this drug. I'm almost ready to give up and try cyclophosphamide.
Thanks. I'm trying to target suspected persistent adenovirus.
 
Messages
74
You could try IV cidofovir, or would you have trouble convincing a doctor to prescribe it? I believe Dr. Peterson has used it.

You could also consider artesunate or tenofovir.

Valganciclovir (Valcyte) inhibits EBV:
https://pubmed.ncbi.nlm.nih.gov/28838145/

The side effects of brincidofovir are scary enough that I wouldn't want to try it without a trustworthy doctor prescribing it for me. Black box warning for risk of sudden death with prolonged use.

On another note, there might be a way to monitor if an antiviral is "working" by monitoring your monocyte count. I got fairly significant monocyte drop after taking only 500mg/day of valtrex for a few months, unfortunately stopped because even at the lower dose it still made my SFN worse. That was my 3rd try with this drug. I'm almost ready to give up and try cyclophosphamide.
Good to know about the black box warning! I hope they figure out a way to make the cidofovir drugs safer.

Valtrex and famvir made my SFN worse so I suspect Valcyte might.
 

cfs since 1998

Senior Member
Messages
759
Good to know about the black box warning! I hope they figure out a way to make the cidofovir drugs safer.

Valtrex and famvir made my SFN worse so I suspect Valcyte might.
Same, I haven't tried Valcyte or Famvir so I'm still trying to figure out how and why Valtrex made my SFN worse. It isn't a known side effect but now there's two of us here.

David Systrom believes most ME/CFS patients have SFN so it's presumably autoimmune. So are the antivirals resensitizing our immune system, or is it something else.
 
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