Antivirals as ME/CFS or Long Covid treatments (e.g. valacyclovir, valgancyclovir, amantadine)
- Thread starter Lidia Thompson
- Start date
I received a copy of the study on aciclovir in HHV-6 from 1989 by a French team of researchers under the lead of Henri Agut.
Agut H, Huraux J-M, Collandre H, Montagnier L. Susceptibility of human herpesvirus 6 to acyclovir and ganciclovir. Lancet 2: 626, 1989
They write that they replicated an attempt by Dr Russler and colleagues (Aug 12, p 382) – I think that this means that it was also published in The Lancet – and had slightly different results.
According to Agut Dr. Russler claimed that from the level of activity that he had observed in vitro it could be inferred that it must have a good activity against HHV-6 in vivo when used in high doses. I think what they wanted to say with that was that if the very good drugs against HHV-6 like foscarnet were not available doctors should well try aciclovir – instead of just let the patient die.
Agut and team observed less activity of aciclovir against HHV-6 in vitro. Because of that and some reflections on aciclovir's activity against CMV and yet another herpes virus that I can't follow they conclude that they think aciclovir might not have activity against HHV-6.
Agut made their attempts with an HHV-6 kf strain. Russler used another one. HHV-6a and HHV-6b became two different viruses officially only in 2019.
I think that we actually don't know whether aciclovir has activity against HHV-6b in vivo and whether it depends on high doses.
I am not taking very high doses. I figured out that 4x400mg a day are enough to suppress flares fully if I keep activities reasonably low. In higher doses I feel that I can do more. This is also an observation that patient from Germany from my post above describes from her experience of using aciclovir against ME. She takes a higher dose and she goes to work – I think full time. She speaks of 3x1000mg/d.
What's interesting is that she writes that when she goes on the drug again after a couple of days off – because of the side effects – it takes up to three days until the drug unfolds a power big enough to suppress her flare fully and she adds that the effect sets in faster the more she rests during that time.
I thought it through and read some advice for folks on aciclovir against shingles who are recommended to rest and do the same now. I want to be cautios especially when I don't have a specialist to accompany my aciclovir use yet.
It's interesting that she observes that the drug takes three days until full activity while I observe one hour again and again until the dissolution of my felt inner exertion threshold that without the drug I have learned not to step onto.
Agut H, Huraux J-M, Collandre H, Montagnier L. Susceptibility of human herpesvirus 6 to acyclovir and ganciclovir. Lancet 2: 626, 1989
They write that they replicated an attempt by Dr Russler and colleagues (Aug 12, p 382) – I think that this means that it was also published in The Lancet – and had slightly different results.
According to Agut Dr. Russler claimed that from the level of activity that he had observed in vitro it could be inferred that it must have a good activity against HHV-6 in vivo when used in high doses. I think what they wanted to say with that was that if the very good drugs against HHV-6 like foscarnet were not available doctors should well try aciclovir – instead of just let the patient die.
Agut and team observed less activity of aciclovir against HHV-6 in vitro. Because of that and some reflections on aciclovir's activity against CMV and yet another herpes virus that I can't follow they conclude that they think aciclovir might not have activity against HHV-6.
Agut made their attempts with an HHV-6 kf strain. Russler used another one. HHV-6a and HHV-6b became two different viruses officially only in 2019.
I think that we actually don't know whether aciclovir has activity against HHV-6b in vivo and whether it depends on high doses.
I am not taking very high doses. I figured out that 4x400mg a day are enough to suppress flares fully if I keep activities reasonably low. In higher doses I feel that I can do more. This is also an observation that patient from Germany from my post above describes from her experience of using aciclovir against ME. She takes a higher dose and she goes to work – I think full time. She speaks of 3x1000mg/d.
What's interesting is that she writes that when she goes on the drug again after a couple of days off – because of the side effects – it takes up to three days until the drug unfolds a power big enough to suppress her flare fully and she adds that the effect sets in faster the more she rests during that time.
I thought it through and read some advice for folks on aciclovir against shingles who are recommended to rest and do the same now. I want to be cautios especially when I don't have a specialist to accompany my aciclovir use yet.
It's interesting that she observes that the drug takes three days until full activity while I observe one hour again and again until the dissolution of my felt inner exertion threshold that without the drug I have learned not to step onto.
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Since I was contradicted above that my perception that the effect of the drug was fully developed after one hour couldn't be true because of immunological theory I wonder whether she self-censored here in a way that was in line with what she had learned at medical school in order to be taken seriously.
Currently immune therapies are developed also against HHV-6b. These new treatments will offer advantages over the classic herpes anti-virals.
Arfmeister
Senior Member (Voting Rights)
What I’m curious about is that antiviral’s seem to have other off-target pathways that have other effects apart from antiviral.
As I remember, antivirals can have (strong) immuno suppressing effect. E.g. on bone marrow.
Maybe those pathways could be (partially) behind the patient experiences / remission stories ?
As I remember, antivirals can have (strong) immuno suppressing effect. E.g. on bone marrow.
Maybe those pathways could be (partially) behind the patient experiences / remission stories ?
Concentric_Spiral
Established Member (Voting Rights)
I took Valtrex for 18 months or so because blood work processed at a lab in Germany (I live in Canada) at the guidance of a naturopath showed a weak positive for active EBV. I'd also had mono before the ME/CFS symptoms kicked in. No improvement.
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Rick Sanchez
Senior Member (Voting Rights)
Yeah something like this is my bet. That or some weird indirect effect.
Viral persistence theory has been thoroughly debunked at this point
When I got better. Within 72 hours of taking the medicine I got sick and my back felt like it had frozen to ice. I was forced to lie on my back completely covered in blankets or it felt like I just couldn't keep warm. Hadn't been sick like that for 15+ years since I was mild mild.
Of course looking at the unsuccessful Rituximab trials the most likely explanation would just be random fluctuations. I mean statistically there has to be false positives for everything MECFS patients have tried.
If Dara turns out not to work that was still a 50% big improvement rate just due to Placebo. In Rituxi the rate was, what 30 % or something? (Whilst P1 for n=3 was a 100 %). Meanwhile the positive anti viral stories barely exist taking into account how thousands, possibly tens of thousands have tried the treatment.
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You and others keep repeating that. However, in the German speaking countries the picture looks very different. Barely anyone has tried herpes drugs and doctors don't prescribe it to ME/CFS patients. They have certainly not prescribed it during the past years. Also not in Long Covid.
Everyone I have chatted with on forums didn't got it prescribed for ME but had to find other ways to try it.
I doubt that the picture in the rest of the world looks completely different. If it does, please corroborate your claims with evidence. I asked you to tell me the names of the clinics that you know tried aciclovir with many patients. You didn't answer. Why is that?
I think so too.
However, viral reactivation and viral persistence are two different hypotheses. Viral persistence refers to trigger viruses like Covid. Reactivation asks what role other herpes and other latent viruses play in ME and whether they could cause the typical remitting and relapsing flu-like symptoms. It hasn't been debunked. On the contrary, it hasn't been properly researched until now.
EBV has a double role. It's a potent trigger and some people think it could be at the root of pathomechanism. But I think there isn't any serious research into that hypothesis anymore. But I am not up-to-date about EBV.
This is partially because I had EBV for several weeks and it was quite severe with high fever. And even though symptoms were extremely similar to my ME symptoms and there was a lot of fatigue, there was no PEM, or certainly not such a pronounced PEM.
So when I fell ill with my first ME infection
– for me it is clearly a viral thing – I was convinced it was herpes but it was different from my experiences with EBV and HSV-1.Also, people sometimes die from EBV when it goes to the whole body and here also this syndrome looks different from severe ME. I don't think that the same virus could be responsible for such different pictures of symptoms.
The role of HHV-6b is researched currently in ME/CFS by several leading scientists because it's not being understood.
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Felis Catus
Senior Member (Voting Rights)
I realised I was actually tested for reactivated HHV-6 and it came back negative. I don't know how reliable the testing was (ELIspot I think).
Do the proponents of the HHV-6 theory think that the existing tests are good enough to pick up the reactivation?
Do the proponents of the HHV-6 theory think that the existing tests are good enough to pick up the reactivation?
Jaqueline Cliff is now testing viral loads in saliva. There's a growing body of literature claiming that that's the most reliable way to measure reactivation. Other researchers like Prusty and Ariza go after an enzyme called dUTPase that's produced in early reactivation. They think that ME could be caused by a smoldering, abortive process of reactivation where the immune system is capable to prevent a full blown infection with mass reproduction of the virus but not anymore to control the virus from waking up.
Here's the account of a doctor with ME I chatted with on the German speaking ME/CFS Forum https://www.me-cfs.net/
a couple of years ago. Just as myself, she found out, that aciclovir suppressed her ME flares. She decided to go continually on the drug and to go back to work:
[Testimony of a doctor in her 50s in 2022 who had had CFS for over 10 years about her treatment regime]
... I have found a treatment regimen for myself after I have unsuccessfully gone through dietary changes, fasting, TCM, vitamin detoxification, micro-immunotherapy, antidepressants: I don't want to get so long, I just want to share WHAT HELPS ME WITHOUT SCIENTIFIC CLAIMS: VALACICLOVIR 1000mg three times a day, L-lysine 1500mg 2 times a dayVIT C 1000mg twice a day, zinc 150mg (zinc piccolinate) every 2 days, VIT D3 (colecalciferol) 5mg 2 times a week, (after 12 weeks only 1 time a week.)
In addition, a commercially available Vit B combination preparation, you can also, if you are already taking a vitamin combination preparation, simply continue to take it. The doses of vitamin C and D3 contained in it are far too low for the increased need for CFS. Personally, I consider the daily doses of these vitamins recommended by the ministry to be far too low anyway. Explanation: The vitamins are a kind of basic regeneration. But they do not heal. You can also try to reduce these doses after 6 months, because then the stores (of the fat-soluble, i.e. VitD3) are filled. There is no storage for Vit C, so I personally take 2 grams a day throughout.
The game changer is valacyclovir. The L_Lysin (a harmless amino acid) enhances the effect of valacyclovir. Personally, after taking 1000mg valaciclovir 3 times a day for a year, I now pause it every ten days for a few days, max. 1 week, depending on how I feel. When the symptoms come back after a while, I take valacyclovir again, whereupon the symptoms go away after two to three days, depending on how much I rest. (Without resting, i.e. staying at home for 1-3 days and lying down a lot, it takes much longer for the symptoms to disappear after taking a break. If I don't have the opportunity to take it easy, I take valacyclovir. It has hardly any side effects in HEALTHY people, especially without a damaged liver or kidney. (Please refer to the package insert for the NW). It has been well tested, as it has been on the market since the 70s and almost all HIV patients are long-term users. (Against herpes outbreak)
As for valaciclovir: I can't understand why it's not being offered as a first-line to CFS patients. It is an antiviral, clinically proven against herpes viruses. The positive effect on CFS patients has been known since the 80s, but it cannot be explained because it is ineffective against the "usual suspects" - e.g. EBV. However, the fact that the disease is not caused directly by viruses, but by a certain way of reacting of the immune system, which then impairs the central nervous system (such as inflammation of the brain) and attacks the mitochondria (the power plants in every cell), should have already gotten around among doctors.
It is a fact that valacyclovir helps CFS patients in studies. So if it helps with the symptoms and is a drug against herpes viruses (prevents them from multiplying) - why not conclude that the flare-up of latent herpes virus infections is responsible for the symptoms of CFS? - Everyone has herpes viruses in their bodies, they are activated by Covid or Epstein Barr (glandular fever), and people with a certain immune situation then react with Long Covid or CFS. I am not alone in this knowledge, see Dr. Bhupesh Prusty of the Jul. Max. - Univers. Würzburg (www.researchgate.net/project/ciHHV6) - , but why aren't you told, why isn't it published more widely that valacyclovir can be a game changer? - Is incomprehensible to me. Of course, there are as many immune systems as there are people, and perhaps it does not help everyone. But everyone who can be helped MUST be helped, the disease drives people to suicide, so it is anything but harmless. And because they are now hoping for a business with new drugs in the wake of Long Covid, this must not stop doctors from prescribing well-known meds. An acquaintance of mine had to lie to her doctor because she said she doesn't prescribe valaciclovir for CFS, only for genital herpes. She then said she had herpes and was prescribed it.
Translated with MS Word
a couple of years ago. Just as myself, she found out, that aciclovir suppressed her ME flares. She decided to go continually on the drug and to go back to work:
[Testimony of a doctor in her 50s in 2022 who had had CFS for over 10 years about her treatment regime]
... I have found a treatment regimen for myself after I have unsuccessfully gone through dietary changes, fasting, TCM, vitamin detoxification, micro-immunotherapy, antidepressants: I don't want to get so long, I just want to share WHAT HELPS ME WITHOUT SCIENTIFIC CLAIMS: VALACICLOVIR 1000mg three times a day, L-lysine 1500mg 2 times a dayVIT C 1000mg twice a day, zinc 150mg (zinc piccolinate) every 2 days, VIT D3 (colecalciferol) 5mg 2 times a week, (after 12 weeks only 1 time a week.)
In addition, a commercially available Vit B combination preparation, you can also, if you are already taking a vitamin combination preparation, simply continue to take it. The doses of vitamin C and D3 contained in it are far too low for the increased need for CFS. Personally, I consider the daily doses of these vitamins recommended by the ministry to be far too low anyway. Explanation: The vitamins are a kind of basic regeneration. But they do not heal. You can also try to reduce these doses after 6 months, because then the stores (of the fat-soluble, i.e. VitD3) are filled. There is no storage for Vit C, so I personally take 2 grams a day throughout.
The game changer is valacyclovir. The L_Lysin (a harmless amino acid) enhances the effect of valacyclovir. Personally, after taking 1000mg valaciclovir 3 times a day for a year, I now pause it every ten days for a few days, max. 1 week, depending on how I feel. When the symptoms come back after a while, I take valacyclovir again, whereupon the symptoms go away after two to three days, depending on how much I rest. (Without resting, i.e. staying at home for 1-3 days and lying down a lot, it takes much longer for the symptoms to disappear after taking a break. If I don't have the opportunity to take it easy, I take valacyclovir. It has hardly any side effects in HEALTHY people, especially without a damaged liver or kidney. (Please refer to the package insert for the NW). It has been well tested, as it has been on the market since the 70s and almost all HIV patients are long-term users. (Against herpes outbreak)
As for valaciclovir: I can't understand why it's not being offered as a first-line to CFS patients. It is an antiviral, clinically proven against herpes viruses. The positive effect on CFS patients has been known since the 80s, but it cannot be explained because it is ineffective against the "usual suspects" - e.g. EBV. However, the fact that the disease is not caused directly by viruses, but by a certain way of reacting of the immune system, which then impairs the central nervous system (such as inflammation of the brain) and attacks the mitochondria (the power plants in every cell), should have already gotten around among doctors.
It is a fact that valacyclovir helps CFS patients in studies. So if it helps with the symptoms and is a drug against herpes viruses (prevents them from multiplying) - why not conclude that the flare-up of latent herpes virus infections is responsible for the symptoms of CFS? - Everyone has herpes viruses in their bodies, they are activated by Covid or Epstein Barr (glandular fever), and people with a certain immune situation then react with Long Covid or CFS. I am not alone in this knowledge, see Dr. Bhupesh Prusty of the Jul. Max. - Univers. Würzburg (www.researchgate.net/project/ciHHV6) - , but why aren't you told, why isn't it published more widely that valacyclovir can be a game changer? - Is incomprehensible to me. Of course, there are as many immune systems as there are people, and perhaps it does not help everyone. But everyone who can be helped MUST be helped, the disease drives people to suicide, so it is anything but harmless. And because they are now hoping for a business with new drugs in the wake of Long Covid, this must not stop doctors from prescribing well-known meds. An acquaintance of mine had to lie to her doctor because she said she doesn't prescribe valaciclovir for CFS, only for genital herpes. She then said she had herpes and was prescribed it.
Translated with MS Word
Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation
Stephanie L. Grach, Jaime Seltzer, Michael R. Mueller, Chris A. Aakre, Lasonya T. Natividad, Donna K. Lawson, Ravindra Ganesh, Ryan T. Hurt
I had a look at the above paper: They write that of the approx. 650 ME/CFS patients that came to their clinic between 2018-2022 and who they included in their study none had been prescribed (val)aciclovir or any other herpes drug nor self-medicated with it.
Are users of this forum who claim that many patients have tried (val)aciclovir buying into a myth?
Stephanie L. Grach, Jaime Seltzer, Michael R. Mueller, Chris A. Aakre, Lasonya T. Natividad, Donna K. Lawson, Ravindra Ganesh, Ryan T. Hurt
I had a look at the above paper: They write that of the approx. 650 ME/CFS patients that came to their clinic between 2018-2022 and who they included in their study none had been prescribed (val)aciclovir or any other herpes drug nor self-medicated with it.
Are users of this forum who claim that many patients have tried (val)aciclovir buying into a myth?
Felis Catus
Senior Member (Voting Rights)
There's no need for such a language.
I claim that many patients have tried (val)aciclovir not because someone told me that but because I've come across and spoken to patients who've tried them, because aciclovir was offered to me by doctors, because nearly all or all high profile private doctors in the UK are prescribing them, because they offer them within the first few months of seeing a patient, because there is always someone in some group who's got it from a pharmacy for "herpes" asking about the dose.
You don't have to give a drug to every patient under the sun to figure out it probably doesn't solve the problem.
I'm done with this thread.
You and others keep repeating that herpes drugs were and are given to patients aggressively. However, where is the evidence for that?
The subjective experience of the group of patients that I belong to who respond to aciclovir is different! We don't find doctors who prescribe it and therefore have to find other ways to get it.
And the objective evidence seems to speak just the same language. 650 patients from the US and not one had tried a herpes drug.
As long as you don't offer any evidence for your claim that in GB private doctors are all trying herpes drugs with patients it is legit – and in any way insulting – that I claim that you are supporting a myth.
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Thanks. I tried to set a link but are not enough familiar yet with the website.
And I want to add that criticism that investigating "undertreatment" in ME/CFS doesn't make sense doesn't change anything about the fact that the data of that study shows that of 650 ME/CFS patients no one – not a single one – had ever tried a herpes drug.
Which is completely the opposite from what some users have claimed here above from their personal observations.
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Verity
Senior Member (Voting Rights)
I only got sick in 2019, and I have the impression that antiviral use was much more common in the past but has fallen out of favor. That might be why your experience aligns with it not being common, but others are saying it’s been tried many times. LDN, LDA, and maybe rapamycin and JAK inhibitors are much trendier these days.
Maybe someone who has been sick longer can say whether this is accurate.
Jonathan Edwards
Senior Member (Voting Rights)
I know most of the relevant physicians personally and they have told me that they regularly use antivirals. Maybe it is different in the USA. Yes, you seem to be insulting (try parsing your sentence!).