The leading researchers on the HHV-6b hypothesis are Cliff and Prusty. There aren't too many. They are all important.
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Antivirals as an ME/CFS treatment (e.g. valacyclovir, valgancyclovir, amantadine)
- Thread starter Lidia Thompson
- Start date
I am really glad I bumped into that textbook. I am aware of HHV-6b having a somewhat different shape and therefore doesn't seem to be a match with aciclovir because that was explained there too.
However, there was also claimed that even when aciclovir was not used clinically to fight HHV-6b because of this perveived mismatch and there being other herpes drugs like ganciclovir that fight HHV-6 really well it was still known from in vitro studies that aciclovir had good activity against HHV-6.
It is this information that I build my theory upon that I have HHV-6b reactivation that I can fight with aciclovir.
Response time: I can only repeat for the third time. I have a one hour response time not only when I use aciclovir orally (400mg every 3-4 hours, I weigh 66 kg) to fight my ME flares. When I have a mild flare or a flare is only upcoming then one day of aciclovir in combination with complete bedrest for another 1-2 days are enough to push my flares completely down.
When I could use it for the first time a couple of years ago I had a strong ME flare with brain inflammation involved (a hot, tingling feeling in my frontal lobe, a fever, and increased brain pressure were part of the picture. I stayed on the drug for one week, taking 2400mg every day, and then used it another week to stay on the safe side and prevent any flare-ups with 2x400mg every day.
My experience is just the same with cold sores lip cream. I feel an effect after one hour and then I have to reapply the lip cream every three hours the latest for about 2-3 days. I'm sure everyone would agree with me that symptom reduction can be sensed very fast after the first application (approx. one hour) but then needs to be continued continuously for several days.
I am HSV-2 negative.
This is consistent with what I read in that paper about how infectiologists apply aciclovir orally in their HSV brain inflammation patients. Aciclovir unfolds it's full fighting power after one hour and then gets metabolized really quickly. Therefore you ideally add a little bit every hour.
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Rick Sanchez
Senior Member (Voting Rights)
I personally agree that if we theoretically assumed anti-virals worked on a subset of MECFS patients then the effect should occur fairly quickly. Although whether it would work within hours I have absolutely no idea. The other 2 patients who were certain that Acy / Vala worked for them claimed to have effects within 2 weeks too.
But I wonder. How do you square your theory with the fact that so many patients have tried Acy / Vala (at the required dose) and not had any effect?
If we accepted the idea that a HHV subgroup existed (which I sincerely doubt), then surely said subgroup would have to be tiny?
I hope you don't see our replies as needlessly arrogant. It's just that pretty much everyone here including myself considers the discussion as one that ended decades ago when no one could replicate results in placebo controlled studies.
But I wonder. How do you square your theory with the fact that so many patients have tried Acy / Vala (at the required dose) and not had any effect?
If we accepted the idea that a HHV subgroup existed (which I sincerely doubt), then surely said subgroup would have to be tiny?
I hope you don't see our replies as needlessly arrogant. It's just that pretty much everyone here including myself considers the discussion as one that ended decades ago when no one could replicate results in placebo controlled studies.
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Here in continental Europe I haven't heard of anyone in the last years who was put on aciclovir with an ME/CFS diagnosis. It was done by some doctors back in the days I understand. That's the reason why several studies have been done.
The studies are inconclusive when at the same time researchers who have looked into this have said that aciclovir and other herpes drugs should be studied further, perferrably by seperating patients with PCR.
Antivirals? I think that there are so many of them with very different pharmacologies that we can't discuss them all together.
This is a thread on aciclovir and other herpes drugs with activity against HHV-6b. That's a specific question.
As I explained several times aciclovir develops its full potential within one hour and patients can feel this immediately. Whatever is done at these clinics – I doubt that it is done by well informed doctors.
Here in Switzerland it's almost impossible to get a prescription for a herpes drug without a proof of reactivation. And none of the ME/CFS specialists prescribe it.
My specialist was very interested when I brought him the HHV-6b research and the studies that were done on aciclovir. He's researched a drug against a retorvirus anti-body. So it's kind of his field. Still he wasn't at all up-to-date about the herpes research in ME/CFS. I doubt whether doctors at these clinics that you mention are.
I am actually reminded of the experimental poly-pharmacy that has developed in the US since the 1980ies in psychiatry when I hear what's being done at Long Covid clinics in the states. I agree with you. I also think that nothing will come of this.
On a personal note: Do you believe that you had a three months placebo effect that then faded away over another six months?
ChronicallyOverIt
Senior Member (Voting Rights)
Can you elaborate on what textbook this is and what claims they make on this? Or any research that shows this?
I have chatted online or in person to five patients who have tried aciclovir. Four of them had the same positive effect as I had. Three of them told me that they went immediately back to work or planned to go back to uni.
Two of them described that after three-twelve months they had to increase dosage a lot-a little bit. One of them told me that after nine months the effect was gone. The others haven't tried it long enough to be able to tell anything about fading effects or I am not in touch with them anymore.
One friend of mine shows a very similiar ME symptom picture and has tried aciclovir as well with no effect.
So the immediate picture that I have is very different from what other's here are seeing. My impression – with a focus on the German speaking countries is – that very few patients have tried aciclovir.
jnmaciuch
Senior Member (Voting Rights)
When aciclovir is used for several days, yes it would work by inhibiting viral replication. I'm saying you can't apply the same logic to the first hour.
You're right that the drug concentration peaks in the blood in one hour. What you're missing from the pharmacodynamic perspective is that this does not mean that viral load starts declining rapidly within one hour. A full cycle of HSV replication takes closer to 12 hours to complete, similar to other viruses in that family. The drug does not kill or clear the virus, just prevents further replication. So within the first hour, viral load will only be reduced by a small fraction at most (see this paper, figure 7). And that's assuming that the drug immediately gets to all the infected cells and binds to the right proteins to cease all viral replication immediately--which, if you know anything about pharmacodynamics, is a fantasy.
The vast majority of fully formed viral particles and immunogenic viral fragments are going to be sticking around and still triggering an infection response until they are all cleared out by the immune system (which takes hours/days). Basically all the symptoms that you feel from an infection, whether that is local inflammation of a cold sore or malaise/brain fog, are caused by immune signaling responding to that virus, not the virus itself. So even if there was a meaningful reduction in viral replication in the first hour--let's be generous and say something like 5%--the immune system would still be reacting to the leftover fragments and still causing symptoms as if there was no change in viral replication.
However, there is a possible explanation for why aciclovir could cause a symptom reduction within an hour besides placebo effect--in addition to inhibiting viral DNA polymerase, it also directly targets proteins in immune cells. Very simple experiments show that this is likely true (example). It's also possible it targets something directly in the nervous system that would alter the feelings of pain or brain fog or malaise. [Edit: what would need to be established in a clinical trial is whether this actually happens in-vivo and contributes to symptom relief more than random fluctuation.]
It seems like this is a theory you find really personally important, so I don't think further discussion will get anywhere. Though if you think people are disagreeing because they simply don't understand pharmacological or viral dynamics, I hope this might prompt you to reassess that assumption. If infectious disease experts are telling you differently, I think that is an indication that they don't understand those dynamics.
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I don't have the energy to find it again now. But I will get back to you to let you know. It was in one of the two German medical school text books on infectiology. But I don't remember which number or publisher.
Rick Sanchez
Senior Member (Voting Rights)
I live in continental Europe and I know of at least two MECFS clinics who have treated patients with Aca / Vala (I won't mention them). How many patients at these clinics have tried in total I can not say. But if I had to guess I would say at least 50 patients just at these two clinics, and that's a conservative estimate! And yes, at the theoretically required dose.
My point is that a lot of patients have indeed tried these treatments, and a lot of patients still do... And yet even anecdotally the evidence that this treatment works is honestly terrible. In fact we have significantly more positive brain training ancedotes than when it comes to Acy / Vala. I mean, why aren't there success stories all over the place? Well probably because it doesn't work, which is also why we have no successful placebo controlled study for the treatment.
Gun to my head. I would say that something did happen as a result of Vala. However I just can't deny the very likely chance that it was merely due to placebo / random fluctuations, given what I know about the illness and the failed Rituximab studies.
Placebo controlled studies are the only way to figure out if something works with this illness. And I think that healthy scepticism is the only correct response to both our ancedotes.
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Maybe you could tell me the names of these mysterious clinics in a personal message. Because I am still searching urgently for a doctor who prescribes aciclovir to me in continental Europe.
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I find theory interesting. But I started this discussion to learn more about what's a sensible practical use of aciclovir in ME/CFS with other patients who also have their flares fully suppressed by the drug.
I feel pretty alone and uncomfortable in dealing with self-medicating with a prescription drug that has not only long term kidney damage potential but can also foster the building of resistancies in herpes viruses.
But the message that I got from you and others here was that my direct experience with the drug was not accurate and couldn't be real because it contradicted the holy laws of immunology on an abstract level.
I feel that the sole reason to bring it up was to undermine my trust in my direct observations of the workings of the drug in my body and judge my and all the other cases of ME patients who respond to aciclovir as not real but a placebo effect.
I am sure you get that why I didn't find that helpful at all.
Yes, we can stop our discussion here.
I promised a link to the paper on the in vitro activity on aciclovir against HHV-6b:
Authors and title:
Agut H, Huraux J-M, Collandre H, Montagnier L. Susceptibility of human herpesvirus 6 to acyclovir and ganciclovir. Lancet 2: 626, 1989
I don't have access to it but I will ask a friend to download it for me.
Authors and title:
Agut H, Huraux J-M, Collandre H, Montagnier L. Susceptibility of human herpesvirus 6 to acyclovir and ganciclovir. Lancet 2: 626, 1989
I don't have access to it but I will ask a friend to download it for me.
I was referring to the work of Fluge. I am judging like this from the documentary about him that's online.
Felis Catus
Senior Member (Voting Rights)
Most, if not all, private LC doctors in the UK have been offering aciclovir or valaciclovir to patients, including those with COVID-triggered ME/CFS. Some private ME/CFS doctors have been prescribing it, too. It's possible to get aciclovir from at least some pharmacies for herpes without any proof of the diagnosis and some patients have tried it that way.
Publications on LC talk about reactivated viruses and some of it is coming from Polybio, so patients are aware of the options as well as probably any doctor in that space. It didn't do anything for me. I really think we'd know by now if it worked.
Without subjective experience there wouldn't be any knowledge at all. Without anecdotal evidence we wouldn't know about ME. So I think it's gotten us far already.
You say: If there was even a small subgroup that had useful responses, trials should pick up a signal.
I have posted that 2019 overview on drugs and ME that says herpes drugs should be further researched because of "signals", preferrably by chosing participants via PCR – for example for HHV-6b in saliva.
I feel that you are selectively reading the literature.
I don't know what's a "clinical seat of the pants". Can you elaborate? If you mean the instruction that I've read on how to decide on the amount of aciclovir that should be given in patients with HSV brain inflammation I'll provide the link to the article.
Here again: It's okay that certain papers you find more convincing than others. But just to deny any scientific value for all those papers that present a conclusion that go against your ideas of what ME is about or what's good science or not will not advance the ME research.
You say: "I don't think you are going to convince anyone".
Maybe not on this forum, yes.
Outside of it I have already made all my doctors, including my ME specialist, aware of the HHV-6b research into ME and my idea that it could explain why I can suppress flares with aciclovir. And that's what's important for me. They're all open to and interested in the idea which is why I am now going to see an infectologist.
I feel well prepared after the "steel bath" that you have given me here and feel that the visit at the hospital will be a Sunday walk
(Giving someone a steel bath: German for describing my situation here where one or many people tell you that nothing that you say makes sense)Whether they will agree to make the HHV-6b tests in saliva or not.
My GP and my specialist have both already agreed to help me to make the tests when I shouldn't be successful at the infectologist's clinic. The reason why I am going there is because I want ideally have a doctor who has specialised in herpes viruses. But if I can't find anyone, I'll work with the others who have already agreed to help.
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Jonathan Edwards
Senior Member (Voting Rights)
I don't have any specific ideas about what ME/CFS is all about - unlike yourself it seems. I am prepared to consider all possibilities. I think the literature points more to some than others.
Comments like the one above deserve a look in the mirror I think !!
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]
... habe ich ein Behandlungsschema für mich gefunden, nachdem ich Ernährungsumstellung, Fassten, TCM, Vitaminentgiftung, Mikroimmuntherapie, Antidepressiva erfolglos durch habe: Ich will nicht so lang werden, ich will nur OHNE WISSENSCHAFTLICHEN ANSPRUCH teilen, was mir hilft: VALACICLOVIR 1000mg drei mal täglich, L-Lysin 1500mg 2mal täglich
VIT C 1000mg zwei mal täglich, Zink 150mg (Zinkpiccolinat)alle 2 Tage, VIT D3 (Colecalciferol) 5mg 2mal pro Woche, (nach 12 Wochen nur noch 1mal pro Woche.)
Zusätzlich ein handelsübliches Vit B Kombipräparat, man kann auch, falls man bereits ein Vitamin-Kombipräparat nimmt, dieses einfach zusätzlich weiter nehmen. Die darin enthaltenen Dosen Vitamin C und D3 sind für den gesteigerten Bedarf bei CFS viel zu gering. Ich persönlich halte die vom Ministerium empfohlenen Tagesdosen dieser Vitamine ohnehin für viel zu gering.
Erläuterung: Die Vitamine sind eine Art Basisregeneration. Sie heilen aber nicht. Man kann auch versuchen, nach 6 Monaten diese Dosen zu reduzieren, weil dann die Speicher (der fettlöslichen, also VitD3 ) gefüllt sind. Für Vit C gibts keie Speicherung, daher nehme ich persönlich durchgehend 2 Gramm am Tag.
Der Bringer ist das Valaciclovir. Das L_Lysin (eine harmlose Aminosäure) verstärkt den Effekt von Valaciclovir. Ich persönlich, nachdem ich ein Jahr lang 1000mg Valaciclovir 3mal täglich durchgenommen habe, pausiere es jetzt alle zehn Tage für einige Tage, max. 1 Woche, je nachdem wie ich mich fühle. Meist nach einer Wo kommen die Symptome wieder, dann nehme ich wieder Valaciclovir, worauf die Symptome nach zwei bis drei Tagen wieder weggehen, je nachdem wie ich mich zusätzlich schonen kann. (Ohne Schonen, d.h. 1-3 Tage daheim bleiben und viel liegen, dauert es viel länger, bis die Symptome nach dem Pausieren wieder verschwinden. Wenn ich keine Gelegenheit habe mich zu schonen nehme ich Valaciclovir durch. Es hat bei GESUNDEN, vor allem ohne beschädigte Leber oder Niere, kaum Nebenwirkungen. (Bitte die NW dem Beipackzettel entnehmen). Es ist gut erprobt, da seit den 70ern auf dem Markt und fast alle HIV - Patienten Dauereinnehmer sind. (Gegen Herpes-Ausbruch)
Zum Valaciclovir : Ich kann nicht verstehen, warum es nicht als erste Wahl CFS - Patienten angeboten wird. Es ist ein Virostatikum, klinisch verlässlich erprobt gegen Herpes - Viren. Man kennt den positiven Effekt auf CFS - Patienten seit den 80ern, kann ihn sich aber nicht erklären, weil gegen die "üblichen Verdächtigen" - z.B. EBSV -unwirksam. Dass die Krankheit aber nicht von Viren direkt verursacht wird, sondern von einer bestimmten Reaktionsweise des Immunsystems, das dann das zentrale Nervensystem beeinträchtigt (wie z.B. eine Entzündung des Gehirns) und die Mitochondrien (die Kraftwerke in jeder Zelle) angreift, sollte sich bei den Ärzten schon herumgesprochen haben. Dass Valaciclovir CFS - Patienten in Studien hilft, ist Fakt. Wenn es also gegen die Symptome hilft und ein Medikament gegen Herpesviren ist (verhindert deren Vermehrung) - warum nicht den Schluss ziehen, dass das Aufflammen latenter Herpesvirusinfektionen für die Symptome von CFS verantwortlich sind? - Jeder hat Herpesviren im Körper, durch Covid oder Epstein Barr (Pfeiffersches Drüsenfieber) werden sie aktiviert, und Menschen mit einer bestimmten Immunlage reagieren dann mit Long Covid oder CFS. Ich bin mit diesem Wissen nicht allein, s. Dr. Bhupesh Prusty von der Jul. Max. - Univers. Würzburg (www.researchgate.net/project/ciHHV6) - , aber warum bekommt man es nicht gesagt, warum wird das nicht breiter publiziert, dass Valaciclovir ein Gamechanger sein kann? - Ist mir unbegreiflich.
Freilich gibt es so viele Immunlagen wie Menschen, und vielleicht hilft es nicht allen. Aber jedem dem geholfen werden kann MUSS geholfen werden, die Krankheit treibt Menschen bis in den Suizid, ist also alles andre als harmlos. Und weil man jetzt im Zug von Long - Covid ein Geschäft mit neuen Medikamenten erhofft, darf das Ärzt*innen nicht davon abhalten altbekannte Meds zu verschreiben. Eine Bekannte von mir musste ihre Ärztin anlügen, weil diese sagte, Valaciclovir verschreibt sie nicht gegen CFS, nur gegen Genitalherpes. Sie sagte dann, sie hat Herpes und bekam es verschrieben.
I will provide a translation as soon as possible and I hope I can also provide the link. I will need to find out how to search the forum for old posts.
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]
... habe ich ein Behandlungsschema für mich gefunden, nachdem ich Ernährungsumstellung, Fassten, TCM, Vitaminentgiftung, Mikroimmuntherapie, Antidepressiva erfolglos durch habe: Ich will nicht so lang werden, ich will nur OHNE WISSENSCHAFTLICHEN ANSPRUCH teilen, was mir hilft: VALACICLOVIR 1000mg drei mal täglich, L-Lysin 1500mg 2mal täglich
VIT C 1000mg zwei mal täglich, Zink 150mg (Zinkpiccolinat)alle 2 Tage, VIT D3 (Colecalciferol) 5mg 2mal pro Woche, (nach 12 Wochen nur noch 1mal pro Woche.)
Zusätzlich ein handelsübliches Vit B Kombipräparat, man kann auch, falls man bereits ein Vitamin-Kombipräparat nimmt, dieses einfach zusätzlich weiter nehmen. Die darin enthaltenen Dosen Vitamin C und D3 sind für den gesteigerten Bedarf bei CFS viel zu gering. Ich persönlich halte die vom Ministerium empfohlenen Tagesdosen dieser Vitamine ohnehin für viel zu gering.
Erläuterung: Die Vitamine sind eine Art Basisregeneration. Sie heilen aber nicht. Man kann auch versuchen, nach 6 Monaten diese Dosen zu reduzieren, weil dann die Speicher (der fettlöslichen, also VitD3 ) gefüllt sind. Für Vit C gibts keie Speicherung, daher nehme ich persönlich durchgehend 2 Gramm am Tag.
Der Bringer ist das Valaciclovir. Das L_Lysin (eine harmlose Aminosäure) verstärkt den Effekt von Valaciclovir. Ich persönlich, nachdem ich ein Jahr lang 1000mg Valaciclovir 3mal täglich durchgenommen habe, pausiere es jetzt alle zehn Tage für einige Tage, max. 1 Woche, je nachdem wie ich mich fühle. Meist nach einer Wo kommen die Symptome wieder, dann nehme ich wieder Valaciclovir, worauf die Symptome nach zwei bis drei Tagen wieder weggehen, je nachdem wie ich mich zusätzlich schonen kann. (Ohne Schonen, d.h. 1-3 Tage daheim bleiben und viel liegen, dauert es viel länger, bis die Symptome nach dem Pausieren wieder verschwinden. Wenn ich keine Gelegenheit habe mich zu schonen nehme ich Valaciclovir durch. Es hat bei GESUNDEN, vor allem ohne beschädigte Leber oder Niere, kaum Nebenwirkungen. (Bitte die NW dem Beipackzettel entnehmen). Es ist gut erprobt, da seit den 70ern auf dem Markt und fast alle HIV - Patienten Dauereinnehmer sind. (Gegen Herpes-Ausbruch)
Zum Valaciclovir : Ich kann nicht verstehen, warum es nicht als erste Wahl CFS - Patienten angeboten wird. Es ist ein Virostatikum, klinisch verlässlich erprobt gegen Herpes - Viren. Man kennt den positiven Effekt auf CFS - Patienten seit den 80ern, kann ihn sich aber nicht erklären, weil gegen die "üblichen Verdächtigen" - z.B. EBSV -unwirksam. Dass die Krankheit aber nicht von Viren direkt verursacht wird, sondern von einer bestimmten Reaktionsweise des Immunsystems, das dann das zentrale Nervensystem beeinträchtigt (wie z.B. eine Entzündung des Gehirns) und die Mitochondrien (die Kraftwerke in jeder Zelle) angreift, sollte sich bei den Ärzten schon herumgesprochen haben. Dass Valaciclovir CFS - Patienten in Studien hilft, ist Fakt. Wenn es also gegen die Symptome hilft und ein Medikament gegen Herpesviren ist (verhindert deren Vermehrung) - warum nicht den Schluss ziehen, dass das Aufflammen latenter Herpesvirusinfektionen für die Symptome von CFS verantwortlich sind? - Jeder hat Herpesviren im Körper, durch Covid oder Epstein Barr (Pfeiffersches Drüsenfieber) werden sie aktiviert, und Menschen mit einer bestimmten Immunlage reagieren dann mit Long Covid oder CFS. Ich bin mit diesem Wissen nicht allein, s. Dr. Bhupesh Prusty von der Jul. Max. - Univers. Würzburg (www.researchgate.net/project/ciHHV6) - , aber warum bekommt man es nicht gesagt, warum wird das nicht breiter publiziert, dass Valaciclovir ein Gamechanger sein kann? - Ist mir unbegreiflich.
Freilich gibt es so viele Immunlagen wie Menschen, und vielleicht hilft es nicht allen. Aber jedem dem geholfen werden kann MUSS geholfen werden, die Krankheit treibt Menschen bis in den Suizid, ist also alles andre als harmlos. Und weil man jetzt im Zug von Long - Covid ein Geschäft mit neuen Medikamenten erhofft, darf das Ärzt*innen nicht davon abhalten altbekannte Meds zu verschreiben. Eine Bekannte von mir musste ihre Ärztin anlügen, weil diese sagte, Valaciclovir verschreibt sie nicht gegen CFS, nur gegen Genitalherpes. Sie sagte dann, sie hat Herpes und bekam es verschrieben.
I will provide a translation as soon as possible and I hope I can also provide the link. I will need to find out how to search the forum for old posts.
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Here's a case study about a patient who recovered from Long Covid after taking aciclovir for one week:
