A quick update on my first longer term use of acyclovir/valacyclovir.
10 days on 2000mg of acyclovir a day every three-four hours.
18 days on 750-1000mg of acyclovir a day 3-4x250mg whereas I take one or two doses of 250mg within a few hours after waking (depending on the activities I have planned) and then the other two doses after another 6-7hours respectively.
Please note: I won't reply to comments immediately because I need some time of from forum discusssions.
A couple of observations stand out:
I tolerate the medication better and better. So there's obviously a (German
habituation effect. I am dlad!
With the only serious side effect of headaches or a headachy feel but not very painful or intolerable but a bit unpleasant for sure.
I understand now that up to three mg/a day as some more severe patients describe their dosage might be tolerable – not really in the first weeks but afterwards.
The combination of the drug and the eating of a lot of rather fast sugars leads to a feeling of being pretty drugged for some time. So I try to avoid that. But does not always work around Swiss chocolate
I guess that the sugars speed up the break down of the drug in the kidneys.
I experience massive fatigue in the afternoon – which is something very different from mitochondrially mediated exhaustion while acute with ME flares!
I suppose that it is partly because the drug helps me to not stress myself out anymore with pacing and a constant worry in the background of doing too much and brings a lot of relief – especially that I managed after years to convince my GP to help me with a regular prescription at least for a trial of valacyclovir. Because I haven't managed yet to organise it myself.
The fatigue feels as if the psychological/physical exhaustion that has built over the past years since I became a moderate is being set free.
Also I could imagine – I am aware that this is all guess work – that there might be some fatigue that is induced when the brain shuts down to do self-repair as described in this article:
www.nzz.ch
Lastly, my dementia signs have strongly gone up. I am for example a lot worse at English at the moment compared to normal. I have experienced this before some time after I had been able to stabilize ME/CFS flares and being not acute anymore for many months. After some more months the dementia signs went down again.
I am speculating that it might have to do with a lot of cell death at the same moment in the frontal lobe where I experience smoldering brain inflammation signs when acute with ME/CFS. Maybe the immune system is capable of detecting and destroying cells where aciclovirtriphosphat has stopped viral activity?
Add: Pronounced fatigue (a classic tiredness that has nothing to do with ME/CFS "fatigue" that I can tell apart from acute ME exhaustion easily with my 20 years of intensive yoga and mindfulness training) might have two more causes:
1) Low ferritin, I was at 43 microgramme/l three weeks ago and falling because of a gynaecological problem where I felt already the typical tired legs and arms in the last weeks.
2) Direct effect of acyclovir that shows up in the package insert as well.
It is impossible to tell which reason is responsible for what amount of the total fatigue. The fatigue feels good, rest feels restorative, and the experience is insync with my situation. So I guess that brain healing fatigue and psychological fatigue because of discharging of stored up distress play an important part.
10 days on 2000mg of acyclovir a day every three-four hours.
18 days on 750-1000mg of acyclovir a day 3-4x250mg whereas I take one or two doses of 250mg within a few hours after waking (depending on the activities I have planned) and then the other two doses after another 6-7hours respectively.
Please note: I won't reply to comments immediately because I need some time of from forum discusssions.
A couple of observations stand out:
I tolerate the medication better and better. So there's obviously a (German
habituation effect. I am dlad!With the only serious side effect of headaches or a headachy feel but not very painful or intolerable but a bit unpleasant for sure.
I understand now that up to three mg/a day as some more severe patients describe their dosage might be tolerable – not really in the first weeks but afterwards.
The combination of the drug and the eating of a lot of rather fast sugars leads to a feeling of being pretty drugged for some time. So I try to avoid that. But does not always work around Swiss chocolate
I guess that the sugars speed up the break down of the drug in the kidneys.
I experience massive fatigue in the afternoon – which is something very different from mitochondrially mediated exhaustion while acute with ME flares!
I suppose that it is partly because the drug helps me to not stress myself out anymore with pacing and a constant worry in the background of doing too much and brings a lot of relief – especially that I managed after years to convince my GP to help me with a regular prescription at least for a trial of valacyclovir. Because I haven't managed yet to organise it myself.
The fatigue feels as if the psychological/physical exhaustion that has built over the past years since I became a moderate is being set free.
Also I could imagine – I am aware that this is all guess work – that there might be some fatigue that is induced when the brain shuts down to do self-repair as described in this article:
Das Gehirn heilt sich selber
Mittlerweile kann die Medizin vieles reparieren: Knochen werden verlängert, Herzklappen eingesetzt, Gelenke geschmirgelt. Nur die Nervenzellen entziehen sich der mechanischen Wiederherstellung. Der ärztliche Eingriff ins Gehirn kann zwar Krankes entfernen. Doch es ist unmöglich, die Nervenzellen...
www.nzz.ch
Lastly, my dementia signs have strongly gone up. I am for example a lot worse at English at the moment compared to normal. I have experienced this before some time after I had been able to stabilize ME/CFS flares and being not acute anymore for many months. After some more months the dementia signs went down again.
I am speculating that it might have to do with a lot of cell death at the same moment in the frontal lobe where I experience smoldering brain inflammation signs when acute with ME/CFS. Maybe the immune system is capable of detecting and destroying cells where aciclovirtriphosphat has stopped viral activity?
Add: Pronounced fatigue (a classic tiredness that has nothing to do with ME/CFS "fatigue" that I can tell apart from acute ME exhaustion easily with my 20 years of intensive yoga and mindfulness training) might have two more causes:
1) Low ferritin, I was at 43 microgramme/l three weeks ago and falling because of a gynaecological problem where I felt already the typical tired legs and arms in the last weeks.
2) Direct effect of acyclovir that shows up in the package insert as well.
It is impossible to tell which reason is responsible for what amount of the total fatigue. The fatigue feels good, rest feels restorative, and the experience is insync with my situation. So I guess that brain healing fatigue and psychological fatigue because of discharging of stored up distress play an important part.
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