Alternative to acyclovir (bad reaction)

[Zahr82]

Hi. I had an appointment with Dr Amolak Bansal. He decided its very likely my case involves reactivated viruses. He gave me supps, plus 3 months of aclicovir. I had the first dose last night. And one today. It started with anxiety, but the whole day I've felt so so depressed. I mean if it was just ordinary depression, I could deal with it, but it was anhedonic and severe. Are there any alternatives I could take? I'm going to try to contact him maybe he will suggest something

 

[Judee]

@Hip mentioned Famvir being better tolerated in this thread: https://forums.phoenixrising.me/thr...everal-tries-what-do-i-do.58760/#post-2289568 though this thread is about Valtrex but he seemed to indicate that Valtrex converts to acyclovir in the body. ??

Sorry, you're going through that. Fludrocortisone did the same thing to me.

 

[Zahr82]

Oh, thanks for this. Yes I did think about valtrex. I can tell you, just a day on aclicovir was enough. I never knew it could do something like that

 

[Pyrrhus]

It is common to have strong start-up effects when starting anti-herpesvirus medications like Acyclovir, Valtrex or Valcyte. The start-up effects seem to eventually go away as the herpesviruses are suppressed, but everyone is different in this regard.

Many people make the mistake of lowering the dosage to try to lessen the start-up effects. This only allows the herpesviruses to rebound and prolongs the start-up effects. It may also lead to the herpesviruses mutating and becoming resistant to the drug.

Sometimes, raising the dosage can better suppress the herpesviruses and lead to faster resolution of the start-up effects, but again everyone is different in this regard.

Anyway, hope this helps...

 

[vision blue]

I've written in a couple of threads that i got very sick with both acyclovir and valtrex.

@Pyrrhus Was not a startup effect with me because once I stayed on it for more than 3 weeks (might have even been 6 weeks) hoping to supress the damn virus. Nearly kiled me and the virus came back as soon as i was off. The symptoms got worse over time, not better.

There are some research reports finding it is very rare for strains of hsv anyway to become resistant to acylovir or valtrex regardless of what you do with dosage. I can try to find the reference @Pyrrhus if it matters.

in my case, my symptoms were digestive. Seemed to eat through my esophagus. I got dysphagia plus reflux. Was unable to eat on it really. ried all manners of antacids , honey, all sorts of things to get it down. The night I threw up both the meds and gaviscon - not fun, so much burning - i had to finally stop. I also tried snorting it so that it would not go down digestive track assuming that was the problem - but got the same reaction! (always delayed by at least 24 hours- same was true for oral).
I thought, and independently an ID doc thought, that could mean the virus was in my digestive track since the antivirals go after cells infected with the virus. But since i also have a mast cell issue, who knows. My digestive system never normal after tha. Incidetnall, i tried 3 or 4 seperate times to resume, same effect each time.

By the same logic, I wonder if youve got brain effects if that suggest virus in those regions of brain responsible for emotional stuff.

I had also heard famvir was more well tolerated plus it tis a differenc lass thatn the other two. Acylovir is active ingredient and valacylcovir just a prodrug for it. Famvir different. I was very reluctant- famvir has a very strong smell compared to the others- my mast cells not found of that. I put some up my nose to snort and area got swollen. so didn't experiment much further.

There's not a lot of big pharma antivirals that docs are willing to prescribe for simple viruses, or to put it more accurately, not willing to prescribe others unless one has good evidence of specific serious viruses targeted by other antivirals other than these three. That's because the others are considered more toxic, and these 3 are considered benign. of course to folks like us, they are not benign at all and the supposed more toxic ones might be just fine.

Question: why did he think in your case recurrent viruses were to blame?

 

[Zahr82]

It is common to have strong start-up effects when starting anti-herpesvirus medications like Acyclovir, Valtrex or Valcyte. The start-up effects seem to eventually go away as the herpesviruses are suppressed, but everyone is different in this regard.

Many people make the mistake of lowering the dosage to try to lessen the start-up effects. This only allows the herpesviruses to rebound and prolongs the start-up effects. It may also lead to the herpesviruses mutating and becoming resistant to the drug.

Sometimes, raising the dosage can better suppress the herpesviruses and lead to faster resolution of the start-up effects, but again everyone is different in this regard.

Anyway, hope this helps...

Yes
L0

It is common to have strong start-up effects when starting anti-herpesvirus medications like Acyclovir, Valtrex or Valcyte. The start-up effects seem to eventually go away as the herpesviruses are suppressed, but everyone is different in this regard.

Many people make the mistake of lowering the dosage to try to lessen the start-up effects. This only allows the herpesviruses to rebound and prolongs the start-up effects. It may also lead to the herpesviruses mutating and becoming resistant to the drug.

Sometimes, raising the dosage can better suppress the herpesviruses and lead to faster resolution of the start-up effects, but again everyone is different in this regard.

Anyway, hope this helps...

Yes, I really didn't want to stop it, but by day 2 I felt so terrible, I literally couldn't carry on with it

 

[Zahr82]

I've written in a couple of threads that i got very sick with both acyclovir and valtrex.

@Pyrrhus Was not a startup effect with me because once I stayed on it for more than 3 weeks (might have even been 6 weeks) hoping to supress the damn virus. Nearly kiled me and the virus came back as soon as i was off. The symptoms got worse over time, not better.

There are some research reports finding it is very rare for strains of hsv anyway to become resistant to acylovir or valtrex regardless of what you do with dosage. I can try to find the reference @Pyrrhus if it matters.

in my case, my symptoms were digestive. Seemed to eat through my esophagus. I got dysphagia plus reflux. Was unable to eat on it really. ried all manners of antacids , honey, all sorts of things to get it down. The night I threw up both the meds and gaviscon - not fun, so much burning - i had to finally stop. I also tried snorting it so that it would not go down digestive track assuming that was the problem - but got the same reaction! (always delayed by at least 24 hours- same was true for oral).
I thought, and independently an ID doc thought, that could mean the virus was in my digestive track since the antivirals go after cells infected with the virus. But since i also have a mast cell issue, who knows. My digestive system never normal after tha. Incidetnall, i tried 3 or 4 seperate times to resume, same effect each time.

By the same logic, I wonder if youve got brain effects if that suggest virus in those regions of brain responsible for emotional stuff.

I had also heard famvir was more well tolerated plus it tis a differenc lass thatn the other two. Acylovir is active ingredient and valacylcovir just a prodrug for it. Famvir different. I was very reluctant- famvir has a very strong smell compared to the others- my mast cells not found of that. I put some up my nose to snort and area got swollen. so didn't experiment much further.

There's not a lot of big pharma antivirals that docs are willing to prescribe for simple viruses, or to put it more accurately, not willing to prescribe others unless one has good evidence of specific serious viruses targeted by other antivirals other than these three. That's because the others are considered more toxic, and these 3 are considered benign. of course to folks like us, they are not benign at all and the supposed more toxic ones might be just fine.

Question: why did he think in your case recurrent viruses were to blame?

Thats very interesting, because my physical symptoms are mild and manageable, but since ( suspecte)long covid mental depression, depersonalization, anhedonia, has been absolute hell. Well I told dr Bansal that I had post viral fatigue in 2008. We went over my history until now. And he said he thinks it reactivations. I don't fully know how he came to the conclusion. But he thinks the reactivations are causing subtle autoimmunity

 

[Zahr82]

Yes
L0
Yes, I really didn't want to stop it, but by day 2 I felt so terrible, I literally couldn't carry on with it

Also worth mentioning i had pain in the left kidney too

 

[Zahr82]

Thats very interesting, because my physical symptoms are mild and manageable, but since ( suspecte)long covid mental depression, depersonalization, anhedonia, has been absolute hell. Well I told dr Bansal that I had post viral fatigue in 2008. We went over my history until now. And he said he thinks it reactivations. I don't fully know how he came to the conclusion. But he thinks the reactivations are causing subtle autoimmunity

Is famvir an hiv drug? If so, people take them for life

 

[vision blue]

Is famvir an hiv drug? If so, people take them for life

No. Not at all. At least not as far as I know. Famvir not an antiretroviral (HIV drug). @heapsreal knows alot about antiretrovirals

Many people take acylovir "for life" also to keep herpes in check.

SSRIs make your depression worse? no effect?

 

[Zahr82]

No. Not at all. At least not as far as I know. Famvir not an antiretroviral (HIV drug). @heapsreal knows alot about antiretrovirals

Many people take acylovir "for life" also to keep herpes in check.

SSRIs make your depression worse? no effect?

Ssri s are a nightmare for me. Im on parnate. I'm thinking maybe if i up the parnate dose I can handle the acyclovir, I don't know. Id like to try famvir though. I read of one longcovid guy recovering favipiravir too

 

[vision blue]

That med you are on is an MAO inhibitor. It would positively kill me! And i do mean likely literally. Tyramine containing foods give me blood pressure spikes that have become hypertensive crisis and ive hypothesized i might be naturally low in mao a enzymes or generally dont have enough to meet demand. As you probably know, mao a exyme is needed to break down tyramine as well as serotonin and dopamine
Guess you either are avoiding high tyramine foods or have naturally low bp so that elevations dont t kill you.

Hope your doc will give you famvir without requiring any begging cajoling or bargaining

Id like to try favipiravir too (i have a recurrent herpes virus doing lots of nerve danage). Any ways of getting some? I guess since tou had covid maybe you could get it going to japan or hungary maybe. Im guessing since i cant even tolerate a nucleotide analogue that has only one nucleotide base, im guessing this one that has two might be even worse. But one never knows. Too bad not approved in europe or us.

 

[Zahr82]

That med you are on is an MAO inhibitor. It would positively kill me! And i do mean likely literally. Tyramine containing foods give me blood pressure spikes that have become hypertensive crisis and ive hypothesized i might be naturally low in mao a enzymes or generally dont have enough to meet demand. As you probably know, mao a exyme is needed to break down tyramine as well as serotonin and dopamine
Guess you either are avoiding high tyramine foods or have naturally low bp so that elevations dont t kill you.

Hope your doc will give you famvir without requiring any begging cajoling or bargaining

Id like to try favipiravir too (i have a recurrent herpes virus doing lots of nerve danage). Any ways of getting some? I guess since tou had covid maybe you could get it going to japan or hungary maybe. Im guessing since i cant even tolerate a nucleotide analogue that has only one nucleotide base, im guessing this one that has two might be even worse. But one never knows. Too bad not approved in europe or us.

That med you are on is an MAO inhibitor. It would positively kill me! And i do mean likely literally. Tyramine containing foods give me blood pressure spikes that have become hypertensive crisis and ive hypothesized i might be naturally low in mao a enzymes or generally dont have enough to meet demand. As you probably know, mao a exyme is needed to break down tyramine as well as serotonin and dopamine
Guess you either are avoiding high tyramine foods or have naturally low bp so that elevations dont t kill you.

Hope your doc will give you famvir without requiring any begging cajoling or bargaining

Id like to try favipiravir too (i have a recurrent herpes virus doing lots of nerve danage). Any ways of getting some? I guess since tou had covid maybe you could get it going to japan or hungary maybe. Im guessing since i cant even tolerate a nucleotide analogue that has only one nucleotide base, im guessing this one that has two might be even worse. But one never knows. Too bad not approved in europe or us.

yeah, the tyramine thing about maoi s is exaggerated. I eat anything. Only ever had problems after I drank two bottles of red wine, pre ilness days. Though everyone is different. Parnate and nardil are really good meds, especially nardil. Yeah im hoping for famvir, its available at United pharmacies, but is out of stock. No idea where to obtain favipiravir. India mart may be one place. Do you have active herpes viruses?

 

[Zahr82]

yeah, the tyramine thing about maoi s is exaggerated. I eat anything. Only ever had problems after I drank two bottles of red wine, pre ilness days. Though everyone is different. Parnate and nardil are really good meds, especially nardil. Yeah im hoping for famvir, its available at United pharmacies, but is out of stock. No idea where to obtain favipiravir. India mart may be one place. Do you have active herpes viruses?

Ideally doctor bansal will prescribe, but who knows. Maybe he's worried about toxicity

 

[Zahr82]

I can confirm, Favipiravir is on Indiamart lol

 

[godlovesatrier]

We're all diffeened thars for sure.

Famvir makes me angry and gives me very bad insomnia. But then if I crash I experience terrible fatigue and brainfog for about a week or two. The crash on famvir is five times worse than how it feels off famvir. But the anger and insomnia are the worst parts. It also causes over stimulation. Last time I took it my ebv reactivated. Which isn't surprising as famvir pretty much never hit it hard enough.

Valtrex is actually my best tolerated. This week I've taken loads. Today I took 2g! For a severe ebv reactivation. I got some lower back pain after second dose which seems to have gone. Sadly I had some allergic reactions on it in the past and I do get kidney backup has to be renal calculi can't understand what else it could be. After a virus I had last week I was bizarrely able to tolerate more valtrex. But I've also been taking lots of andrographis so the two may be connected.

So there are some options. Your other options are way more expensive. Things like valcyte.

Saying that tenofovir is another option. Not too expensive. That potently hits ebv. But if like me ebv isn't your main problem that may be no help.

Good luck.

 

[vision blue]

yeah, the tyramine thing about maoi s is exaggerated. I eat anything. ?

exaggerated maybe for you.

Yes i get a presumed hsv1 infection in atypical places. It recurrs often and i bieve noe causing cns affects

 

[Zahr82]

We're all diffeened thars for sure.

Famvir makes me angry and gives me very bad insomnia. But then if I crash I experience terrible fatigue and brainfog for about a week or two. The crash on famvir is five times worse than how it feels off famvir. But the anger and insomnia are the worst parts. It also causes over stimulation. Last time I took it my ebv reactivated. Which isn't surprising as famvir pretty much never hit it hard enough.

Valtrex is actually my best tolerated. This week I've taken loads. Today I took 2g! For a severe ebv reactivation. I got some lower back pain after second dose which seems to have gone. Sadly I had some allergic reactions on it in the past and I do get kidney backup has to be renal calculi can't understand what else it could be. After a virus I had last week I was bizarrely able to tolerate more valtrex. But I've also been taking lots of andrographis so the two may be connected.

So there are some options. Your other options are way more expensive. Things like valcyte.

Saying that tenofovir is another option. Not too expensive. That potently hits ebv. But if like me ebv isn't your main problem that may be no help.

Good luck.

Thats not good, because I seem to be prone to mental health problems from antivirals. It looks like il have to ask Dr Bansal what else I could use. Because I'm not sure what he's trying to bash what with what exactly. I think he said herpes ebv and other viruses in the letter

 

[Zahr82]

exaggerated maybe for you.

Yes i get a presumed hsv1 infection in atypical places. It recurrs often and i bieve noe causing cns affects

Yeah, I would never advise someone to behave like me lol. My symptoms are mainly cns disturbance. Constantly Wired, stressed out, never tired or fatigued. Tinnitus. Coordination is off. Anhedonic, depression dissociation

 

[godlovesatrier]

I get the impression Bansal is a really lovely doctor but really isn't very sure of what he's doing. Now I could be wrong but based on the supplements he tells patients to take I don't think I am.

His doses are a bit low and I know he's getting patients to inject sub q hydrox b12. Which is an utter waste of time. I tried telling someone this on twitter and they got annoyed with me...so much for trying to help. Anyway it bothers me greatly that he's doing this. Because hydrox is a total waste of time and it irks me!! Also I don't think he tells you to take methyl folate as well right? Patients might get away without it but they may not. We have massive threads on this on PR forum if you want more info those would be ideal to read. Fredds b12 protocol thread is prob 50 pages long.

Sadly I can't remember what else he gets people to take. But I remember feeling it wasn't that great. The ldn is a good idea but in my personal case I had a awful reaction to ldn. Apart from immune effects I wonder if it's simply calming the hpa axis down more than anything.

As for antivirals he won't prescribe valtrex or famvir becuase he's worried about the effects and prob doesn't want to be struck off the medical register. You have to remember that the medical establishment in the UK doesn't really permit doctors to really help patients even privately. So he'd be kind of screwed if he used (in my opinion) the correct drugs like valtrex, tenofovir, valcyte or famvir. To hit different viruses. But he can't because he'll loose his license.

Dr Weir I know no longer prescribes tenofovir but that's because he couldn't figure out which patients to give it to.

Acloyvir is a very sub prime antiviral. We've got no record of anyone ever going into remission on it and I'm not even sure they got much better on it? @Hip can correct me if I'm out of line here.

Bansal is as I say a lovely doctor. He's taken my emails and given me advise without taking a dime. I'm just not sure he either understands or is actually able to (UK problem) do what is most up to date for the patient.

Comprehensive immune cd4/8/56 etc, igg and viral and bacterial pathogenic panel testing would be a good starting point to understand what issues the patient actually has. So the patient gets the right diagnosis and/or treatment.

I know I'm ranting a bit but it irks me massively that this is the best we have in the UK.