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About to start antivirals — pointers?

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Thank you all so much for helping out this newbie!

About to start acyclovir (400 mg 2x day) for recurrent EBV infections. I’ve been in the Lyme / mold world so long (although I treated for both I don’t think those are the causes of my issues!), I know the drill with taking those types of treatments — such as take binders 2-3x day, make sure you do detox methods like coffee enemas, lemon water, Alka selzter, skin brushing, must take a good probiotic with any antibiotic and 2 hrs away from them and on and on....

Are there similar “rules” or pointers with antivirals? My doc hasn’t given me any but he’s also a bit green to antivirals I think.

Thanks all!
 
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Acyclovir at 400 mg is a really low dosage when you consider the bioavailability of it. Which is actually good, to avoid side effects it's good to titrate up. But why acyclovir instead of valacyclovir?

Another pointer I have is: If you have severe side effects, ask to switch to famciclovir. I tried valacyclovir and I didn't like the side effects so I switched to famciclovir which is more tolerable for me personally (self-medicating but I think it was a good choice).
 
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Acyclovir at 400 mg is a really low dosage when you consider the bioavailability of it. Which is actually good, to avoid side effects it's good to titrate up. But why acyclovir instead of valacyclovir?

Another pointer I have is: If you have severe side effects, ask to switch to famciclovir. I tried valacyclovir and I didn't like the side effects so I switched to famciclovir which is more tolerable for me personally (self-medicating but I think it was a good choice).
+1

If you don't experience any positive impact from the acyclovir treatment, you should ask your doctor about moving to valacyclovir at slightly higher doses. You need relatively high doses of oral valacyclovir to inhibit the replication of EBV (2g/day would be a starting point) - that dose of acyclovir is typically used as a weak prophylactic for HSV1/HSV2 cold sores.
 
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+1

If you don't experience any positive impact from the acyclovir treatment, you should ask your doctor about moving to valacyclovir at slightly higher doses. You need relatively high doses of oral valacyclovir to inhibit the replication of EBV (2g/day would be a starting point) - that dose of acyclovir is typically used as a weak prophylactic for HSV1/HSV2 cold sores.
Thanks, yes. It’s just what my doc feels comfortable using at this point given side effect profiles. And, he’s seen results with his patients w acyclovir at this dose!
Good thing is that he’s open minded, so i imagine if after a month or so I’m not seeing any movement, he will be willing to switch me over to one of the others.
 

Zebra

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Hi, @Hoosierfans!

I take a different antiviral than you, famciclovir, but I wanted to let you know about a moderate, but unpleasant, side affect that I experienced upon starting the antiviral as well as each time I increased the dosage.

It's a little hard to describe, but it was a feeling of physical agitation/restlessness as well as tightness in the chest and increased heart rate. I also found it difficult to fall asleep because I was too "amped up."

I recall that others reported experiencing this type of reaction as well. This appears to be benign, but it was unsettling at first and quite uncomfortable at times.

It sounds like you've already "been around the block," with this illness so you probably already have a handful of remedies to counteract such side effects.

Hopefully you'll dodge this altogether, but I wanted to give you a heads up. And, for me, it always subsides after my body gets used to the new dosage.

I wish you the *best* of luck in your antiviral treatment. I hope you will keep us posted.

My best,
Z
 

Hip

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About to start acyclovir (400 mg 2x day) for recurrent EBV infections.
Dr Lerner used a much higher antiviral dose to treat ME/CFS linked to EBV: Valtrex 1,000 mg four times daily.

I think Valtrex 1000 mg four times daily is equivalent in efficacy to acyclovir 800 mg five times daily. Ref: here
 
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Dr Lerner used a much higher antiviral dose to treat ME/CFS linked to EBV: Valtrex 1,000 mg four times daily.

I think Valtrex 1000 mg four times daily is equivalent in efficacy to acyclovir 800 mg five times daily. Ref: here
Thanks Hip, yeah I read that. My doc is just comfortable using acyclovir given side effect profiles and that he’s seen results in using it at this dosage with patients. But he’s an open minded guy who is always willing to read the research so I’m sure if I don’t respond, he’ll be more than willing to move me over to one of the other antivirals, like Valtrex or Valcyte.
 

Seadragon

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@Hoosierfans I've been given a three month trial of 400mgs Acyclovir three times a day by Dr Bansal in the UK. He also feels that Acyclovir as a drug and at these lower doses is less likely to give problematic side effects.

I started taking Acyclovir ten days ago and have not had any side effects so far. I will report back if that changes.

It's advisable to make sure you drink plenty of water/fluids with Acyclovir though as another poster said earlier.
 
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Well folks Day #6 on the acyclovir and so far only positive things to report. Of those 6 days, 4 of the days were days where my skin burning was down, dizziness was down, anxiety was WAY down, mood improved and I could get out of the house at least once per day (normally I leave the house once per week).

Today I’m back down, but that’s ok — I think the acyclovir is doing some good things. Will meet with my doc next week to see how long he wants me on the acyclovir before we decide whether to bump up to Valtrex or Valcyte.

👍🏻❤💪🏼
 
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How is everyone doing on this thread?
I was on acyclovir for 6 months and it really worked for me. I had more energy overall - I could do more, maybe 10% more consistently. The zapping pains stopped. I didn't feel that my limbs were so heavy that I couldn't move. It wasn't a cure but it did help the most out of everything I've tried.

But my liver showed up bad results at 3 months that got worse over the next 3 months, and when I came off it, my liver went back to normal.

After I came off it in Dec, I developed a mild rash on my arm that is still there. I wonder if it's autoimmune - I haven't been able to get it looked at.
Also, the heavy limbs symptoms came back with a vengeance. And I have less energy overall - back to where I was before acyclovir.

I want to try going on it again, but atm I don't think I can have blood tests to check my liver unless I change my GP (I'm not at home cos of the pandemic) and that's a faff/expensive/risky to get back to my old GP just for a blood test. Got my next appt with Dr Bansal today so am going to ask about it.
 
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How is everyone doing on this thread?
I was on acyclovir for 6 months and it really worked for me. I had more energy overall - I could do more, maybe 10% more consistently. The zapping pains stopped. I didn't feel that my limbs were so heavy that I couldn't move. It wasn't a cure but it did help the most out of everything I've tried.

But my liver showed up bad results at 3 months that got worse over the next 3 months, and when I came off it, my liver went back to normal.

After I came off it in Dec, I developed a mild rash on my arm that is still there. I wonder if it's autoimmune - I haven't been able to get it looked at.
Also, the heavy limbs symptoms came back with a vengeance. And I have less energy overall - back to where I was before acyclovir.

I want to try going on it again, but atm I don't think I can have blood tests to check my liver unless I change my GP (I'm not at home cos of the pandemic) and that's a faff/expensive/risky to get back to my old GP just for a blood test. Got my next appt with Dr Bansal today so am going to ask about it.
I'm doing significantly better w/ famciclovir 1000 mg daily than I was at the start of the year, I began taking it in mid-February. I am able to go on short bike rides now (10-15 minutes) and I go for a 10-15 minute walk almost every day, neither of which I could do before without feeling like death for the rest of the day/week. Not many symptoms while sedentary other than still having occipital headaches a few times per week. Some improvement to sleep quality and I wake up feeling more rested too. Most days everything also feels more "clear", clearer vision, easier to remember things, etc. And my tolerance for showers, temperature changes, and being upright have vastly improved. I don't really have any trouble sitting/standing for long periods of time or taking showers anymore. No doctors are sponsoring it so I can't check how my liver is doing, it's a risk I'm willing to take since I literally could barely live my life 4-5 months ago. Life is actually worth living again, even though it's not 100%, which is pretty cool. I will also mention that I'm taking a lot of supplements though, including coq10, vitamin c, d, b12, inosine, turmeric, not just famciclovir.
 
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No doctors are sponsoring it so I can't check how my liver is doing, it's a risk I'm willing to take since I literally could barely live my life 4-5 months ago.
I hear that, and you'll probably be ok, but this IS a risk. Isn't there a way you could mitigate it? I didn't have any bad symptoms about my liver, so I wouldn't have known unless they tested me.

Dr Bansal said I'm his only patient that reacted badly to acyclovir with my liver, and he's treated 2-3000 people.

@Hip thanks, I'll note that down for next time.
 
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I hear that, and you'll probably be ok, but this IS a risk. Isn't there a way you could mitigate it? I didn't have any bad symptoms about my liver, so I wouldn't have known unless they tested me.

Dr Bansal said I'm his only patient that reacted badly to acyclovir with my liver, and he's treated 2-3000 people.
Wow, that's unfortunate! I hope you are able to try famvir. Pretty good odds though, that would mean less than 0.1% chance of having this sort of reaction if those numbers are accurate... and yeah it would be nice to know if there are any preventative measures that can be taken, other than a conservative dose.
 

EddieB

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How is everyone here doing? Your stories are inspiring me to give Valtrex a try. My immunologist had gave me a script several months ago, but I haven’t tried it.. My other doctors had convinced me that my problems were neurological.

Then a couple days ago, I woke up with a lymph gland swollen up big and painful. Something is definitely attacking. About a week prior, I had a major crash, got the skin blister/sores that itch like crazy, about 8 of them. Has anyone had this?

I have tested with sky high EBV antibodies, but no active infection (EBV PCR). So maybe Valtrex could help? I’m scared of making things worse, but I’m running out of options to try.
 
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How is everyone here doing? Your stories are inspiring me to give Valtrex a try. My immunologist had gave me a script several months ago, but I haven’t tried it.. My other doctors had convinced me that my problems were neurological.

Then a couple days ago, I woke up with a lymph gland swollen up big and painful. Something is definitely attacking. About a week prior, I had a major crash, got the skin blister/sores that itch like crazy, about 8 of them. Has anyone had this?

I have tested with sky high EBV antibodies, but no active infection (EBV PCR). So maybe Valtrex could help? I’m scared of making things worse, but I’m running out of options to try.
Hmm about the same as last time I posted, but it's only been 2 months and it can take a long time for the full results to become apparent, Dr. Lerner stated that effectiveness should not even be evaluated until 1 year of treatment as been completed. That being said I'm in a pretty good place, I def still have CFS but I am actually going out any doing things and living life again. The only things I can't really do are exercise or fitness-related like hiking, going to the gym, swimming, stuff like that.
 
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That great news, good for you!

Could you tell me what didn’t go well with the valcyclovir and why you switched to famivr?
Honestly, it's hard to say if how I felt on valacyclovir was due to the drug itself, or because I also started a new SSRI the same day (bad idea I know), or because of general CFS shittiness. Basically I was even more light headed than usual, had a hard time formulating thoughts and speech, and I kept having to urinate an excessive amount. And I was having increased difficulty with fine motor control, for example moving my fingers to use my phone. However like I said due to all the variables involved, I can't be certain that any of it was a reaction to valacyclovir. It could honestly just be that I had really bad CFS symptoms those couple of days, or it could have been a reaction to the SSRI instead, which I also stopped taking after about 5 days. Only took the valacyclovir for 2 days. I started famciclovir for about 2 months later and did not have any of those issues with it, but there were also less variables involved that time.
 

EddieB

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Honestly, it's hard to say if how I felt on valacyclovir was due to the drug itself, or because I also started a new SSRI the same day (bad idea I know), or because of general CFS shittiness. Basically I was even more light headed than usual, had a hard time formulating thoughts and speech, and I kept having to urinate an excessive amount. And I was having increased difficulty with fine motor control, for example moving my fingers to use my phone. However like I said due to all the variables involved, I can't be certain that any of it was a reaction to valacyclovir. It could honestly just be that I had really bad CFS symptoms those couple of days, or it could have been a reaction to the SSRI instead, which I also stopped taking after about 5 days. Only took the valacyclovir for 2 days. I started famciclovir for about 2 months later and did not have any of those issues with it, but there were also less variables involved that time.
Those symptoms do sound a lot like SSRI effects, but who knows.

The valcyclovir is burning my stomach. Getting some other feedback here, that famivir is a different drug and
may or may not cause the same problem. I’ll have to try some to find out. Good that it helps you 😁.