Trying Valacyclovir or Acyclovir on my own -bad idea or worth a try?

[Mimicry]

I just noticed that pharmacies here in Finland sell both Valacyclovir (500 mg x 8 tablets) and Acyclovir (200 mg x 25 tablets) over the counter for herpes simplex infections. Apparently I don't have an active EBV infection but I have elevated IgG antibodies against it so I had it at some point. (I also have latent HSV1 but it hasn't caused any trouble in years).

I've had ME since 2008 and am somewhere between mild and moderate, I can be upright for 3-4 hours a day without triggering PEM but obviously I'm unable to work. My illness fluctuates a lot though, and a year ago I was able to tolerate 2 hr walks several times a week and even jogged a bit (15 mins max, I used to run a lot before falling ill so it was amazing being able to do that again!). I started LDN in December 2021 and I feel like it has made some of my symptoms worse and has severe side effects, and I've had to be very careful increasing the dose. I'm trying to slowly get it up to 4.5 mg and see if it helps once my body gets used to it (currently at 2 mg).

I've read here that LDN can jumpstart the immune system to fight latent viruses hiding in the body and that might be one reason why I'm feeling so ill. So I'm wondering if there's any point trying antivirals on my own? I know for a fact that the doctors here are not willing to prescribe those unless there's proof that I have an active infection going on. The OTC meds are not cheap though and I don't have too much extra money. I wonder if there's any point trying them.

Thank you for any answers and insights!

 

[perchance dreamer]

@Mimicry, I can't answer your question about whether it's advisable to try an antiviral on your own, but should you proceed, I'd go low and slow.

I've taken 500 MG of Valacyclovir for years, and it's prescribed by my doctor. What I've noticed is that 500 MG is as high as I can go without getting insomnia. I really don't notice effects with my daily Valacylovir. As I remember, my EBV titers on the test were at the very highest measurement. My doctor said that was either accurate, or my titers exceeded the top of the testing range.

 

[ilivewithcfs]

I want to share my experience with valacyclovir just in case it might be helpful to someone. It is one of the things that actually helped me long term. I took it on my own, I have no other choice,but to search for treatments myself. Doctors not only are unable to help, most of them don't even know what cfs is. I took it for a couple of months until it started to give me insomnia. I experienced significant improvement that stuck with me long term.

 

[BrightCandle]

I have tried valacyclovir, Valtrex and Solosbuvir and they all give me insomnia and no benefits. They seem relatively short lived in my body so if you do react badly stopping them seems to get you over it the next day. I probably spent half of the last year on antivirals of one type or another. I don't think its the answer for me.

 

[godlovesatrier]

Valtrex helps me a lot, my cognitive function improved within the first dose. But I spent probaly 3 months feeling like crap herxing on it before I finally started to really improve. My baseline is more solid now, I believe I crash less easily and fluctuate less. But I am currently stressed af and that's messing me up. Even so I believe valtrex prevents me from going backwards.

Famvir on the other hand gives me terrible insomnia, so I never tolerated it enough to take it longterm. The downside with valtrex for me is kidney stones, my kidney function is fine.

 

[heapsreal]

Seen as though theres no specific treatments for cfsme and you're finding it impossible to find a Dr to work with to try antivirals. You have to weigh the risk to benefit, but in general antivirals like valtrex and famvir a quite safe in people with good liver and kidney function and antivirals are used long term safely in other conditions. I think if your getting regular blood work to keep and eye of general health markers like liver and kidney function, you should be fine.

Other health preventative measures like taking nac for liver health and astragalus for kidney function can help reduce any potential long term effects from antivirals.

Also give it several months before you make a decision on if it's helping or not. They aren't generally quick in reducing cfsme symptoms etc.

I'd choose valacyclovir/valtrex over acyclovir as they are basically the same drug but valtrex has a longer half life and needs to be dosed less often.

Good luck

 

[lngnstrng]

You have to weigh the risk to benefit,

well i second this. what got me on the track to being cured was trying things with REASON. you can still fail and get worse with trying things. you never know. its a personal decision and i decided to take the risk.

 

[greyheron]

Valtrex makes a huge difference in my life. With it, and an anti-inflammatory, I can get out of bed and go to the grocery store every once in a while. It helped with: IBS, tonsil pain, lymph pain and many other uncomfortable bodily feelings. Took about 3-6 months for me to start noticing the difference though, so don't give up on it prematurely. It didn't solve the fatigue completely(only helped), but it's worth it for many of the other symptoms. I'm currently on a dose that's higher than the "maintenance dose", and I experience no side-effects. My general practitioner prescribes it for me.

 

[CFS_RPH]

I just noticed that pharmacies here in Finland sell both Valacyclovir (500 mg x 8 tablets) and Acyclovir (200 mg x 25 tablets) over the counter for herpes simplex infections. Apparently I don't have an active EBV infection but I have elevated IgG antibodies against it so I had it at some point. (I also have latent HSV1 but it hasn't caused any trouble in years).

I've had ME since 2008 and am somewhere between mild and moderate, I can be upright for 3-4 hours a day without triggering PEM but obviously I'm unable to work. My illness fluctuates a lot though, and a year ago I was able to tolerate 2 hr walks several times a week and even jogged a bit (15 mins max, I used to run a lot before falling ill so it was amazing being able to do that again!). I started LDN in December 2021 and I feel like it has made some of my symptoms worse and has severe side effects, and I've had to be very careful increasing the dose. I'm trying to slowly get it up to 4.5 mg and see if it helps once my body gets used to it (currently at 2 mg).

I've read here that LDN can jumpstart the immune system to fight latent viruses hiding in the body and that might be one reason why I'm feeling so ill. So I'm wondering if there's any point trying antivirals on my own? I know for a fact that the doctors here are not willing to prescribe those unless there's proof that I have an active infection going on. The OTC meds are not cheap though and I don't have too much extra money. I wonder if there's any point trying them.

Thank you for any answers and insights!

Did you try it and if so did you get any benefits?

 

[CFS_RPH]

Valtrex makes a huge difference in my life. With it, and an anti-inflammatory, I can get out of bed and go to the grocery store every once in a while. It helped with: IBS, tonsil pain, lymph pain and many other uncomfortable bodily feelings. Took about 3-6 months for me to start noticing the difference though, so don't give up on it prematurely. It didn't solve the fatigue completely(only helped), but it's worth it for many of the other symptoms. I'm currently on a dose that's higher than the "maintenance dose", and I experience no side-effects. My general practitioner prescribes it for me.

Can you tell me what dose that you used and how long to see effects?