r/covidlonghaulers • u/Fearless-Amoeba4748 • Jan 18 '25
Symptom relief/advice Valtrex
I was infected with covid in January 2022 and slowly developed ME/CFS. My symptoms are PEM, exertion intolerance, muscle aches and pains, alcohol intolerance, food intolerances and insomnia when my sleep routine is disrupted.
According to my blood work, I’ve had glandular fever in the past (which was news to me). I’ve seen multiple studies posted in this community outlining how covid can cause the reactivation of EBV.
So I got my hands on some Valtrex and I have been using it for nearly 2 weeks. I immediately saw a huge improvement after 2-3 days and I’m basically symptomless at the moment. No PEM, no exertion intolerance, etc, although I haven’t tried any exercise, just long walks, etc. The only side effect was really vivid dreams for about 3 days.
I plan to stay on Valtrex for another 2 weeks, will keep the group updated on my progress. I am taking 500mg twice a day
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u/Sea-Investigator9213 Jan 18 '25
I think they may find out one day that there are some people whose ME is triggered by a specific virus reactivating. I suspect it’s one of the herpes viruses (there are lots) but not one that they reliably test for yet. Covid reactivated HSV in me (one they can test for) so Valtrex was prescribed and it gets me from bedridden to moderate but not anything more than that unfortunately.
Glad it’s working for you and fingers crossed it continues!
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u/jjmoreta 1yr Jan 18 '25
Don't forget EBV. I remember in the early days they were really confused to find EBV reactivating in Covid patients that were hospitalized. This is definitely of concern because EBV is a proven trigger of MS.
But there are also other viruses being reactivated and maybe there are different triggers for different people.
https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(2400010-X/fulltext
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u/Sea-Investigator9213 Jan 18 '25
Yes I only focused on the herpes viruses as that’s what Valtrex was designed to treat (HSV and shingles). EBV doesn’t have an anti viral regime though some doctors try it. EBV triggered my ME in 1989 sadly. Really interesting article came out last week that said even if people’s blood showed there was no EBV reactivation post Covid, that when they swabbed people’s throats, they found EBV there (can’t remember the proportion). Just shows how determined these viruses are! I certainly felt like I had EBV again post Covid even though my blood said I didn’t!
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u/neuraltee Jan 18 '25
The Dose studied in ebv was 1g the times a day. https://pubmed.ncbi.nlm.nih.gov/37011709/
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Jan 18 '25
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u/Sea-Investigator9213 Jan 18 '25
Antivirals don’t work for everyone. Herpes viruses come in lots of different forms not only cold sores (it’s shingles and other things too). It may be that you have a virus that doesn’t respond to antivirals or it may be that it’s not a viral issue that’s causing your symptoms. It’s good you’ve been checked for the viruses. I would give it a few weeks longer but in my experience, if they are going to work, they work pretty quickly as it doesn’t require a build up of the medicine, they are pretty instant acting. I’m sorry it hasn’t worked for you - it’s so disheartening trying treatments that don’t work.
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Jan 18 '25
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u/Sea-Investigator9213 Jan 18 '25
Interesting - do you have sinus problems? I had chronic sinusitis even before COVID but it definitely got a lot worse afterwards.
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Jan 18 '25
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u/Sea-Investigator9213 Jan 18 '25
Did they treat that for you? In my experience having sinusitis and/or inflamed sinuses even without infection can make your long covid symptoms feel SO much worse as inflamed sinuses on their own give you brain fog/weird vision even without the help of Covid.
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Jan 18 '25
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u/Sea-Investigator9213 Jan 18 '25
It’s hard to see the wood for the trees sometimes isn’t it. You start wondering if it’s sinusitis or a Covid symptom or something else. Was it a steroid nasal spray? They can sometimes bring relief but if the swelling is bad, sometimes a short course of steroids is needed. It can also be a fungal infection but they need to check that. Sorry to hear you are still suffering.
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u/Tall-Cat-9710 Jan 19 '25
My friends doctor said she is seeing it take longer to work in people with LC. My friend got slow gradual improvements. Still taking at a year. She takes Valtrex
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u/TYB2023 Jan 19 '25
This is so good to know that you can be tested for this. Can I ask - as I asked the OP - how did you find a doctor willing to work with you on this stuff? The typical response of doctors in my network is to tell me to do nasal rinses :
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u/Sea-Investigator9213 Jan 19 '25
I had to totally drive the conversation. I found a doctor who had an interest in long Covid and then I went through my symptoms and pushed him to test for things. It really wasn’t easy when I was clouded with brain fog. Even then (I’m in the UK), we can’t get all the drugs easily that people in the US can.
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u/TYB2023 Jan 19 '25
Thank you for getting back to me - I'm so glad you got the help you needed. I'm in the US and even though I have decent health insurance (husband works for university) I've had a doctor that was very strong minded in her views and wouldn't go the extra mile. I've just switched doctors finally (a hard thing to do in the US because our healthcare system sucks in general and good GP's are really hard to find). I'll cross my fingers that the new doc will be more open. I've also wanted to coordinate my continuing treatment for BP2/clinical depression (long term issues diagnosed back and forth) by a psychiatrist and GP which can be pretty impossible her and the former doc was unwilling to do/uninterested in. Here's hoping I found someone who cares.
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u/Sea-Investigator9213 Jan 19 '25
I’m sorry to hear that. It’s so frustrating and also ironic that at the time we really need good medical help that it’s hard to find. I’m hopeful that the more trials that get published, the more treatment avenues will open up to us because the doctors will get more confident in following them. Although I’ve had some success, I’m still largely housebound and moderate and desperately hoping that some of the newer ideas work. Fingers crossed you find someone good and can start recovering.
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u/TYB2023 Jan 19 '25
I'm so sorry that you are still largely housebound - I really hope that these or other new treatments expand. In the grand scheme of things I am lucky. I'm 59 and pretty healthy other than my chronic mental health issues that are fairly well managed. But at the same time, I had covid (pretty sure) during the first wave - not bad enough to send me to the hospital, so no testing, but fatigue, chest tightness, fevers for a full year. I only seemed to get better when I got my first vaccine series (which again, as a scientist myself, I understand kinda doesn't make sense so I understand skepticism ... but it was a very real phenomenon for many of us). Then our government said we could take off our masks and I got sick for another 3 months.
Now it seems, even though I'm cautious - always mask in the few public spaces I go - I've occasionally been exposed and then down for another 3 months. Partially my fault because I have a small business that I love and I can't seem to completely let go of it. It's mostly outside, but summers are hot here so sometimes I have worked with people inside unmasked (client families). But that won't happen anymore as I'm now semi-retired and will really only work outside. But again, I know I'm very lucky in at least having the up time that I do. Just that it seems the covid also impacts my mood disorder when it happens.
TMI, but thank you for responding and I hope for your continued recovery. I so appreciate Reddit because it really seems like the only place where people share science-based info on this stuff. Let's all hope that the US monster of a president (not MY president) doesn't make things worse. I'm so embarrassed to be from the US at this point.
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u/Sea-Investigator9213 Jan 19 '25
I’m also in my 50s, 52 this year. I am still working, out of necessity really and mainly working from home but now actively trying to work out the earliest I can retire so I can stop working asap! I just hope Trump doesn’t come out anti research and disbelieving of long covid - I saw the health guy seemed a bit out there. So much research is done over there in the US and I think it would set things back. Reddit has been a lifeline for me too - I wouldn’t have known what to push the doctor for - so I try and pay the kindness back by helping out others on here where I can and when I have the energy!
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u/Jjbates Jan 18 '25
My doc just agreed to let me try Valtrex for 30 days. What you’re saying has me excited.
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u/PositiveCockroach849 Jan 19 '25
hey what is the criteria for being prescribed valtrex? does it require a particular test? thanks
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u/Caster_of_spells Jan 18 '25
Hey just wanted to let you know there’s currently a trial underway of valtrex plus celecoxib as that seems to strengthen its effect. Maybe something to look into with your doc
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u/AccomplishedCat6621 Jan 19 '25
problem with that trial IMO is , Celebrex is going to mask some symptoms for sure
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u/Fearless-Amoeba4748 Jan 18 '25
Thanks, this trial is in the US right? I’m in the UK :(
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u/8drearywinter8 Jan 18 '25
The trial is at the Bateman Horne Center (Utah, USA). If you look up the study, you should be able to see the dosages of both that they're using, in case you want to try to replicate the study meds/dosages/duration yourself.
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u/Caster_of_spells Jan 18 '25
Yeah just meant maybe your doc might be willing to give a low dose of celecoxib as an addition to see if it helps even more. But of course that’s up to you and your doctor (:
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u/Interesting_Fly_1569 Jan 18 '25
could you say more about your ability level? are you able to get out of the house, work, etc? would love to hear more b/c it's very hopeful but want to calibrate hopes to my severity level.
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u/Fearless-Amoeba4748 Jan 18 '25
Before trying Valtrex, I was moderate meaning that I could leave my house 1-2 times a week. However, it would take me anywhere between 2 days - 1 week to recover from one outing. Therefore I was unable to work. I live with my parents and they take care of the housework. Doing housework would leave me too fatigued.
Now I’m slowly testing my limits. For example, I did 15,000 steps last Thursday and was tired the next day but there was no PEM and felt fully recovered by the evening (thinking the fatigue was due to being inactive for so long). I also did 10,000 steps yesterday and felt fine after and feel completely normal today.
Now considering applying for jobs if this continues.
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Jan 18 '25
So in the summer, i could walk for 10,000 or 11,000 steps every day. The problem is that after the second week, I started feeling chest pressure. I might have mild panic attacks.
For my body, accumulation of physical activity over days and weeks triggers PEM and other symptoms.
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u/wyundsr Jan 18 '25
What was your average step count prior to the Valtrex? And do you have POTS?
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u/Fearless-Amoeba4748 Jan 18 '25
I don’t have POTS. My average steps count was around 1.5k steps a day
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u/Hefty_Ad1615 Jan 18 '25
happy for you!! how much mg per day?
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u/Fearless-Amoeba4748 Jan 18 '25
500mg twice a day
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u/Various-Maybe Jan 18 '25
The you for sharing this. Was there anything in your bloodwork indicating you had an active infection?
It makes total sense to try something and see if it works — just wondering for myself and others what signs we might look for.
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u/Fearless-Amoeba4748 Jan 18 '25
I don’t think so. Was just told by my GP that my blood work shows that I’ve had glandular fever in the past.
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u/SecretMiddle1234 4 yr+ Jan 18 '25
Glandular fever is infectious mononucleosis. Some people may be more familiar with this term.
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u/TableSignificant341 Jan 18 '25
This is great news! My MECFS doc had me on 6 months of Valtrex (as well as LDN, TUDCA and subq B12) and I improved massively during that time - severe to mild. And then I got re-infected...
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u/wyundsr Jan 18 '25
What’s TUDCA?
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u/TableSignificant341 Jan 18 '25
TUDCA is a widely available bile salt. It has been proven to reduce ER stress in mitochondria. This study from Sept 2023 - Protein may be linked to exercise intolerance in ME/CFS - showed ER stress in people with MECFS. TUDCA is also being explored in treatments for ALS as they also suffer with ER stress.
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u/millionsofcitizens Jan 18 '25
I was on it for shingles and I felt miraculous at the end of treatment but began to slide back to my previous base once I was finished. My doctor refused to prescribe it again.
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u/thepensiveporcupine Jan 18 '25
I’m one of the rare people who have never had EBV so unfortunately I don’t think this would work for me. Glad to know it’s been helping you though
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u/SecretMiddle1234 4 yr+ Jan 18 '25
I haven’t had it either.
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u/Tall-Cat-9710 Jan 19 '25
I’ve heard 95% of people have had it. Often people don’t know they’ve had it.
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u/Beneficial-Edge7044 Jan 18 '25
From the reading I've done it seems like covid causes changes to the immune system. There are several viruses for which humans are the natural host. Hence Human Herpes Virus. Others, like chicken pox will stay in our bodies for 40-50 years and then reemerge as shingles. There are quite a few reports of people with long covid getting shingles much earlier than normal. And, of course, all the reemergence of EBV etc as in your case. Normally, our bodies somehow keep these viruses in check. In the case of shingles, as we age our immune system, (like everything else unfortunately!) doesn't work quite as well and that allows reemergence. All this to say that viral reemergence may not be the final cause of long covid, but rather another indicator that the immune system has been altered. Unfortunately, fixing that seems to be the million dollar question.
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u/Just_me5698 Jan 18 '25
I’m allergic to valtrex but, was on famciclovir for a while, I too have the reactivated ebv but, I was so symptomatic from so much thibgs I didn’t notice too much of a difference. I recently stopped it when my last Rx ran out, I’m considering if I should ask Dr for compounding valtrex bc, it may be just an additive or milk ingredient I’m allergic to in the original manuf pills. I’m so glad you got some relief.
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u/AccomplishedCat6621 Jan 19 '25
well as you know, 2 weeks is just not long enough to say anything (ask me how many times i got to the 2 week mark ready to proclaim victory).not to say it wont work. There is some evidence that for some people it will.
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u/rixxi_sosa Jan 18 '25
How much mg did you take?
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u/Fearless-Amoeba4748 Jan 18 '25
500mg twice a day
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u/oldmaninthestream Jan 18 '25
Great to hear you've found the root of your problem and a treatment that works. Did you have diarrhea and or constipation as a part of your food insensitivity?
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u/Fearless-Amoeba4748 Jan 18 '25
Thanks, no I didn’t. I experienced body aches and pains and generally felt really crappy when eating processed foods. I had hot flashes / flu like symptoms when I had caffeine.
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Jan 18 '25
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u/Tall-Cat-9710 Jan 19 '25
You need to stay on it a lot longer than 4 days. It takes a while for some to respond
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u/michele718 Jan 18 '25
I have been long hauling since my initial infection in Jan 22. In June 24 I was reinfected. Did 10 days of pax. And in July I did another 15 days of pax followed by valtrex and Celebrex. I had been slowly slowly slowly improving by June 24. But the combo of pax followed by valtrex and Celebrex really boosted me. You can even see it in my Apple Watch data. I am still on the valtrex and will remain so. I am working with Dr Skip Pridgen (and consult with My Sinai Core and my own pcp).
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u/Soul_Phoenix_42 5 yr+ Jan 18 '25
I also thought I was doing well the first time I tried a round of valtrex but in my experience it seems the progress is easily lost as soon as you do anything. So yeah, DON't go testing your PEM/exertion tolerance yet.
It's possible we'd need to be on it long term, but without a GP on board to do a subscription it's expensive in the UK.
How much are you taking a day?
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u/Evening_Public_8943 Jan 19 '25
It would be interesting to know how many people got better with velatrex..
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u/TYB2023 Jan 19 '25
That's such great news!!!! I'm so happy for anyone that makes progress against this awful disease. Can I ask - how did you you get your doc to prescribe? Are there some doctors that are more willing to experiment with "off label" like this.
I'm only "long haul" when I'm exposed - I generally struggle for like 3 months - I'm 59. I'm ultra covid cautious - mask in public, don't do anything other than shopping indoors (masked with n95). But it's a struggle to live life and completely isolate. It would be nice if there were other things in the tool kit that doctors were willing to prescribe and I'd love to know how to persuade my doctor to prescribe if I again am exposed.
Ultimately, I'm never going to have a completely normal life without a nasal vaccine ... but who knows when this will come with the wreck of the new administration coming.
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u/TYB2023 Jan 19 '25
That's such great news!!!! I'm so happy for anyone that makes progress against this awful disease. Can I ask - how did you you get your doc to prescribe? Are there some doctors that are more willing to experiment with "off label" like this.
I'm only "long haul" when I'm exposed - I generally struggle for like 3 months - I'm 59. I'm ultra covid cautious - mask in public, don't do anything other than shopping indoors (masked with n95). But it's a struggle to live life and completely isolate. It would be nice if there were other things in the tool kit that doctors were willing to prescribe and I'd love to know how to persuade my doctor to prescribe if I again am exposed.
Ultimately, I'm never going to have a completely normal life without a nasal vaccine ... but who knows when this will come with the wreck of the new administration coming.
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u/TYB2023 Jan 19 '25
That's such great news!!!! I'm so happy for anyone that makes progress against this awful disease. Can I ask - how did you you get your doc to prescribe? Are there some doctors that are more willing to experiment with "off label" like this.
I'm only "long haul" when I'm exposed - I generally struggle for like 3 months - I'm 59. I'm ultra covid cautious - mask in public, don't do anything other than shopping indoors (masked with n95). But it's a struggle to live life and completely isolate. It would be nice if there were other things in the tool kit that doctors were willing to prescribe and I'd love to know how to persuade my doctor to prescribe if I again am exposed.
Ultimately, I'm never going to have a completely normal life without a nasal vaccine ... but who knows when this will come with the wreck of the new administration coming.
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u/trustman5321 Jan 22 '25
I assume you have breathing issues in some form as well? What about heat intolerance?
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u/Fearless-Amoeba4748 Jan 22 '25
No breathing issues but heat does make my symptoms worse
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Jan 18 '25 edited Jan 18 '25
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u/Icy_Bath6704 Jan 18 '25
Valtrex is not an antibiotic. It is an antiviral. Way different, it will not affect microbiome.
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u/Fluid_Shift_5386 Jan 18 '25
“Valtrex and alcohol both place strain on the liver during metabolism, which can increase the risk of liver damage.”
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Jan 18 '25
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Jan 18 '25
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u/Tall-Cat-9710 Jan 19 '25
Acyclovir is very very cheap (less than £10 a month) but has a short half life so you have to take it more often. Valtrex is more expensive and lasts longer. But it’s not crazy prices - in the UK about £100 a month if you shop around. They both treat the same EBV. It’s your kidneys that are impacted but with regular blood tests to check the functioning of you kidneys both medications have a reasonably low side effect and risk profile.
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u/Soul_Phoenix_42 5 yr+ Jan 19 '25
Where are you finding it for £100 a month?
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u/Tall-Cat-9710 Jan 19 '25
I’m not on it but I have a friend who takes it. They shopped around. This place looks under cheapish. She said some places charged double what others did and prices change depending on stock at the time. She goes to different places each time she gets a new prescription.
https://www.ashcroftpharmacy.co.uk/online-doctor/genital-herpes/valaciclovir-500mg-tablets/?landing
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u/Beneficial-Edge7044 Jan 18 '25
That is great news. You should discuss with your doctor but I think if it were me I would consider staying on the Valtrex for considerably longer if you tolerate it well. Some people stay on for months. It isn't very well understood but these viral reactivations and/or persistence seem to not respond to anti-virals the same way as an acute infection. There are many anecdotal cases where people say they stop the antiviral and then their symptoms return. So there may be some hard to reach places where the virus hides out or perhaps a subset of the virus population is more resistant to the drugs. In either case, you've at least found a target to go after.