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Avatar universal

Peripheral neuropathy due to Antiviral medication

Hello, so i was prescribed two different antivirals over the course of 4-5 months. (Acyclovir and valcyclovir. 14 day span of each). Originally I was prescribed valcyclovir 800mg 5 times a day. Shortly after I began having tailbone pain and eventually tremors. I was told to continue the drug until it’s course was over. As my doctor suspected I had hsv 1/2. I then started getting tingling and then whole body peripheral neuropathy.
Unfortunately my doctors did not listen to the confirmatory testing (all came back negative including western blot) and continued  prescribing me medications. Making the results worse and worse.

I want to know how to fix this. As I am 27 and my life has come to a halt with all of the pain and discomfort.
Does anyone know anything about this being a side effect? I’ve read a few short articles but they aren’t really helping me understand.
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207091 tn?1337709493
So first, do you think it was acyclovir 800 mgs 5 times a day?

That's a VERY high dose. Way too high. The dose for acyclovir for 5x a day is 200 mg 5x a day.

Acyclovir comes in 200, 400 and 800 mgs. Valacyclovir comes in 500 and 1000 mgs.

In any case, that shouldn't cause permanent nerve damage. While some people do report neuropathy like symptoms while taking it, it usually resolves when stopping it.

Have you seen a neurologist? Had any imaging done - like an MRI or CT scan of your spine?

Are you diabetic? Have any autoimmune disorders? Have they done any other blood work?

There are lots of possible causes of PN - herpes is near the bottom  of the list, and herpes meds are probably lower.


I'm glad you've ruled out herpes as the cause, but make sure your doctors are running tests instead of just throwing meds at you.
Helpful - 1
I knew you’d respond to me! We actually talked about my herpes experience in the beginning of the month. You’ve been so much help! And yes. I have had several X-rays, MRI’s, CT Scans, Cat scans, ultra sounds, every type of blood and urine test.

Doctors have no idea what the cause of it is, it started within days after the medication.
Of course - I recognize your name now. :)

Some cases of PN are idiopathic, meaning they don't know the cause. I mean - I say it's not the meds because it would normally resolve after stopping the meds, but you were on such a high dose. I don't know if they know what happens on that dose. The PN effect from antivirals isn't well understood as it is.

Did they do any nerve testing?
It’s definitely a mentally challenging position to be in. Because I was diagnosed with Covid a week before that interaction… They also ordered an emg two months ago. It won’t be performed for 2 more months as all of the local hospitals are books for months out!

Tell me, would any other std cause something like this? Something they dong test for? I’ve been tested for the majority of stds. But not cmv or the newer types that I’m reading about.
Ohhh covid.



And because you had pain in your genital area - https://news.northwestern.edu/stories/2022/03/covid-infects-penis-testicles-and-prostate/

No STD would cause this. But covid could.

I am not an expert in long covid, except that I have it, and my symptoms vary almost daily. Some days, the shortness of breath is a lot worse than the muscle aches, and the next, the palpitations are worse and I have no muscle aches. I can go a week with no back pain, and then suddenly, it's the worst thing I have.

I don't have PN, but everyone varies.

I'd go with covid as a cause way before an STD.
Thank you! Sorry for the late response. So the timeline was Covid two weeks in November. Only symptoms was shortness of breath, loss of taste and smell, coughing, congestion and muscle/joint pain.  Three days after being cleared I had the incident. (The two women I saw were Asian, and the woman that I had intercourse with actually works at the local massage parlor that does happy endings).

Within days I had burning and itching.
Within a month I had bad pain in my genital area (non visual symptoms). The pain went away after a urologist told me I have nothing and I assumed it was in my head.

The tailbone pain and inner thigh/buttock pain happened in February. But I cannot remember if that was after I read something online about prodrome symptoms.

After telling the ID doctor about my symptoms she instantly ordered 800 5x a day valcyclovir. Then tested me three days after.

I changed soaps, and took different antibiotics and other creams etc.
The neuropathy started shortly after.

Reason I expected it to either be mental, or if real then from the medication or hsv.

But the test I had sent to WB came back negative.

I also have extreme urgency to use the bathroom and a vibration now in the perineal area.
It's interesting that you say "only symptoms" for covid, and then list 5 of them, 6 if you count loss of taste and smell separately.

You had more covid symptoms than I did, and I have long covid.

You don't have herpes. That's not what is causing your PN. It could be from the antivirals, but that's really unlikely.

Is there some reason you are attached to it being from this incident, either indirectly or directly?
It’s because of guilt. Unfortunately it was a mistake I made while in a relationship…
I instantly regretted it because I never once had intentions of it. After several years being with the same woman, who’s my best friend. This didn’t make any sense. So I became instantly upset with myself and thought I deserve whatever comes with it. I told her everything and she forgives me, I’ve had to see therapists and everything. But the guilt ate me alive and made everything feel worse.
I had every symptom of hsv2 besides the ulcers. But the burning, freaking urination, tingling, Abdominal pain, etc. and when the doctor told me it was hsv I about lost it. Became extremely depressed and anxious. Couldn’t function. Then the rest made it worse. It’s still hard to believe I don’t have it. But I am trusting the tests and Terri.

See after Covid, I felt great. For 1-2 weeks I felt so much better than I did during Covid. That I thought no way is this from Covid. And now I’m here months later… the neuropathy gets worse daily. I can’t sleep much anymore because of it.
I didn't get long covid symptoms for a month after.

And is there any way some of this is anxiety? It's NOT herpes. You tested neg for it, and for all STDs. You have to forgive yourself.
I am trying to message you directly but it will not work. The code it’s requesting is incorrect for some reason.
Check your messages.
Avatar universal
This is me being honest with you.
Your PN is most likely caused by the herpes. I found out with IGG test I have both types but genitally manifesting.
A year later, I was diagnosed with herpes simplex encephalitis and couples of months later I had peripheral neuropathy. I have had blood tests, scans, MRI, EEG etc.
The doctor made me understand that my neuropathy was caused by my herpes. My case I wasn't taking suppressive meds, I only took antivirals when i had outbreaks, normally 400mg 3x daily, once the outbreak clears, I take 400mg 2x then I stop a couple of days later and get on L-Lysine.

Male, athletic, not immunocompromised, had no chronic illness prior to having my first herpes outbreak I was 29 years old when it happened and I am 31 now dealing with persistent neuropathy. Pain, burning sensation, numbness(sometimes), pin and needless(sometimes), blurry vision ALL IN ONE SIDE OF MY BODY.
Surprise, surprise, the same side i do get my genital outbreaks, all in the right side. At the peak of my flare ups, it makes me extremely fatigue. I am only dealing with reducing the pain etc. The virus ****** up my nerves and thats one of the unsaid secrets about the virus. I was gaslighted on reddit for my observations esp when my issues started and it turned out herpes was caused me encephalitis and neuropathy.
Helpful - 0
I’m sorry, I thought I explained that I had very low positive IGG results (under 2) and confirmatory testing was negative. Both from labcorp and western blot. The western blot was my final testing. Which was 7 months after “exposure”.

I never had sores or ulcers. But had what I thought was other symptoms until the doctors told me I did not have herpes. It all went away about 85% except the neuropathy.

I did read however that antivirals can sometimes trigger neuropathy with people.  And sometimes antivirals can speed up the process for those who are prone to sever side effects.

What made you test for herpes originally? And did you have low or high positives? Did you receive a western blot as well?
I'm sure this person thinks they are being helpful, but you have tested negative. You don't have herpes.

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