Continue taking Acyclovir? Other forms offer relief?

[RingofFire]

Hey all,

I've been around for awhile now, unfortunately. I was diagnosed back in October of last year and have had recurring symptoms ever since.

I definitely have a positive HSV-2 diagnoses as I have been tested 3 times in the last year and I had very high IgG levels of ~19, ~13 and the last one did not have an IgG, but just had a positive or negative result, and it was positive.

I finally visited an Infectious Disease specialist and it was a complete waste of money. They basically did a bunch of blood tests, that now I have to pay for. I hoped they could offer some additional treatment to help me, but they just sent me out the door with the same information I already had.

I also spoke online with Dr. Handsfield  an STD expert from the University and Washington, and both he and Terri Warren agree that my symptoms can't be caused by HSV-2, but they cannot speculate what it would be from either.

I don't see how this is possible. Multiple people on this thread and on Reddit, speak constantly of the thigh burning, pelvic pain and nerve pain, but they still deny that my symptoms are associated with HSV-2. 

I've been to my GP about 7 times this year, a Urologist, ID Expert, spoken online to a Urologist, Neurologist and everyone says it's not from the H. I just can't see how it could be anything else.

I'm supposed to get a cystoscopy Thursday, but I feel like I'm throwing away and it might even cause me further pain.

I've been taking Acyclovir 2x daily 400mg. It did seem to help with the groin pinching, tingling, and inner thigh itching, although my symptoms fluctuate drastically on a weekly basis. Right after the weekend on Monday, nerve pain in thighs, genital tingling, itching, pinching, are at their highest. Usually a 5-6 level compared to a 10, last October. By Saturday, I'm feeling almost 100%, but if I have a big weekend of drinking with friends, it comes back like clockwork and I have to pop pain killers just to make it through Wednesday.

Anyhow, I'm at a loss as to what it could possibly be. I don't see how so many experts can deny the possibility that this is what it is. I almost feel like I'm being tricked or something! I have no other health issues and I have been tested for all other stds and have had many blood and urine tests, all clean except for the hsv-2.

I can't tell if the Acyclovir is helping or not, but I do take it, because I want to make sure I don't pass it to anyone, even though I don't have a regular partner at the moment.

Anyhow, I guess I posted this so that other people can see that it definitely seems to effect everyone different. If anyone has had any luck with treatments besides Acyclovir, let me know. It would be nice if this would end some day. It's not the diagnosis that bothers me so much, but the weekly pain, that just sucks.

I've tried Valacyclovir, and several antibiotics(In case it was something else) they also prescribed gabapentin and another Antidepressant, but I don't like the idea of them so I've yet to try them out.

They also recommended Pelvic Floor PT, but I haven't tried it. 

Maybe I should just quite drinking and see how that goes (Sigh)...

 

 

[Flowerteacher55]

Hello,

I am so sorry that you are experiencing this struggle and that you are not getting answers from medical professionals. It sounds frustrating and I am so sorry about this. It seems like it could be from the HSV, or perhaps it is neurologically-linked. Have you seen a neurologist? Also, maybe cutting out alcohol would help-- It's worth a try! 

I am praying for you! 

Stay strong and be kind to yourself. Keep your head held high and stay positive. You are a warrior. Everything will be okay ❤️ !

Blessings!

grace

[RingofFire]

Thank you @Flowerteacher55 I am going to try not drinking for awhile to see if that helps.

 

[Seeker1960]

Hi @RingofFire, the medical people you mentioned are supposed to be the top people in the study of HSV. Unfortunately, they don't know what others know including the people who are working on the latest vaccines and therapeutic treatments . HSV affects the nervous system and if it travels to the CNS you can experience  nueropathy like I do. Burning butt, leg burning, itching and other stuff involving the nervous system. It calmed down but recently showed up after I took the last covid booster. So you're not crazy your symptoms are related to HSV. Do things to strengthen your immune system that could help.

[RingofFire]

Thanks, I appreciate the feedback. How long have you been dealing with this and is is HSV-1 or 2?

 

 

[Seeker1960]

Hey @RingofFire I've had GHSV1 for 6 years now and it started with atypical symptoms. 

[BayArea22]

Hi @RingofFire,

 

Reading through your posting history reminds me very much of my experience.  
 

I know with 100% certainly I did not have HSV earlier this year. I know i received oral sex from the first new partner I’ve had in years in September.  I know today i test positive for HSV1 and i also know that after years of perfect health that roughly 2-3 days after the oral sex a slew of various issues have plagued me.  Since that date i have had two separate fungal infections around my anus (first such experiences of my life), I’ve had the first notable acne breakout of my life since i was a teenager decades ago, and most impactfully I’ve had significant nerve type pain and discomfort on my penis, testicles, anus, buttocks and upper thighs. Occasionally my lower back as well, although not nearly as frequently.  When seated the symptoms are significantly worse.  What i have yet to experience is a rash, blister, lesion or ulcer.  
 

Now my doctors and the herpes experts say none of these symptoms are herpes.  
 

I’m here to say they are probably right.  These aren’t “symptoms” of herpes, however, they are most likely issues that herpes can lead to.  Like if my tire blows out, that could cause my car to flip. That doesn’t mean it’s normal or frequent, but clearly it makes that more likely it could happen.  In other words there is a link.
 

Thankfully my urologist has referred me to a pain management doctor and advised a nerve block on the pudendal nerve to see if that eliminates the nerve pain, even if temporarily. If it does that seems likely to be a diagnosis of pudendal neuralgia, which the NIH shows can be triggered by herpes simplex.  Again, maybe not a symptom of herpes, but linkage.
 

I will definitely come back to this chain with my experience post nerve block.  

[Seeker1960]

Hey @BayArea22 You symptoms are somewhat similar to my own as are the circumstances as how I was infected were similar also. I was infected about 7 years ago. I've never had a typical outbreak. I had all the symptoms that your are have and much worse actually. I had a lot of burning and thought I had pudendal neuralgia. I was treated for that as well. Let me save you the trouble of going through of whatvI went through. Genital HSV1 is not very understood by most of the medical community or so called experts. If you read around you will find many of us who suddenly got these symptoms after a new sexual encounter, were HSV negative prior and now are HSV positive with these symptoms. It is an atypical manifestation. HSV1 infects the nervous system and affects all those nerves in the ano-genital tract and beyond. The symptoms get better as our immune system learns how to counter the virus.

Sorry that you are in the same situation that I find myself. The good news there are therapeutics and treatmentsbon the horizon. Maybe in 5 to 7 years there will something that works better than what we have available now. 

[RingofFire]

Hi @BayArea22 Thanks for posting! What is the nerve block? Is it a medication or like an injection?

Let me know if you've seen any improvements!