Unusual outbreaks - A bit of clarity finally!

[J1010]

Hey everyone, 

ok so I've posted a few times over the last year or so, I had a really bad outbreak back in Dec 21/Jan 22 it was worse than my first outbreak, fever for days, entire body tingling/buzzing along with a whole lot of other neuro/sensory symptoms that continued on and off for months. I also had some strange mild vision problems in one eye still unsure if this is related or not.

I've seen multiple neurologists, sexual health doctors and consultants, my GP (waste of time) and just last week a consultant at infectious diseases who was very helpful! 

So I was getting regular outbreaks in two areas, behind the head of my penis which was swabbed HSV2 pos which appears as one single ulcer, and on one testicle that I've not had swabbed which is much more mild almost not noticeable to look at but hangs around for 4-8 weeks at a time even with daily acyclovir suppression.

I got what my GP told me was shingles on my back, then a couple months later something very similar but milder on my chest, then foot, inner elbow, and at the bottom of my back, again mild but very annoying and itchy. Anyway fast forward numerous tests and MRI scans... the infectious diseases doctor seems to think it's all HSV 1/2 going by the pictures I have and how I describe it. He's told me that autoinoculation is not the sole cause of HSV showing up on a different area of the body, that in fact HSV can travel around the system and pop up anywhere but TYPICALLY it reappears at the site of original infection, this is text book HSV.

I've been on acyclovir suppression for around a year now and was due to stop, he's wrote me up for another 12 months, however as things have calmed down a lot I think I'll come off it and see how I go.

The doctors previous have literally scared me half to death, throwing all sorts around, MS, syphilis, HIV, autoimmune problems etc, etc... all of this started 2 weeks ish after my second covid jab (I'm not anti vax or pro, I just had the jabs and got on with life) he said it's very possible that the covid vaccines have played a part in the way HSV and my body are reacting, they know the vaccines have had different effects on different people and changed the way some illnesses and immune responses work.

If you're having crazy problems with H, don't worry it'll calm down, be rational don't read too many horror stories or start self diagnosing all kinds of crazy diseases! I had a really tough time mentally for a year or so with all of this, I only wish they'd have referred me to ID sooner.  

[Kob456]

Thank you so much for posting this. This really helps me. I’ve had hsv2 for almost 3 months and am on my 3rd outbreak. They last 4 weeks and appear also in two places at the same time. This didn’t happen on my primary outbreak but the first recurrence I had I got sores (like small cuts through a small bump) on my vagina. At the same time I had vesicles on my right finger. Then once those were clearing about week 2 I get spontaneous cuts up to 1 inch long in my bum or skin just above. My current 3rd outbreak I’ve got the sores red sores or tiny cuts in my vagina and bum and a small cluster of vesicles on my left wrist. I’ve been on the suppressive meds for over a month now and I’m disappointed as it’s not helping. My doctor just told me to up the dose for a couple days and then referred me to a dermatologist for a second opinion.

So based on your post, sounds like this can just happen to some people. Sucks. I just want some relief for more than a few days at a time. I do get shooting nerve pains all over my body often too. 
 

I’m glad yours is settling down after a year  and gives me hope mine might follow this pattern too. 

[herp-etology]

Thanks for this post as well. I had my second outbreak start about 4 weeks ago and I'm still dealing with it. It's pretty severe. I haven't had one in over 6 years when I had my first outbreak and I was diagnosed with herpes. The tingling and burning is happening primarily on my face and scalp but also my thighs and calves. I also have hsv-2. I'm on antivirals and it hasn't helped. I haven't had a consistent night of rest in over 4 weeks. I'm scheduled to see an infectious disease doctor on Monday. My mind has gone down a rabbit hole. Your post helped to ground me some. Thanks again. 

[ashleytiffania]

Hey @J1010,

I am in a similar boat as you were. I have been having symptoms for 6 months now with non-stop itching, burning, tingling. The itching is so intense that I can't even help myself and this I think has made my condition worse. I too was starting to freak out that my partner (who gave me genital HSV 1) maybe strayed and caught syphilis or another STD and gave it to me recently because my symptoms are just so bad and I have found pus too down there. I have been in a sad place and your post brought me some hope. 

Is there anything that the infectious disease doctor told you to do to get better? Any advice would be highly appreciated, thank you in advance!!