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J1010

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Everything posted by J1010

  1. Hi @LovelyB91 yes I finally managed to see one this year (after 2 years + of being passed around various doctors and consultants!) He was a great help, he's prescribed a further year of suppression (Acyclovir) also told my GP to prescribe me with Famciclovir to take if I get an outbreak whilst on suppression. Worth noting I've still had a few mild outbreaks in unusual places whilst on suppression this last year but nothing compared to what I was getting. Hope you get sorted, it'll calm down.
  2. Hi @very_obvious_throwaway firstly I understand completely how you're feeling, around 18 months - 2 years ago I had what is now believed to be an OB on my back, then a month or so later at the top of my chest and a few frequent OB's at the top of my butt. Prior to this I'd only had OB's in the same area on my genitals HSV-2. I also encountered the most severe OB I've ever had which again my GP assured me only happens on the 1st OB. That information is not 100% accurate at all. At the time my GP and sexual health clinic led me to believe this was shingles or auto-inoculation due to a possible auto immune disease (in the middle of my back?!), fast forward to now and an infectious diseases consultant I saw a few weeks ago is quite confident this was HSV-2. So to back up what @mr_hopp said above it can travel, and most doctors and information will give the text book norm. I've not had an OB in those areas since. The good news is, things have calmed down for me now, a LOT! But I did have a rough 6 months or so, I imagine some of that was due to how stressed I was with all of the wrong information I was being given at the time. Try to stay calm ignore it as best you can, it will pass. Coincidentally this all happened a few weeks after my COVID vaccine, which the ID consultant said may or may not have been a factor, I definitely wasn't the only person he'd seen with new and unusual problems related to HSV in recent times.
  3. 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.
  4. Thank you for the kind words, hopefully will get to the bottom of these problems soon!
  5. Hi, thanks for responding I'll drop you a message during the week if thats ok, I've just come home from a couple of weeks away, appreciate it thank you!
  6. Hi all, really interested to hear from anyone thats been diagnosed with Mollaret Meningitis, had a really unusual 7 months with HSV-2 and had a lot of things ruled out but my neurologist mentioned this is a possibility? thanks J
  7. Hi Minerva, did you ever get diagnosed with Mollaret Meningitis? I'm currently having a whole lot of problems with HSV 2 and neurological problems, many things have been ruled out HIV, syphilis, MS etc... a neurologist I saw did mention Mollaret Meningitis but said he'd need to do a lumbar puncture to fully diagnose and as my symptoms were getting better he was reluctant to do this. Since a very nasty outbreak (not primary) in January I've been on and off daily acyclovir, when I stop taking it many of my symptoms return when I start taking it again they fade.
  8. @Stars-and-Stripes I'm not sure if you've read my original post on here, my problems started last November 2-3 weeks after my second Covid vaccine, I got shingles (I've since read there is medical evidence the vaccine is linked to reactivating shingles) that cleared up and then all these problems and constant OB's started end of Dec/Jan, so I for one will not be having any more boosters given that the covid strains seemed to be less aggressive than they originally were. As far as I know thats the only medication available in the UK but the neurologist did say to go back to the GUM clinic and ask if there's any other options available. The neurological symptoms have calmed down for me now, they come and go and are much milder than they were. I'm staying optimistic, as although the OB's keep coming they are much milder each time so at least thats something! Stay positive and try not to worry about it too much (easy said I know), I hope you're feeling better soon!
  9. Hey all, quick update with my situation I had a follow up with the neurologist yesterday, all blood tests came back negative, MRI scan was clear. He said there is a possibility HSV2 is causing the neurological problems I'm having, he also said there's a possibility I have/had mollaret's meningitis but at this point wouldn't recommend a lumbar puncture unless symptoms get worse. I've been on Acyclovir daily pretty much since all this began in January and that's obviously the treatment for mollaret's so its very possible. Outbreaks are still persistent, pretty much as one heals another comes along, they are pretty mild OB's but still very frustrating as it seems to be never ending! Hope you're all good!
  10. Also interested if there's any update on this, or anybody else thats had similar things going on. Since December I've had a terrible time with HSV2, had the worst outbreak to date and had all kinds of weird neurological things going on too, tingling/buzzing in my legs (started in one foot) slight blurred vision in one eye. Also had problems getting doctors to listen to me, when my GP did start to listen they suspected MS as all my bloods were normal apart from vitamin D which showed slightly low. I paid private and saw a consultant neurologist yesterday and am having an MRI scan next week. I've had 2 full STI screenings in the last 2 years all negative results but decided to test for syphilis again yesterday as that can affect vision and nerves etc...
  11. Hey, so this is my experience to date and time line: 1st OB 2 years ago, following that I had 1 OB approx every 6 months, nothing major I usually get one single ulcer/lesion that takes 3-4 weeks to fully heal with very little pain or itching all in same area nothing at all anywhere else on my body. July 2021 - 1st Pfizer vaccine August 2021 - Itchy lumpy Rash appears on my inner elbow disappeared within a week, didn't think anything of it presumed an insect bite as it was summer. October 2021 - 2nd Pfizer vaccine November 2021 - Itchy cluster of small fluid filled blisters appeared on my upper back approx 2.5 inch x 1.5 inch area, diagnosed by photograph by my GP as shingles. Other than itching I had no severe pain etc that's associated with shingles, took approx 4 weeks to clear up with meds. December 2021 - Severe lower back pain for seemingly no reason. 16th January 2022 - 5th OB by far the most severe OB I've had, ulcer probably about 1.5inches long, severe swelling and also affected my toilet habits for a week or so. Bad fever high temps, followed by a couple of days of cold sweats. early February 2022 - Itchy bumpy rash on my chest, started taking Acyclovir, this has just about healed fully now, I didn't get any fluid blisters with this just spots that dried out. Currently taking 800mg Acyclovir daily until I see a consultant on Thursday for hopefully daily suppression treatment. Interestingly my back pain goes completely when I'm taking Acyclovir. The severe lower back pain lasted approx 2 weeks, after this time it was just an irritable but tolerable ongoing ache.
  12. Hi Waters, I also get a single ulcer/lesion. I've only recently been diagnosed with HSV2 mainly due to the pandemic and my GP not swabbing me and testing over 2 years ago now. My first 4 outbreaks (over the last 2 years) were all very similar, just a single ulcer not really any itching at all, just a strange sensation and slight tingling around my lower region and abdomen, previously once the ulcer opened up I'd feel much better within myself pretty much straight away and it's never actually been painful I've just had to wait 3-4 weeks for it to fully heal. However, roll on 16th Jan 2022 and I had the worst outbreak yet, same general area as before but they came up as 2 small bumps, looked almost like a spider bite, they swelled quickly and within 2 days I was having really bad fever, very hi temps followed by cold sweats, this went on for about a week. I'm still waiting for this OB to heal I'd guess I'll be waiting another 2-3 weeks based on the healing progress so far. I have noticed something that leads me to believe the covid vaccine has changed my outbreaks and how my body deals with them, I'll be writing a post on this and would welcome any input from others that may have noticed a change either since having covid or the vaccine. I'm not anti vax I had jab 1 & 2 willingly.
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