Continuous reflares after many years.... concern?

[Jayne00]

Hi.

I have had herpes for about 20 years, I'm not sure what variant.  

 

I had the typical original flare up, and then smaller, frequent very sensitive and easily damaged genital skin for probably a few years. 

 

Then nothing for years, 

 

Then moved country, for a few more small flare ups, then not really anything for years.  

I am not under stress at the moment and my relationship is very stable (been with the same person for 18 years now), 

When I was learning about herpes all those years ago, I immediately changed my diet.  I'm coeliac so didn't eat gluten anyway, but even though I was still at uni, I cut out all alcohol (i was fun at parties🙄),

and even though I loved it, I don't drink coffee anymore, and even though it was my favourite food,  I don't eat peanut butter anymore either. 

Or many nuts in general. 

I have kept that regime since then, and I'm fit, I'm in pretty good shape and I have a very good diet (like, my main food is kale haha).

 

But for the last 6 months, I've been having almost constant outbreaks. They will clear up, and I think I'll be OK, but then a few days to a week later, its tingling again, aching lymph nodes/groin, nerves down thighs and buttocks feeling raw and aching, blisters, pain, the whole shebang. 

At the start of these flare ups 6 months ago, I thought I felt fine, however for the last 4 months I've been feeling pretty run down and have had a few head colds/upper respiratory illnesses that are persisting. 

So for the last few months, Ive restarted some supplements and tried to focused on my health.

I've been taking fish oil, 

I've been taking zinc and vitamin C, 

Also co-enzyne Q10.

I requested bloods (as I get them every few years due to coeliac to make sure I'm not deficient in anything)

I'm not iron deficient, my b12, folate, liver, renal, T4, TSH are all normal. My CBC is all fine, no anemia and no indication of lymphopenia or neutropenia...

 

And I don't think I'm quite at the age for menopause  (I'm 39). 

So by all intents and purposes I'm healthy...

But I feel shit, and these constant continuous outbreaks are getting me worried. 

I really don't want to commit to anti-virals every day for the rest of my life, and my concern is for the risk of resistance. 

 

But this is ruining my life.  

 

My husband and I have only had sex twice in six months... And I'm so scared of passing it onto him (though given how long we've been together, he may already have been exposed...) that ANY touching down there is off the cards. 

 

So My question is - has anyone had this severity and persistency of flare ups so long after original diagnosis, that then turned out to be due to an underlying illness? 

Like , I'm thinking cancer and things... 😶 

 

TLDR - anyone had continuous severe outbreaks, that led to a diagnosis of underlying cancer or an immune suppressive illness??? 

 

Sorry for long post. 

[mr_hopp]

Hey there @Jayne00,

Gosh, that sounds like such a tough spot you're in. Two decades is a long time to deal with something like herpes, and it's a bit of a head-scratcher when it flares up after laying low for so long, especially when you're taking such good care of yourself. You're doing all the right things with your diet and supplements, and it's clear you're on top of your health checks.

Now, about these persistent flare-ups, they can be frustrating and, honestly, quite baffling. I'm not a doctor, but I've heard that sometimes the virus can get a bit more active without any clear reason why. It doesn't necessarily point to something as serious as cancer, but it's always good to keep an open dialogue with your healthcare provider about any concerns.

And the thing about antivirals, they're a tool in the toolbox, right? They can certainly be a game-changer for getting those outbreaks under control since they can bring viral shedding down a whopping 50-80%. I get your worry about resistance, but that's pretty rare with herpes meds. It might be worth discussing with your doc as a temporary measure, just to get some relief and get back to feeling like yourself.

Hang in there. These patches can be rough, but you're not alone. And remember, your husband's by your side through thick and thin, herpes or not. It's a journey you're on together. Sending strength your way!

[ashleytiffania]

Hey @Jayne00,

I'm so so relieved that I found your post. I am going through exactly word for word the same issue as you. I was diagnosed with genital HSV 1 almost 5 years ago and since then have had no flare-ups until 6 months ago when I caught Covid. It has been persistent since then with maybe one or two days being ok but then it gets so itchy down there that I can't help myself and I make it worse again by scratching at my genitals. I have been continuing to have sex with my bf weekly since he has it too and actually gave it to me unfortunately, but it does get painful and I am unfortunately hesitant to admit that I can't have sex. It's really taken a toll on my mental health. I freaked out last night because I woke up with itching and the morning after found a big glob of yellow pus in my underwear. I wonder if it got infected down there from the scratching or the herpes. I've been pretty afraid and hesitant to see an doctor and am now really thinking about it because I'm fed up and can't keep on like this. I'm starting to wonder if this is my new reality forever and honestly it makes me very sad and depressed, which is why I have turned to this forum once again to find support.

Have you seen an OBGYN about your same issue? Did they have any helpful advice or any info? Have you done anything that has helped in the slightest? I am now going to cut out chocolate and arginine rich foods to see if that helps. As hard as I try not to scratch, it's almost impossible. Vaseline helps somewhat for this and taking daily showers down there with soap. I have scratched pretty hard down there and now the area is quite inflamed. I am going to try to do a better job of ignoring the prodrome symptoms and not scratching. 

[Jayne00]

Hi Ashley, 

It sucks big time doesn't it.  

So things I've found, done and yet to do - 

 

I use a small amount of sudocrem down there and I find it soothes fairly well. Does get bloody everywhere though.  The zinc oxide in it helps heal. 

 

Don't go crazy with the topical zinc, despite some fairly weak studies that indicate regular use can reduce outbreaks. I've gone through using topical zinc sulfate rinses, zinc sulfate creams, and zinc oxide creams, and the zinc sulfate (because it causes a rapid absorption and therefore fast peak tissue concentrations of zinc) often can be very burning to the herpes blisters, causes almost deep ulcers and the eschars, and actually can make the outbreak worse.  

 

Also, as it absorbs so well, if you do this all the time and also take zinc supplements, you need to be aware of the risk of zinc toxicity. 

 

The zinc oxide is absorbed more slowly, and seems to be kinder to your skin.  Hence why I will still use sudocrem. 

 

Don't use super hot shower water to bathe your private parts. It irritates your skin. 

 

Don't use harsh soaps, just very gentle baby soaps to get the sudocrem off each day. And only on the very front and outside, I don't wash with soap anywhere near the opening of your vulva.  

 

I don't eat chocolate or peanut butter now, and I don't drink coffee.  I have tried to cut down on how many nuts I eat too. 

 

I take zinc, vit C, fish oil, coenzyme Q10 and magnesium.  

 

I would go get your basic bloods checked, like I did above.  just to be sure there isn't anything blatantly obvious that is affecting your immune system or general health. 

 

When the  prodromal tingling signs get too much,  I take an antihistamine, 1000mg of paracetamol, CBD oil, and 400mg of ibuprofen. It seems to help a little. 

And to be fair, If its aching and inflamed all during a flare up, I continue the antihistamines and analgesics. 

 

I haven't been to the OBGYN about it yet.  

Its very hard to get any doctors appointments in the UK at the moment, so I'd have to pay for private and I don't have the money for that at the moment.  

 

I haven't developed any other signs though, so as far as concern re really serious underlying disease, I'm a little less concerned.  

 

At the moment it's been a week since my last flare up which luckily was just some inflammation, with horrendous tingling and aching groin, but no blisters.  

 

Fingers crossed this settled period lasts.  

 

Also, I've read on this forum, an old thread that had a lot of girls saying that they have experienced horrendous, continuous flare ups years down the line too... so it's almost like for us girls, we can go years being OK, then for some reason a few of us can get months (unfortunately maybe years?? One girl said she had two years of it) of continuous un-ending outbreaks... 

 

So who knows.  

 

I haven't found any research papers on this phenomenon. But it does seem anecdotally that it happens to a certain percentage of us. 

 

I don't think there were any answers as to what to do about it. 

 

 

One thing I'm clinging to is the fact that there are currently trials into a vaccine for HSV-2. Two companies are at the human trial stages. So maybe, they might be talking about its availability over the next few years?? 

As soon as they state they need volunteers, I am so up for it.  

I have no qualms being a guinea pig if it gives me the slightest chance of getting rid of this curse. 

 

I'm sorry I couldn't be of more help.  Just that you are not alone.  This thing sucks balls big time. 

 

 

[ashleytiffania]

@Jayne00 Thank you for your message, it is certainly some relief knowing there's more of us looking for a solution.

I will definitely look into the zinc oxide cream. Currently I use Vaseline, but that's just a barrier cream and doesn't really treat the issue. Good point about using cooler water, that's something I will do from now on. I haven't had chocolate or nuts in a week, and am even afraid to drink alcohol at this point. 

It has been a little over a week since my last flare up as well. During the last week I have been ill with a bad cold and have been sleeping much more and taking care of myself. I wonder if that could be helping as well. I also have refrained from sex this week and am scared to do it again now that I am recovering from my cold. Another lady on this forum said that having sex has been worsening her sores. I wonder if that's been behind the recurring outbreaks and I am considering using lubricants to help with this and keep the virus inactive for as long as possible by preventing friction.

Do you recall if any of those girls who had continuous un-ending outbreaks did something in particular to make them stop? Perhaps there's a common denominator in all this we can beat. 

 

 

[ash128083]

Hi! It’s been a while since I’ve posted in this form but I’m currently in the same boat. I was diagnosed around in March 2009. I don’t remember having a bad initial outbreak. I just happen to be at the doctors for an annual exam and I had what I thought was our bump that my doctor ended up swabbing and then called me and said it was positive for HSV, didn’t tell me what type and told me you didn’t matter since the disease manifests itself the same way. In the beginning, I had typical outbreaks, a sore that would emerge, and then eventually heal and this happened every couple months so I eventually asked to go on suppression therapy and was given a very low dose of acyclovir at the time, 400mg a day. For the next nine years, the only time I would have an outbreak when I was on birth control pills, this would happen every 3 to 4 months and it was more of a yeast infection type thing. I would never get any sores, just a very inflamed, swollen, irritated vagina. Birth control pill I didn’t have any outbreaks or issues for nine years. Fast forward to 2018, eight months after I married my husband, I had the absolute worst outbreak of my life for no rhyme or reason. Again, no sores, just severe swelling, irritation, burning, and itchiness. This would happen once a month while on suppressive therapy. I found this forum, which was a godsend for me. Finally people like me! My husband was never Diagnosed and has never had any visible outbreaks, so I’m not sure if he has it or he just has a really good immune system. I started taking an array of supplements that people swore would fight. The virus completely changed my diet and nothing changed. This is impacted my daily life tremendously, and I have been suicidal on and off for years. My doctors have not been much help because they have no explanation for it. They just changed my medication to 1g of valcyclovir a day. I did eventually make the correlation that this would happen during the week right after my period started to calm down a little bit around the time of Covid and I became pregnant with my last child. During the whole pregnancy and up to her first birthday, I experienced no symptoms whatsoever. And then slowly, but surely I would get the yeast infection like symptoms every 3 to 4 months. During that time I will take an additional antiviral and get over the counter monistat for 7 days and I will be fine in a week. Lately this has been happening more frequent and I’ve been trying to write down every time it happens for my next doctor appointment. I want to see an infectious disease doctor, but I’m not sure they’re going to be much help either. I am going to be 39 this week and I feel like I am in perimenopause and have low estrogen or something which is causing this. I also get good sleep, I work out six days a week, I’ve tried to completely change my diet again, but it makes zero difference so this must be a hormonal thing. When I get these yeast infection type outbreaks, it completely sends me into a spiral. I can’t get off the couch. The pain and discomfort is so severe. It’s hard for me to take care of my children, the physical and mental state of all too much. I’ve had my doctors test me for underlying auto immune things and always my blood work comes back normal. The only other health element I have is asthma and I wonder if years of being on prednisone has completely ruined my immune system. I haven’t been on that in almost 2 years, but I do get a lot of respiratory infections, where I need to take an antibiotic and I’m on daily inhalers.  I’m praying that one day. I wake up to the news telling me they’ve approved a vaccine or a cure or a better medication to handle this disease.