Atypical outbreaks and getting worse. Antivirals not working.

[Kob456]

Hi All,

im only 3 months into this and am on my 3rd outbreak. Each seems to last 4 weeks with something new each week. I get small sores or cuts on my vagina and anus for a few days and then I get the classic looking outbreak in random places on my body. My primary outbreak I didn’t have this, but my 2nd outbreak it was on my knuckle and this time on my wrist. But worse this time. Next week I’m expecting what happened last time which was random 1 inch cuts on my skin between my vagina and anus that last 3 to 4 days. 
 

Everything I read online says this kind of thing only happens to immunocompromised persons or those with an underlying skin disease. I also get chronic yeast infections (but haven’t had one since getting this) and other than this Im healthy. 44 years old. On Synthroid for hypothyroidism I got a few years ago. But it’s well managed. 
 

The post by J1010 about unusual outbreaks was really helpful for me as it gives me hope this might become less frequent after a year. However at this point I’m paranoid about spreading this to my 5 year old as it’s always a surprise to wake up in the morning with outbreaks on my hands or arm. Im so worried about trying to have sex again with my partner (who I got this from and who has no symptoms) as last time it triggered my 2nd outbreak. Just as I start to cope with things and come to terms with this terrible virus things get worse. It’s so hard not knowing how this will progress. I don’t understand why Valtrex isn’t working. The only reasons I can find online are that it may not work if you’re immunocompromised. 
 

Feeling so fragile and that I can’t even sneeze or it will trigger an outbreak. How do those of you cope who have had constant outbreaks? It just seems awful. 
 

Thanks. 

[mr_hopp]

Hey there,

I'm really sorry to hear that you're going through such a tough time with these outbreaks. It sounds like they've been lasting longer and showing up in different places each time, which must be really frustrating and concerning. 

About the hypothyroidism ... (First of all, I want to acknowledge that you're surely way more knowledgeable about this than I am!) Hypothyroidism can cause a disruption of the immune system, which could potentially lead to more outbreaks. There's a study that investigated the association between thyroid hormones in hypothyroid patients and the presence of the Herpes simplex virus (HSV). They found that hypothyroid patients had higher levels of both HSV and a protein called IL-23, which suggests possible immune system disturbances. And I hear you that the Synthroid has gotten your hypothyroidism under control, which in tandem should be bringing your immune system under control and helping to stave off herpes outbreaks, so who knows. There may even be a drug interaction between Synthroid and Valtrex, although drugs.com says there isn't one.) As you know, there's just so much to consider in the interplay between all this stuff. 

Now, let's talk about everything else you shared ... Dealing with herpes can be a rollercoaster of emotions, yes! And it's completely normal to feel fragile and overwhelmed at times, especially everything you've gone through in the past few months. We all have had our own flavor of those emotions, for sure! Just know that you're not alone in this journey of healing.

I totally get why you might be worried about spreading it to your 5-year-old or experiencing triggers that lead to outbreaks, especially if it's on the parts of your body he might touch. It's natural to be cautious, especially when you're still figuring out how this virus affects you. And talking openly with your partner about your concerns can be a good step in finding ways to navigate intimacy together. You know, just to be sure, you might want to get some of these blisters swabbed and PCR tested to make absolutely sure they are herpes outbreaks? 

As for Valtrex not seeming to work as expected, keep communicating with your doc about your experiences. They can help you understand what might be going on and explore other options if necessary. Everyone's body is different, so what works for one person may not work the same way for another. Perhaps talk to your doc about switching to an alternative such as acyclovir, famciclovir, pritelivir and see how that goes?

Coping with constant outbreaks can be overwhelming. And yes, for most people, outbreaks do become less frequent over time. (It also took me about a year before I was only having just a few outbreaks per year, although I wasn't having as many outbreaks as you're experiencing.)

In the meantime, know that you have a community here that cares about your well-being and is ready to listen and support you. Take things one step at a time, be patient with yourself, and don't hesitate to ask for help when you need it. You're stronger than you may realize. Sending you virtual hugs and support!

[Kob456]

Thank you SO MUCH for such a supportive and informative response. I didn’t know about that study re: hypothyroid and hsv. That is interesting. 
 

I have had two PCR swabs done. One on a primary vaginal ulcer and then a second one on a vaginal “cut”. I have also had two serum tests. PCR tests were both negative. Serum test showed positive for hsv1. I’ve had single ulcers on my gums that come and go for over 20 years so that is what that positive was for. My partner was serum positive for hsv2 but not hsv1.  I developed symptoms 4 days after intercourse with him. I get prodrome symptoms too. So the timeline matches up. And the lesions on my wrist are classic of hsv. I’ll upload a pic of my wrist from a few days ago and then today. Lesions are extremely ichy but not painful. I really think there’s no question I have now both hsv1 and hsv2. But I would have loved if this was not the case.  I’ll get another serum test after 4 months time to confirm.  
 

my doctor has referred me to a dermatologist for a second opinion.

 

Thank you again. This is such a great forum.

 

 

[mr_hopp]

My pleasure! I'm glad it was helpful. And yes, those do look like classic herpes outbreaks on your wrist. I'm glad you're going to a dermatologist to get more datapoints to work with.

That's odd that the PCR tests came back negative. When done correctly (getting the fluid from an active blister or fissure, which is quite painful), then PCR test results tend to be very reliable. Perhaps there just wasn't enough on the swab to be detectable? Or perhaps you got swabbed when the outbreak was in its healing phase and there wasn't enough to get on the swab?

And as far as your serum test (which I assume was an IgG test?), since it was 3 months ago that you were exposed, then that is still in the "gray area" where herpes antibodies might not be detectable in the blood. They give a wide window saying you need to wait 3-4 months before getting a more accurate blood test. So that part tracks — you may actually be HSV-2 positive as well, but the antibodies need more time to grow to detectable levels. To be certain you get the right data, I'd wait another month at least and then get a Western Blot, which is the gold standard in herpes blood tests and way more reliable than IgG tests.

I hope the dermatologist visit brings more clarity, and in the meantime, know that we're here for you. Don't hesitate to reach out if you need support, have questions, or just want to share your experiences.

[Jayne00]

Hi @Kob456

 

Just wondering if you have an update on your health? 

As I am having continuous flare ups too , though mine are 20yrs post first diagnosis... 

 

Just wondering if you discovered any other health conditions (any underlying immune suppressive diseases), or the outbreaks have settled down?