immunocompromised with HSV

[lemonface]

Hello Nurse Warren,

First off I want to thank you for this message board. I have been dealing with HSV for over a year now and have found so much information from you and others here which has been invaluable to me.

A brief background. I acquired HSV about 1.5 years ago. I had what appeared to be a classic yet (to me) mild primary outbreak – three blisters on right side inner labia and one blister left side outer labia, flu like symptoms etc… Little pain and itching that I remember. Since then I have had outbreaks pretty much every month, mostly right before or right after my period. Often I have two outbreaks in a month. These always consist of one very large (pea sized) blister. No tingling sensation, but painful when touched and slightly itchy. In a couple of days they break open but little liquid comes out, just a bit of blood, and no crusting over. Just a small hole remains and heals within a week or two. The part that bothers me and the reason I am writing is that I have been on valtrex 1gram for about a year. At first it seemed to help and my outbreaks cut back to one every two months but few months ago I was getting what seemed to be back to back outbreaks so upped my does to 2grams and it still does not seem to be suppressing well.
I have an autoimmune disorder and was taking immunosuppressant medication but have stopped that about a year ago as well to see if it helped my body fight this.

I have also had two igg tests and one swab don’t over the last year. The swab came up negative but the igg came up as HSV1. Since these episodes seem so frequent I had only been tested for HSV2 for the first IGG and the swab which both came back negative. The last IGG I had done in Nov. This year tested for both 1 and 2 and came back positive for 1 with a value >5.
Another odd factor to me is that I almost never have an outbreak in the same place twice and they switch from the left to the right side at times which from my reading seems very uncommon. So my questions at this time are:
1) Would having an autoimmunine disorder effect the size, frequency, duration, location etc… Of an HSV episode?
I have not found much info on this so if you have any reading recommendations please let me know.
2) is it possible for outbreaks to change locations -especially from one side of the body to the other so frequently?
Though every bump/blister looks the same and follows the same course I am wondering if some of these could still be something else?
3)is it possible that this is HSV2 even though all previous tests were negative for it? How likely would that be?
4) is it possible that Valtrex just doesn’t work for me and that is why I’ve not seen much difference since taking it and upping my dosage. Is there any other medication you could recommend? Supplements? Diet?
5)Could birth control lessen symptoms if they seem to follow my hormonal patterns? I have been thinking about going on BC and eliminating my periods for a while but am afraid as I have read some horror stories about BC and HSV online.

I can handle some outbreaks but I would like to try to have some symptom free months to recoup. I am slowly coming to terms with this. In a lot of ways it has been easier to deal with than my autoimmune disorder. But I do wish to try to clear some of this up so that I can get this more under control.
Thank you so much for your time and I look forward to hearing from you soon.

[Terri Warren]

You mentioned your first recognized outbreak – was that swab tested positive? Have you ever had a positive swab from a lesion or only positive serology for HSV 1? Have you ever in your life had a cold sore on your lip or in your nose or on your face?

Terri

[lemonface]

Sadly my initial episode was not swabbed and the only swab I have had approximately 8 months after the initial episode was negative for HSV2. They did not test for HSV1 to my knowledge. The blister that they swabbed was less than 24 hours old but I was on valtrex suppression by then so not sure if that would affect the results.
I’ve never had anything on my lips, nose or chin that looked like HSV. I’ve asked my mother if I ever got coldsores as a child and she also said no.

[Terri Warren]

So we know that you have HSV 1 and you don’t have HSV 2. So IF these lesions are herpetic, then they have to be HSV 1, right? But HSV 1 does not behave this way in the genital area – outbreaks every couple of weeks. I think they key is to have these swab tested over and over. If they all come out negative then I would suggest that they are not herpetic in nature. It is also important that these have no responded to herpes medication. In order to get the most accurate diagnosis, I would suggest coming off suppression and not even starting to swab until at least a week has gone by. The medicine will stay in your system for about a week. It would be best if your swabs could be PCR, not culture – 3-4 X more sensitive than culture. I’m not convinced by a long shot that all of these are herpes.

TErri

[lemonface]

Hello Nurse Warren,
Thank you so much for your response. I will be saving for the PCR swabs.
I don’t necessarily think all these blisters are HSV either but since they all present similarly and seem to follow the same course I’ve been treating them all as HSV for my partner’s protection and really my piece of mind.
This may be a silly questions but in your experience have PCR swabs been covered by some insurances? I’ll give my insurance a call too but wanted to see if this could be a possibility.
Also, I know IGG tests are pretty good but would you recommend that I get a Western Blot to see if I have HSV2 that the IGG could have missed?
Is it possible for someone to seroconvert one type but not the other?
Lastly, would having a compromised immune system make a difference in the frequency and duration of HSV episodes?
I get one blister once a month (sometimes twice if I am sick or miss a does of antivirals) which even if this were HSV2 seems rather frequent for someone taking antivirals.
I am curious if having an autoimmune disorder would make a drastic difference for someone with HSV.
Thank you again for your help.

[Terri Warren]

Insurance may well pay for PCR swabs, yes.
Yes, a western blot might help clarify this situation for you.
The testing is better at picking up HSV 2 than HSV 1, so I guess the answer is yes, it can pick up one type and not the other, at times.
Yes, being immunocompromised might make outbreaks more frequent but you need the outbreak confirmed or not. Important! I would suggest that you consider coming off antiviral therapy and having the blisters swab tested, if they continue.

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Terri

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