Anti-Viral Resistant Herpes

I contracted oral herpes a few years ago from my present wife. For most of that period the outbreaks were infrequent and mild (a single small lesion that would heal in  few days without cratering).

A few months I ago I also began having symptoms of genital herpes, though the presentation has not been of the "classic" variety, and the diagnosis has yet to be confirmed (I have only had one lesion on my genitals, and that on my scrotum.The others have been on my legs, buttocks and torso, if that's possible). I have also had recurrent irritation, itching, and prodromal symptoms (neuralgia, burning) on my penis, scrotum, and legs, accompanied by flu-like symtoms (symptoms), which has mostly resolved at this point. In spite of the diagnosis not being confirmed (the doctor took a viral culture from penis which came out negative; there were no visible lesions anywhere at the time), my dermatologist put me on suppressive acyclovir, which provided some benefit, but did not keep me completely symptom free.

I stayed on the acyclovir for about two months, until I started having frequent flank pain and headaches, which I took as indicative of nephrotoxicity from the acyclovir, particularly because I am on continuous mesalamine -- a drug that also can be nephrotoxic -- for ulcerative colitis.

Shortly after I went off the acyclovir, which was about 10 weeks ago, I started having outbreaks of oral herpes that have progressed in frequency, scope, and severity, and have been continuous for about the last 6 weeks. I attempted to go back on suppresive acylovir, but to no avail whatsoever. I then tried a one-week course of Famvir (500 mg twice daily) that also had no impact. And by no impact I mean not that the existing lesions didn't immediately disappear -- which I didn't expect-- but that I continued to get new lesions throughout the course of treatment. I also have been taking l-lysine, vitamins (including high doses of vitamin C), minerals (including zinc), and various herbal remedies. I also took a week off of work to limit my stress level, and all but quit drinking in order to bolster my immune system.

Not only has nothing has helped, but the lesions have been spreading and now cover about a 1'' x 1.5'' area between my upper lip and my nose. Each individual lesion does not last very long, but new ones appear about every other day. I have not been able to get in to see the dermatologist who prescribed the acyclovir (the Famvir I actually got from my sister), because he has no appointments available for the next several weeks.

My questions are:

1. Have you ever heard of such a recalcitrant case of herpes, either oral or genital in an otherwise healthy individual?

2. Is it possible for immunocompetent individuals (I do not have any immune-defenciency disease that I am aware of, and have had a negative HIV test within the last two years, for what it's worth) to develop anti-viral resistant herpes or, alternatively, to contract it? If so, what sort of treatment is usually prescribed? I read that Foscarnet is prescribed for immunocompromised patients with anti-viral resistant herpes,but not recommended for others.
3. If the answer to either of the above questions is "no," is it likely that I am suffering from an underlying problem that is impairing my immune system?

4. Would most internists and/or dermatolologists (e.g. those that are available to me through my HMO) know how to diagnose and/or treat anti-viral resistant herpes? Are testing facilities for it available through most commercial labs?

5. My wife had a cold sore toward the beginning of this year, and I didn't make any effort to avoid oral contact (e.g. kissing) with her during that time, because I figured I already had the virus, and could get "reinfected." Is it possible that I could have, and that this could be causing or contributing he burgeoning severity and tenacity of my current disease? I am at loss to explain why, after almost four years of having oral herpes, It has all of the sudden become so severe and tenacious.

6. I have been applying anti-microbals and various over-the-counter topical treatments to the lesions and inflamed tissue around them (it's actually hard to differentiate the two at times, as the entire area between my upper lip and nose is virtually covered in lesions) to prevent infection, ease pain, and hopefully speed healing. Is this a good idea, or is it possible that it could be contributing to the spread of infection to the surrounding tissue, or causing the infection of new nerve ganglia in the presently infected area?

Thanks for your time and patience in reading and responding to my detailed account and questions.

[auntiejessi]

Hi there -

You ask several good questions.  Forgive me, but I can never remember if its .2 or .02% that are actually resistant to antivirals.  Either way, its low.

You tried famvir for a week.  Suppressive therapy takes about 5 days to kick in, so its possible you didn't take it long enough to see any results.  Also, you continued to have sores, possibly because you weren't on a treatment dose of the antivirals.  The treatment dose for famvir is 1000 mg twice a day for one day for genital herpes, and for cold sores, take a single dose of three 500-mg tablets at the first sign or symptom of an outbreak (within 1 hour).  After that, you could go right into the suppression dose, which is 250 mg twice a day.

That said, I wonder if this is all herpes.  You wouldn't get herpes on your torso.  Its been 3 months - that's about enough time to get a type specific IgG blood test and at least find out if you have either type of herpes.  That won't tell you if all of these are herpes related, but if you have no antibodies, then you know this can't be herpes, and therefore, aren't responding to antivirals.

I personally wouldn't use anything on them at this point that your doctor didn't tell you to use.  A lot of those treatments can cause irritation, and you might be preventing it from healing.  

The other thing that makes me wonder about this is that if you got herpes from your wife, and she has a strain that isn't resistant to antivirals, the strain you have would not be resistant.  

Since you can't get into a derm for several weeks, your regular doctor should culture any new sores you get for herpes, bacteria, etc.  It would really be a lousy deal for you if this was a bacterial infection that was only treated as herpes because everyone just assumed, ya know?

I hope this helps.

Aj

[blue72]

Thanks for your reply and advice.

Just a few points:

A) I don't know if my wife's oral herpes is anti-viral resistant or not, because she has only used episodic acyclovir therapy a few times, and her outbreaks are infrequent and have always resolved on their own anyway, as they do for most  people.

B) Assuming I have genital herpes, I may have gotten it from someone other than my wife.

C) I know that herpes on the torso isn't common, but I believe it to be herpes in my case because it appeared shortly after my other (genital) symptoms, and it "fits the pattern"-- i.e. lesions (they are very small, but when looked at closely appear to be lesions) that form in a "line" and recur in the same place. Viewed from a distance (e.g. in the mirror) they look like a "scrape" from something sharp, like a twig. They also tend to itch.

D) It also seems more than coincidental that this drastic worsening of my oral herpes outbreaks came just a few weeks after I began having genital herpes symptoms. I wonder if I could have been infected orally with type II (in addition to the type I that I already had), or with a new "strain" of type I that is behaving like a new and seperate infection. Perhaps this is some sort of "super strain" that has yet to be discovered. I have never read anything about whether anti-viral resistant herpes is actually more or less virulent, per se, than regular herpes. Since the former usually arises in immunocompromised patients, it"acts" more virulent, but that doesn't necessarily make it more "fit" from a genetic standpoint. Sometimes resistant mutants of viruses and bacteria are actually less fit.

E) The dosing regimen of Famvir I followed was the one recommended on the Famvir website for people with AIDS. I don't think I have AIDS, but chose that regimen because it was the highest dosage recommended for herpes for more than "one-day" use. The only greater dosage for multi-day use -- 500 mg 3x daily for one week -- was recommeded only for shingles. Anyway, it begs the question why oral herpes, which is typically prescribed only episodic anti-viral therapy ("one-day therapy" in the case of Famvir), if anything at all, in a 35 year old immunocompetent individual would not respond to a Famvir dosing regimen prescribed for people with AIDS. But maybe you are right, though; perhaps it just wasn't enough for long enough. Maybe my docotor needs to hook me up to an IV and juice me up with acyclovir to see if that works before concluding that the first-line anti-virals just aren't going to work. Frankly, I'm willing to try anything at this point, as long as it's safe. You could also be right that there could be a bacterial infection either causing or compounding my condition. I have chronic sinusitis, so I'm constantly blowing my nose. The mucuous often gets all over the lesions, which are right below. I try to wash and disinfect the area regularly, but I can't do it every time I blow my nose. But maybe a secondary bacterial infection is causing local immunosuppression and preventing my immune system from clearing the herpes. I don't know if this could also explain why the herpes is spreading, but it might.

Thanks again.

[auntiejessi]

I'm going to move this over to the herpes forum, and Grace, the community leader over there, will be able to respond to this tomorrow.  She knows more about testing for resistance, etc.

Aj

[blue72]

Thanks for moving my thread. Sorry, I am a newbie here, and still learning how the site is layed out, what forums are available, and what to post where.

Regarding my condition, I wanted to add that my outbreaks originally started out being on the right side of my upper lip only, but have since spread across the meridian of my face, and are on both sides. I read that bi-lateral herpes is uncommon, as is the infection spreading (auto-innoculation) in a given individual after he has had the disease for a long time (4 years, in my case), but this is precisely what seems to be happening. If this continues, it seems that herpes will eventually take over my entire face.

[auntiejessi]

Its ok - herpes can really go in any forum, but once it starts getting really technical, I give it to Grace.  :)

I am sending her a message, and will make sure she sees this thread.  She'll be back online tomorrow sometime.

Aj

[gracefromHHP]

I encourage you to seek out the attention of a dermatologist this week for further work up.  Could you have developed a tk deficient predominate hsv infection?  Well yes you could - all of us routinely have ob's that contain some tk deficient herpes in it but it's very unusual for someone who is otherwise immunocompetent to have it be an issue ( yes I understand the medication you are on but it's still not really an issue ).

I would be INCREDIBLY  surprised if you had actually had any nephrotoxicity due to acyclovir. first off that hardly ever happens even with IV acyclovir which has close to 100% bioabsorption, the odds of it happening with po acyclovir which only has a 15% bioabsorption is almost unheard of unless you are someone with underlying kidney issues ( once again the medication you are on is not an issue with this ).  I think the symptoms you took to be due to the medication were due to something else entirely.

I'd actually stop taking the famvir in the higher doses - no reason for it and it's pretty obvious that it's more than just herpes going on.  go back down to the 250mg 2x/day dose for suppressive therapy if you are interested in remaining on it for the purpose of your oral herpes.  If you want to get to the bottom of the whole do you or do you not have genital herpes too part I'd stop it completely and just take the 1 day famvir cold sore dose the next time you feel the start of a new cold sore.  

I'd also stop applying the topical antibiotic cream just in case any of this is a reaction to that.  

Have you been back to your dermatologist since when they initially suspected genital herpes?  Did they do a blood test at that time or just the lesion culture which came back negative?  I encourage you to stop self treating and stop assuming that you have some sort of super herpes strains - this sounds far more like something else going on. Your description of your symptoms on your torso actually sounds like scabies more than herpes.  There is absolutely no reason to suspect that you have some sort of herpes gone wild thing going on on your body.

grace

[blue72]

Thanks for the reply.

I didn't have a blood test when I originally went to the dermatologist, suspecting genital herpes, because it was too soon after what I believed to be the point of contact. That point was an encounter at an Asian massage parlor while I was away on a month-long solo vacation. The encounter included very brief protected intercourse both proceeded and followed by the "masseuse" giving me manual stimulation at length. There was no contact with areas that weren't covered by the condom during intercourse (I was watching to be sure), but she did rub lotion on her genitals prior to stimulating me manually. I have read opinions by both of the Docs in the STD Experts Forum that it is near impossible to transmit herpes this way, but unless I "autoinnoculated" the virus from my mouth to my genitals --  a mode of transmission that the Docs have also said is impossible for anyone who has had the virus for any length of time -- or my wife gave it to me (very unlikely after 4 years together, unless she cheated on me, which I have no reason to suspect),  then that is about the only way I could have gotten it. The time frame from contact to first symptoms was consitent with the incubation period for herpes too: About one week.

Anyway, there were no lesions to swab at the time (I had previously had a "pimple-like" lesion on my buttocks that would have been a canidate for swabing, but it was mostly healed at that point), so the Doc just swabbed the irritated area on my penis. I came back three months later to have the herpes anti-body test, along with some other blood work, but for some reason the lab failed to perform it.

After I returned home to Texas (I had been in California where the HMO of which I am still a member is located) I tried to tell my wife about my symptoms. I told her I was worried I could have herpes and that we should use condoms until enough time had passed for me to get a blood test.  She suspected that I had been unfaithful while on my trip, but I just couldn't come out and tell her at first. We made an effort to use condoms but, because they've never really worked for me without chemical assistance ( I have trouble keeping an erection and reaching climax with a condom on) and she hates them anyway, we stopped using them. I did so only with great trepidation, but it's amazing how easily one's fears and scruples are forgotten in the heat of passion (and how they come back to haunt you when the passion has subsided). I took some false comfort from the fact that she didn't believe that I "had gotten anything," even after I confessed to everything. This way I at least felt like not using condoms was a decision that we were making together, if possibly a very bad one. I hoped that, if it was herpes causing my symptoms, she would be at least partially protected (i.e spared the worst symptoms of the disease) by already having had it orally for years. It's a terrible calculus, but I reasoned that if I did have it, and we were going to stay together -- which it seemed we would, as she had forgiven me my shameful transgression -- that there was no way we were going to use condoms for the rest of our lives, and that it would be better for her to get it now than later, when we she wants to get pregnant. I nervously waited, and watched, and hoped that she wouldn't have any serious or discernable symptoms. Weeks and months passed. Sometimes she would complain of a dull, fleeting pain and feeling of fullness in her lower abdomen, and itching in the genital area, but that was nothing she hadn't had before, at times (the former was usually associated with menstration, but occasionally in the middle of her cycle, as well). At the moments that I was convinced I did have herpes -- something I felt often, but always kept to myself -- I dementedly hoped her symptoms were due to herpes, and that that was as bad as they would ever get.

My symptoms, which persisted in spite of being on suppressive acyclovir, included pimple-like lesions and neuralgia on my legs and buttocks, as well as recurrent flu-like symptoms The skin on my genitals remained red, but the acyclovir had at least caused the persistent tactile soreness in the area to subside. Eventually the lesions and neuralgia on my legs and buttocks also  subsided, along with the flu-like symtoms (symptoms). Now the only symptoms I have below the waist are a sometimes inflamed and itchy scrotum, and red (but painless) area on my penis. Recently I had a lesion on my scrotum that was moderately painful and looked very suspicious. Taken collectively with my all my other symptoms to date, it pretty much confirms my suspicion that I have genital herpes. I will get in to see the doctor for herpes antibody test to confirm that suspicion.

I haven't told my wife this or about the lesion, and wasn't sure I should. I figured that if I had it, then she surely had it by now, too, since we have unprotected about 2-3 times a week. See, I had read that the chance of aquiring the virus from having unprotected sex with someone having an outbreak was 70 percent, and since I've been having symptoms of one kind of another almost continously since they began, I didn't see anyway that I could have it and she not have it.

I have since read on this site that the rate of herpes infection for "discordant" couples who have unprotected sex 2-3 times a week is about 2-3 percent a year. For me this is good and bad news. Good because it means my wife may still not have it and it's still possible to prevent her from getting it. Bad because she could still get it, and it could still be terrible (rather than the mild symptoms she has had that I hoped were the only symptoms of herpes she would ever have).  It's also bad because I am once again faced with both the responsibility of preventing her from aquiring herpes (assuming I have it), and the moral dillema of how to do so.

As for the rash on my torso, it could very well be something unrelated. I will get back to my primary care doctor next week; my dermatologist remains booked for the next several weeks. I am hoping that the Doctor can swab the lesions on my upper lip (assuming I still have them when I see him) and have them cultured and tested for acyclovir resistance. The reason I haven't seen the doctor sooner about this or to follow up on the possible genital herpes is that I live in Texas, but my HMO is still in CA. I wasn't able to get health insurance here because I have ulcerative colitis and asthma.

[gracefromHHP]

Have you contacted your insurance to make arrangements for care in your new state? If not do so. There are ways to deal with this though they may entail seeing only the providers they say you can see and not just seeing whoever you want.

You can order up your own type specific herpes igg blood test thru either www.tstd.org or www.healthcheckusa.com.  You can even save some money and just get the hsv2 igg thru either of them ( call/email them to arrange for it ).  It should run you under $80 to find out your hsv2 status if you don't want to wait to get it all done thru your insurance. You  might be able to find a clinic that offers the biokit hsv2 igg blood test too .  

Even though your story is obviously more than what you originally presented it to be - this still isn't likely to be all herpes going on.  It really sounds like there's still guilt going on about the sex worker visit that is leading you to assume that this all has to be std related and something "bad" don't you think?  As I said - I'd stop the suppressive therapy completely at this point.  I think you need concrete answers about all this so that you can deal with this all and put it all behind you.  Should you get a return of genital symptoms - see a provider within 24-48 hours for a lesion culture and typing - preferably pcr if you can get it.  I also encourage your wife to follow up on her end - she should be talking to her own gyn and arranging for testing on her own.  

grace

[blue72]

Thanks for the response. I realize this has been a long time coming, but I found out that the chronic lesions on my lip were staph, not herpes. I suspect the same of the transient lesions that have appeared on various parts on my body -- including my genitals -- because I tested sero-negative for type II herpes, but positive for type I. It was originally a relief to find out that the lesions were being caused by non-MRSA staph, rather than herpes, and could be treated with antibiotics. But after two 10-day courses of two different antibiotics over the course of several weeks, I have yet to completely kick the infection. If it didn't start off as MRSA, it seems to be headed in that direction.

I had believed that the lesions were herpes because they had the same appearance and were in the same location as every other lesion that I had gotten over the course of the four years since I met my wife, which is when I assumed that I had contracted oral herpes. Now it seems plausable that, though I carry the type I herpes virus, I may have never had a herpetic lesion, and all the lesions I have experienced were caused by staph. On the other hand, it is hard to explain the intermittent inflamation (inflammation), redness and itching -- originally preceeded by tingling and other herpes "prodromal" symptoms -- that I have had on my scrotum since the encounter at the massage parlor, in terms of staph. Than again, I had a lesion in that location that looked the same as others I had on my leg and hand which I presume were staph.

Anyway, it may take a long time and a lot of tests/cultures to unravel what is/isn't herpes and what is/isn't staph, but my immediate crisis is this staph infection that is plaguing me on my upper lip. I came to medhelp.com forums expecting to find an informative resource that could help me in dealing with this problem which my doctors seem helpless to eradicate, and found nothing. If you know of any such resource (in particular, a forum or expert forum) that deals with staph infection, I would really like to know that info.

Thanks again for your time and consideration.

[gracefromHHP]

Thank you for adding to your original thread - made it so much easier to understand what your reply was in reference to :)

I'm glad you sought out additional help as I suggested and got at least the answer of it's not all herpes which is why high dose herpes medications weren't making a bit of difference!  Hopefully here at some point the antibiotics kick in and start taking care of it for you and you are back to your normal self soon :)

I'm pretty sure there is a dermatology expert forum here.  Did they switch you over to bactrim to cover mrsa just to err on the side of caution?

grace