[Question #7091] Valcyclovir-resistant Herpes

8 months ago
Hello,I'm presuming I will be talking to Terri. Nice to meet you. approx. 2 years ago, I let my this guy bust onto my mouth (sorry for the details). Almost immediately the next day, my lips started tingling. I developed what looked like sores on the corners of my lips that strongly resembled the herpes sores I saw online. I saw an RN and she took a spit test (negative). After still having the sores, I requested a blood test which came back positive for HSV-1. She put me on valcyclovir 1000 mg/day. It didn't do anything. The sensation grew to my entire face and it felt like my face was on fire. The sores did not grow, but they also didn't go away. I saw this guy again after 2 months and the burning sensation started on my crotch and I started getting these small pimples on my butt that I had never had in my life. I also saw an infectious disease specialist who claimed that "that doesn't sound like the google version of herpes that everyone has" so he didn't help me out. After months of my face and genitalia being on fire, fire got subdued, and for a few months I got some rest. The sores on my lips still were there. I stopped taking valcyclovir after a while and felt okay for a bit. Around last summer, I started feeling the symptoms again. I went to another RN. She told me to see a neurologist for the pain (prescribed gabapentin, which didn't help). Saw a gyno who retested me for HSV and it showed an IGG value over 8 (can't tell you more specifically, sorry). She put me on valcyclovir and told me to see another infectious disease specialist (who didn't even recognize the kind of sores I had, so she didn't help), and a dermatologist (who tried to give me antifungal/steroids and antibacterials, neither of which are working). As it stands today, I still have these sores on my mouth and nothing I do can seem to remove them. My question is, since valcyclovir doesn't work on me, is there any good reason why I can't take foscarnet? What else can I do to fix this? 
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
8 months ago
I think you've got the order of things a bit mixed up.  You need to find out first that these sores are actually herpes before you decide to try more unorthodox treatments.  If you were my patient, I would request that you be off antiviral medicine for several days and if the sores are still present, then swab test them using PCR or NAAT tests, which are far more sensitive than culture. 
I don't know what a spit test is but it's not good testing for herpes
You clearly have HSV 1 infection but we don't know where and we don't know that the sores are due to HSV 1. 
Can you tell me more about the sores?  Are they there kind of all the time, do they come and go and if yes, how often do they come and go?  What do they look like?

Terri
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8 months ago
The sores started immediately after that sexual encounter (guy told me he gets cold sores a few days later). I have some on the left corner of my mouth that have been there for 2 years (they have never gone away). I also have some on the right corner of my mouth that disappeared a year ago, but gradually came back (they are not severe as the ones on the left corner). They look like very small, white, clustery bumps, that no amount of rubbing will remove. Also, there are more whitish-looking bumps along my upper lip, but those are below the skin, whereas these ones are above it. Valcycovir has not changed the sores at different dosages or when I wasn't taking it at all. I'm also using Pimecrolimus cream, which isn't helping them go away along with Doxycycline (100 mg  twice a day). 
I accidentally touched the one on the left with my finger a few months ago, and my hands have been overly sensitive and almost painful at some times. (is it possible that I have infected my hands?)
Also, since I do have this disease, I have to ask: 
1. What are my chances of getting encephalitis/keratitis and do antivirals reduce the likelihood of that happening? 
2. Is there an expert in these types of matters who is the equivalent of you but still practicing in the States? I'm not having a lot of luck with the doctors I'm coming across and a lot of them don't know too much about herpes apart from the traditional aspects of it. And frankly, this disease has put my personal life on hold for 2 years and it's slowly making me very miserable because as long as I have these symptoms, I don't feel comfortable getting close to anyone else. 
3. I realize foscarnet is unorthodox, but what is the harm in taking it if you don't mind my asking? 
4. Does having an autoimmune disease (evidence has shown that I may have Sjogren's) play a role in this? 
5. Is it possible that this virus has mutated in some way and it's impacting me differently? Or I'm genetically disposed to be more impacted by it? 
6. Is there anything I can do to help eradicate the herpes virus?
(sorry about all  the questions, I'm honestly not sure where else to get them answered)
I will talk to my doctor about getting the PCR and NAAT tests done. 
Please let me know if I need to clarify anything else, and thank you for your help. 

Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
8 months ago
First of all, what you are describing on your lips are called Fordyce spots.  Look it up on the internet.  Herpes lesions do not last for years.  The fact that valacyclovir has not changed the bumps supports this.  So to be clear, I have no idea if you have HSV 1 or not, but what you are describing is NOT herpes.


1. What are my chances of getting encephalitis/keratitis and do antivirals reduce the likelihood of that happening?

IF you have herpes, the chances are very low that you would get either of these conditions.

2. Is there an expert in these types of matters who is the equivalent of you but still practicing in the States? I'm not having a lot of luck with the doctors I'm coming across and a lot of them don't know too much about herpes apart from the traditional aspects of it. And frankly, this disease has put my personal life on hold for 2 years and it's slowly making me very miserable because as long as I have these symptoms, I don't feel comfortable getting close to anyone else.

I would suggest you obtain a herpes antibody test.  I'm sorry you are miserable.

3. I realize foscarnet is unorthodox, but what is the harm in taking it if you don't mind my asking?

It has significant side effects AND what you have described is not consistent with herpes.

4. Does having an autoimmune disease (evidence has shown that I may have Sjogren's) play a role in this?

A role in herpes?  The symptoms you describe are not related to herpes.

5. Is it possible that this virus has mutated in some way and it's impacting me differently? Or I'm genetically disposed to be more impacted by it?

See #4

6. Is there anything I can do to help eradicate the herpes virus?

We don't know that you have the herpes virus.

(sorry about all  the questions, I'm honestly not sure where else to get them answered)
I will talk to my doctor about getting the PCR and NAAT tests done. 
Please let me know if I need to clarify anything else, and thank you for your help.

You have believed for a long time that these spots are herpes but your symptoms simply are not consistent with herpes.

Terri


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8 months ago
Thank you for your response. 
I looked up Fordyce spots online, and it does look similar to some of the spots on my upper lip, albeit not the problem areas that are the corners of my lips. 

I did have the IGG antibody test done, and it showed a value over 8, which told me it was positive. 

My only reasoning for thinking that the sores are herpes-related is because they appeared almost immediately after that sexual encounter. I haven't seen anything online that says that Fordyce spots appearing that quickly. However, I will ask my dermatologist if addressing them with the CO2 laser will help remove them. 

To this I have to ask: why would contact with a seemingly harmless Fordyce spot cause significant sensitivity in my hands after touching it? 

My biggest, last question is: if I have the PCR/NAAT tests done on these sores, and they're positive, what would my next course of action be seeing as though the traditional medicine is ineffective? (I realize you think it may not be, but I like being prepared for any scenario.) 

Thank you for sharing your experience with me and everyone else on this forum.

Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
8 months ago
You might see a dermatologist to evaluate whether these are Fordyce spots or not. 
So we know you have HSV 1 but the question is are these symptoms related to your HSV one infection. Sometimes people get confused about that.
Herpes lesions would not appear immediately after a sexual contact. The soonest I have ever seen someone developed lesions in two days later and the average time from acquisition to symptoms is 5.5 days.
If the spot you are referring to was actually herpes, and you touched it, it would not cause sensitivity in the hand unless you became infected with herpes on the hand. This could only happen if there was a break in the skin to allow the virus to enter as the skin of the hand is too thick to penetrate. And if you had a break in the skin and the virus entered your hand, this is called herpetic Whitlow and it is very symptomatic. It would cause multiple tender deep blisters on a very red base.
If you do have a swab test done of the sores and they are positive for herpes, in the traditional medications of acyclovir, valacyclovir or famciclovir do not work, then you could consult an infectious disease physician to consider alternative therapies.

Terri
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