lupidon / off label drugs for herpes?

[ntdc]

I have herpes (oral and genital) that i got at the same time through a kiss and unprotected oral sex. My problem is i am not responding to medication very well. I have taken 250mg famvir 2x daily with no benefit. 500mg 2x daily keeps genital symptoms mostly controlled but I still have breakouts on my face EVERY WEEK, the symptoms are a bit less severe than with lower doses but its not suppressing anything. As one sore is healing another one is breaking out somewhere else. At 1000mg 2x daily I begin to feel normal again, but I am afraid this dosage is dangerous to sustain long term. I have also tried acyclovir 200mg 3x daily but i gave up on it after a week since i had a break out on it. I understand this is unusual my doctor has said its impossible to have resistance to the drugs. Also with no drugs I have SEVERE constant lymphadnopothy which is extremely painful, it is mostly controlled at 500mg/2x daily but there is still some swelling.  I have about 30 sores on my face (several areas) and my eyelids are somewhat affected (blepharitis) and I have  nerve pain daily.

I do not have HIV and a recent blood work showed nothing abnormal.

Are there any options for me ? I have read about a drug from italy called Lupidon. I know this is not approved in the US but the manufacturer said they could provide it with a doctors prescription. Would it be possible/legal for my doctor to administer this drug? I understand there is controversy surrounding effectiveness, however I do not really care.

Are there any off label drugs which can be useful for herpes? I have read therapy with Tagamet and zinc may have some benefit but I cant find any good information on that to show my doctor. Also what about globulin or interfereon injections ? Are there other immune modulating drugs or treatments that can boost my t-cells against this virus to keep it down?

Is there a type of doctor who may know more about this than my PCP ? Have you ever encountered this before in  a healthy person?

[Terri Warren, RN, Adult Nurse Practitioner]

You're welcome.  I would strongly suggest that you and the person who says you infected them pay close attention to lab test results to guide your futures.

Terri

[ntdc]

Thank you so much for all of your help :-)

[Terri Warren, RN, Adult Nurse Practitioner]

Are there any options for me ? I have read about a drug from italy called Lupidon. I know this is not approved in the US but the manufacturer said they could provide it with a doctors prescription. Would it be possible/legal for my doctor to administer this drug? I understand there is controversy surrounding effectiveness, however I do not really care.

Controversy surrounding effectiveness is generous.  It has not been shown to be effective, period.  If you want to use it, I would say strongly buyer beware and best of luck finding a US physician that would write a prescription for it.

Are there any off label drugs which can be useful for herpes? I have read therapy with Tagamet and zinc may have some benefit but I cant find any good information on that to show my doctor. Also what about globulin or interfereon injections ? Are there other immune modulating drugs or treatments that can boost my t-cells against this virus to keep it down?

None of the drugs or treatments you describe above have been shown, in good studies, to be effective treatments for genital herpes or oral herpes.

Is there a type of doctor who may know more about this than my PCP ? Have you ever encountered this before in  a healthy person?

Perhaps in infectious disease doctor.

[ntdc]

Terri,

Thanks for your follow up. I have heard this from several doctors. During my initial outbreak 2 doctors said had no visual signs of herpes but one of them prescribed famvir 1000mg x2 (12hrs apart) to cover me. My symptoms (pain and night sweats) subsided within 8hrs of the first dose. My current PCP believed my having some response to the medicine and the absence of pos. tests for many other things indicated possibility of herpes.

AFAIK there is a 10% chance of false neg. on the blood tests for HSV1

Both myself and the person I had transmitted it to previously tested negative for HSV by IgG.

The symptoms on the face are exactly what you see when you look for a picture of cold sores, blisters, opens up, crusts over in a week or so and slowly goes away.

I understand you feel its unlikely I have it but under the assumption I do, is there a way you can address my initial questions?

Thanks and Regards

[Terri Warren, RN, Adult Nurse Practitioner]

from everything you have told me about your testing and your symptoms, nothing sounds like herpes to me.  And no, three doses of medicine would not have messed up your test results.  

As far as someone getting herpes from you, diagnosed by exam only, that may well be inaccurate as well.  Or they could have had herpes for a long time and didn't know it.  If suppression is ineffective with them as well, I seriously doubt the diagnosis because suppression really makes a difference (though may not be perfect) in most everyone.  There is just nothing here that makes me think you  have herpes at all.  Two large studies have found that when clinicians diagnose herpes by visual exam, they are wrong one out of five times, that's why we rely on lab testing, not exam, to sort out who has herpes and who doesn't.

Terri

[ntdc]

Oh I also should add I have been tested negative for syphillis, hepatitis, HIV (several PCR and Ab tests) and mononucleosis.

Swabs were take-home (because it takes a few days to get a doctors appt with my PCP) and they were done by viral culture. I delivered to the lab the day of swabbing, usually or once it was 8hrs later.

I appreciate you taking the time to respond. Thanks and Regards

[ntdc]

I was diagnosed by symptoms from my PCP.  I was concerned about herpes because I was experiencing alot of pain about 36hrs after an encounter. Other STDs were ruled out and I  had been taking Zithromax anyway so it would have killed anything bacterial.

so I went in for an exam
At first was just genital symptoms I get no obvious lesions genitally just pain. I have had some lesions on my butt though I could not get a very good look seemed like a pimple or rash but EXTREMELY painful like a pimple sitting on a nerve.

The lesions on my face are very characteristic of herpes/cold sores except they are widespread not just near the lips.

I have had 3 negative tests by blood , at 1 wk post exposure negative IgG + IgM after learning the test was worthless i switched PCP. I have since had a test at 6wk and 12wk post both negative for both types.

Also I have had 4 negative swabs.

I was not taking suppressive meds the whole time only since a bit after my 12wk test. Before that I was taking it frequently but for episodic use. Prior to my 6wk test I had only taken 3 doses of meds I believe. Is that enough to mess up a blood test?

Opthamologist said  I did not have corneal herpes from what he could tell, but my eye probs may be blepharitis which can be caused by viruses like herpes.

After all the testing I started to believe maybe it was not herpes and just weird acne but someone then contracted it from me. They were diagnosed visually and given valtrex 1000mg a day for suppression it has been ineffective in this person as well.

[Terri Warren, RN, Adult Nurse Practitioner]

Let me ask you a few questions.  How were you diagnosed with herpes?  Swab test from a lesion, blood antibody test, an exam?  And if via lab test, do you have HSV 1 or HSV 2?

Terri