Question:
HELLO ALL,
I used to post to this site, then stopped when I just about despaired of finding anything that would stop my increasingly frequent otbrks. I vowed to come back only if with good news I could share with those who, as I did, suffer physically & emotionally with little apparent hope in sight. Well, I'm back!

THE GOOD NEWS:
Foscarnet 1% cream, applied to the genital area twice daily until all 60g of product were used up, stopped my outbreaks cold.
I have been completely outbreak free from the time my treatment was completed in mid-November 2004 until now, mid-April 2005. I have had no outbreaks even when very stressed or ill.
In early March, for the 1st time after 2 years together, I've had unprotected intercourse with my husband (who is HSV1 and HSV2 free and we pray will stay that way) - and so far he's OK, knock on wood. The fact we're having intercourse at all is a miracle.

WHAT FOSCARNET IS:
Foscarnet (generic name is "foscavir") is a powerful antiviral drug used to treat HIV+ patients who have persistent, nonhealing genital herpes lesions. It is administered intravenously to HIV+ patients and is a common drug for treating HSV2 in these patients. Foscarnet can have serious side effects when administered intravenously but not when used as a cream in a less concentrated form.

WHY FOSCARNET CREAM:
I was looking through Medline when I came upon an abstract of a 1998 case of a healthy, HIV-negative woman in her early 30s (I think) who had persistent HSV2 otbrks & lesions that didn't respond to conventional valacyclovir (Valtrex) treatment. After being treated with foscarnet 1% cream she stayed outbreak-free for over a year. I printed out that abstract & took it to my new doc. Bless her, she read & listened & agreed to prescribe it.
That cream has brought me as close to "cured" as I can hope to be until a total cure is found.
I'll post a link to that page soon as I find it again.

HOW TO GET YOUR DOCTOR TO PRESCRIBE FOSCARNET CREAM:
Foscarnet 1% cream is a compounded medication. In other words, your doc will have to contact a compounding pharmacy to get them to make the cream for you.

Amount: a tube of 60g, administered 2x day over 1-2 months, has been enough for me.

Concentration: 1% to 3%.

Cost:
the cream is very expensive (about $180) and may not be covered by your insurance because it is not indicated for topical use nor for use in non- HIV+ patients.

Ways to lower cost:
your doc must be very persistent in finding a compounding pharmacy that has done this kind of compounding in the past. If they order the raw material in bulk rather than specifically for you it will be much cheaper for you.

How to convince your doc it's right for you:
if you have a history like mine of persistent HSV2 outbreaks that have not responded well to various treatments you must find a doc who is willing to believe you and willing to help you. I went through years of dismissive, indifferent, or ill-informed docs who kept offering me the same bloody treatment regimens despite clear evidence that these regimens didn't work.
If you can't find a sympathetic doc I implore you to find a specialist in infectious diseases, preferably a professor at a teaching hospital with publications on the subject of STDs, particularly HIV and HSV. Find the abstract I'm talking about, print it & bring to your dr's consultation.

MY HISTORY:
27y/o, Caucasian female, HIV-, non smoker, very light social drinker,
fit, active, decent to healthy diet, daily stress=medium to light
infected since October 1999

In the past I got an HSV2 outbreak on my genitals 4 days before my period, any time I didn't get enough sleep, and every time I got a cold, as well as many times without any apparent reason.
I was also sometimes contagious during the few weeks of reprieve I would occasionally have. This I found out when my then-long term partner discovered he had become infected during the time when I thought I was "safe".

Despite statistics that indicate that the otbrks become less frequent with time, I observed my outbreaks becoming worse, not better, as the years passed. From January 2004 through November 2004 I had outbreaks about 2x month, sometimes lasting for up to a week each. I was becoming depressed and frustrated from the physical discomfort & the total lack of sex within my LTR due to my condition.

WHAT I USED & EXPERIMENTED WITH W/O SUCCESS SINCE 1999 UNTIL NOVEMBER 2004:
-Acyclovir, up to 1750 mg / day, for 1st otbk & for daily suppressive therapy
-Valtrex, up to 500mg x 4 / day, for daily suppressive therapy, otbk prophylaxis, & shedding (I infected my bf and a few years later my long term partner while on a 2000mg x day regimen of Valtrex)
-Famvir, up to 500mg x 3/ day, for daily suppressive therapy, otbk prophylaxis, & shedding
-Cymetidine, up to 250mg x 6/ day
-marine algae, 2 pills/day for 1 month
-Choraphor (the "www.neveranoutbreak.com" drug), applied topically
-hydrogen peroxide, applied topically
-tea tree oil, applied topically
-Lysine pills
-olive leaf extract, 12 drops in water 3 x day
-lots of broccoli + no simple sugars for weeks!
-lots of echinacea

GOOD LUCK TO ALL. DON'T DESPAIR UNTIL YOU'VE TRIED EVERYTHING!

Answer:
I am curious if you are still outbreak free. Please let me know!

Answer:
After the initial treatment with Foscarnet 1% cream in late Oct '04 I remained outbreak-free until late April, 2005. I was not taking any medication during that period. The painful April otbrk lasted for over a week. It was probably related to insecticide spraying in my neighborhood.

Since late April I've had 2 more otbks, a small one in early June (probably due to irritation from vigorous intercourse) & a slight irritation in mid-July '05.
Since the April outbreak I'm careful to take 250-500mg Famvir/day as suppressive therapy. I don't want to let the viral count build up in my body.

Each time I treat myself 2xday with Foscarnet (very little goes a long way) combined with about 750-1000 mg Famvir/day for 3 days, then resume a regimen of 250-500mg/ day.

There is evidence that some HIV-positive herpes sufferers stop responding to intravenous Foscarnet after a few treatments. There are many cases where Famvir no longer helps, either. I haven't seen anything regarding cream use in HIV- patients, but it's possible both medicines may stop working for me eventually. I may soon have to find substitutions, so I'm always on the lookout for studies on other drugs with similar functions.