It won't go away. Help.

[chiefinspector]

I've got what I think is a unique problem and I honestly think I might be the only person going through this. Please, read my post and if you have any insight don't hesitate to say something.

I was diagnosed with herpes about 4 years ago. I've come to terms with it, that's fine.

My problem is, I have breakouts that won't go away. In fact, I'm not even sure they are break outs. It's truly perplexing, and I've had NO luck with the many doctors I've been to. I've also been trying to find an STD expert or trying to find information on the web. Maybe someone here will have a similar occurance.

I get your typical OB maybe 1 - 2 times a year. Blisters etc. But I also have ones (or I think they are OBs) that are different. They are more like larger patches of skin that are raised a bit and red. The skin dries out and flakes. Almost like a sun burn. The skin in the area is very weak and tears easily leaving small cuts in the worst cases. I'm taking meds (I've done Valtrex & Famvir supressive) and no luck. They won't go away.. Just when it's about gone, the next day its red and flaky again. I thought maybe it was eczema but my symptoms don't look like any of the pictures I've seen.

I wish I could find an STD expert in Maryland, but I've had no luck. Anybody got any advice?

[Cherry Cola]

That really doesn't sound like the type of herpes OB's I've gotten,but everyone is diferent.have you showed these patches to your doctor?If there's an STD clinic or Planned Parenthood near you I'd go there and check it out.The pictures on the net I've seen of herpes,well they are mostly of the worst cases and looked nothing at all like what I had.

Good Luck!!

[artist_atl]

I feel your pain

Your symptoms sound similiar to mine. My OBs have been of such variety that I'm not always sure if I am having one or not. When I was first diagnosed it was the typical blisters in one area. Since then I have had these big wide bumps that come up under the skin and flake as they heal, without ever looking like a blister. The healing time is very slow, and there is almost persistent irritation. Since I am also prone to body acne, this has also confused the issue.

Have you been checked for other STD's also? If not, that might be a good idea.

I have a list of herbal remedies, foods to avoid, etc that I could send you. I haven't tried everything yet but am doing all that I can afford. I am watching my diet, trying to get more sleep, etc and am going to start on Clorophor to see if that helps.

We should keep in touch and share info.

[Slimeypebble]

Similar

I have also experienced similar odd outbreaks recently. I have had an outbreak that just won't go away since August. This is the longest ever...and I don't know what to do about it. I was just prescribed a dose of Famvir, but it did not help at all. I haven using Zaclofir cream..this helps keep it at bay, but as soon as I stop using it, the redness and other symptoms come back. This outbreak almost just looks like chapped lips, but it is not.

I am very frustrated. The doctors that I have gone to do not seem to have any idea of what to do. They don't even believe me when I tell them I am in the middle of a 6 month long outbreak, until they see the positive test results.

So if someone else finds out something that works, please let me know!

[wwdamron]

I have also experienced similar odd outbreaks recently. I have had an outbreak that just won't go away since August. This is the longest ever...and I don't know what to do about it. I was just prescribed a dose of Famvir, but it did not help at all. I haven using Zaclofir cream..this helps keep it at bay, but as soon as I stop using it, the redness and other symptoms come back. This outbreak almost just looks like chapped lips, but it is not.

I am very frustrated. The doctors that I have gone to do not seem to have any idea of what to do. They don't even believe me when I tell them I am in the middle of a 6 month long outbreak, until they see the positive test results.

So if someone else finds out something that works, please let me know!

How long have you been taking Famvir and how many milligrams are you taking a day? It can take a few days to see results. You may want to take Lysine an immune booster at least 1500 mg a day, this may take at least a few weeks to help. Also a multi-vitamin daily and a good diet will help as well. Don't worry it will eventually go away. It just might take soem adjusting in medication strength , hopefully your doctor will work with you on it, if not see another doctor.

[wwdamron]

I've got what I think is a unique problem and I honestly think I might be the only person going through this. Please, read my post and if you have any insight don't hesitate to say something.

I was diagnosed with herpes about 4 years ago. I've come to terms with it, that's fine.

My problem is, I have breakouts that won't go away. In fact, I'm not even sure they are break outs. It's truly perplexing, and I've had NO luck with the many doctors I've been to. I've also been trying to find an STD expert or trying to find information on the web. Maybe someone here will have a similar occurance.

I get your typical OB maybe 1 - 2 times a year. Blisters etc. But I also have ones (or I think they are OBs) that are different. They are more like larger patches of skin that are raised a bit and red. The skin dries out and flakes. Almost like a sun burn. The skin in the area is very weak and tears easily leaving small cuts in the worst cases. I'm taking meds (I've done Valtrex & Famvir supressive) and no luck. They won't go away.. Just when it's about gone, the next day its red and flaky again. I thought maybe it was eczema but my symptoms don't look like any of the pictures I've seen.

I wish I could find an STD expert in Maryland, but I've had no luck. Anybody got any advice?

You could try an over-the counter moisturising cream. Have you seen a Dermatologist?

[Windbraker]

Same here

I've contracted herpes over 7 years ago and since then I've had to occasional outbreak, at least a few a year. It stinks, but it is something I could live with.

Now 7 years later, married, I've had an outbreak for the last 6 or 7 months. It fits the symptoms described above. Often it just looks like it is irritated skin that is super sensitive. Sometimes it is almost gone and the next day it is back again. once a month I get really tired, and feel sick and know that it is about to get worse again.

I'm taking vitamins, making sure I sleep enough, taking the lysine pills, but nothing seems to work. And my resistance seems to be fine because I'm not getting any colds, or getting sick in any other way. How are the previous posters doing? Has it stopped for you guys?

[Windbraker]

updates

Please does anyone have an update? Now going towards a year of this...

Seeing a dermatologist, but they just prescribe more valtrex plus topical cream. Nothing seems to be helping....

[Destny]

I wonder too. The description of the skin is exactly what I have been going through for the last 5 months non stop. I hope one of us figures it out and then they share so maybe we can all go back to normal.

[Windbraker]

Yes, that would be very helpful if someone did find an answer. Some of these posts are from 2005. What happened? Did you finally go back to normal outbreaks? I haven't been able to be truly intimate with my wife for close to a year now. Plus the fact that it almost goes away, but comes back on a weekly base means that I lose 1 to 2 days feeling dead tired, super emotional. It's awful..

[writemegirl]

I've had similar things for the past year. Tried all 3 antivirals, and while Famvir works the best, it doesn't kick it completely. Diet and lifestyle changes, as well as supplements haven't helped. A topical mix I make myself has helped the most. I'm at a loss, too, and am thinking about finding an infectious disease doc.

[Windbraker]

I recently got referred to a dermatologist. However it seems that they do not know either what to do besides prescribing more valtrex.

That would also be my next step. I also heard about special std doctors that have specialized in this area.

Let me know what you do and what the outcome is?

[writemegirl]

I found an OB/Gyn in my area who s'posed to specialize in HSV, so I'm going to see if I can get in to see her soon. We'll see what happens.

[rusjohn]

all things are prossiable in God name

Its sad that people are sometimes too judgemental. It can be treated and as long as you follow the treatment, H will be cured so dont despair .to your explination it sound like the H a friend had some time ago.can you email me on (rus_john at yahoo dot com).

[Windbraker]

what do you mean by that Rus?

[poeticmosher]

This is happening to meee.. I'm just going to keep piling on various combinations until it works. Lots of money going down the drain.

My first outbreak seems to never want to go away.

It's a bummer.

[tide969]

I've had this disease for almost a year now & have had constant back to back weekly outbreaks! I've tried everything I know including all 3 of the potential HSV Meds prescribed by My Doctor and still no luck. I also, have spent a ton of money on aimless treatments to stop these outbreaks. None have been successful! My medicine cabinet looks like something out of a warehouse. I just wish that the FDA would step up the process on these new & upcoming drugs!

[writemegirl]

@riptide969 . . . same here. I joined positivesingles[dot]com awhile ago, and it has a Treatment Stories section. I hadn't looked at it until this week, and I was astounded by all the stories from people who shared how the antivirals hadn't worked for them either. Most went off the antivirals and onto lysine and other things. One story in particular was about having back-to-back OBs while on the antivirals, and when that person went off, the OBs stopped being back-to-back. That person still has OBs from time to time but not like it was previously. Maybe some experimentation would be a good thing? I stopped taking Famcyclovir yesterday. IDK if I'll go back on it or if I'll stay off it, but when I STILL have to take lysine along with the drugs to keep the prodromes at bay, I wonder which is doing me the most good--the drugs or the lysine. I know what I'm thinking, and I figure I've been battling constant OBs for the past year (I'm in year 15 of having HSV), so what's a few more days, weeks or months trying a new tactic.

[Windbraker]

thanks writemegirl

Keep us posted. I've been using a topical cream for the past 2 weeks. Something my dermatologist wanted to try in combination with the regular drugs.

So far it just looks like sunburn that won't go away. It hasn't cleared at all, which it used to before the topical cream. However at least it isn't coming back the way it did either. Which would mean one or two days of extreme lethargy and just a general crappy emotional state.

If this doesn't work I will stop taking any medicine whatsoever. Thanks everybody for keeping us posted on what you are trying and what is working etc.

[writemegirl]

I've been off Famcyclovir since Monday, Sep 5th. The tingling, twinging, crawling sensations in my face are gone, the OBs on my buttocks are slowly getting better and they don't throb like they used to, and I've had only 5 spots show up on my left inner thigh.

I'm taking 2000m lysine, 400mg garlic, one kelp pill, multi-V, super B-complex, C, D, and a herbal supplement for sinuses (Immune Balance Sinus).

Topically, I'm applying a blend of oil of oregano, naouli, melissa, sweet almond oil, and vitamin E oil to my buttocks and thighs 3-4x per day, and at the base of my spine and neck nightly. I've been doing this for a month.

Feeling so much better the past couple days.

[tide969]

Writemegirl, you may also want to try Prunella Vulgaris & Siberian Ginseng! Those along with the above mentioned combinations may help you even more. They help me a tiny bit more but I still get outbreaks back to back. I think they delayed them for a few days more anyway.

[writemegirl]

I've read a lot on Prunella Vulgaris. The only thing I thought siberean ginseng was good for boosting energy levels. Thanks!

[Pleiades]

Hi Guys, I totally know what you all are going through, I 've been through this last year,

I've been fighting this demon called herpes for 9 1/2 years

For 7 years I was fine with only few ob's a year only on the same spot, everything was under control until I had my 1st daughter and my ob's changed location (more inside) and became chronic, was the same you described (They are more like larger patches of skin that are raised a bit and red. The skin dries out and flakes. Almost like a sun burn. The skin in the area is very weak and tears easily leaving small cuts in the worst cases.) doctors didn't know what it was... I had ob's for 6 months strait, it was a nightmare , it healed and 3 days and another ob, the stress was making sooo much worse, but I could not help myself from getting stressed out , specially when I felt the tingling coming... I had to see a psychiatrist because I was having panic attacks and was depressed, I lost weight because of it , my stupid doctor told me to go home and relax, I could not believe that I was going through thiat nightmare. I was going crazy..... the generic for valtrex was doing nothing, the anti -depressants helped a bit, I am married and my sex life was off for 8 months, I then decide to take valtrex (brand) for 1mg everyday I also used dynamiclear which hurts like crazy... and it made it worse...

The pain kind of went away after 2 months taking valtrex. but is always red and the skin comes off once in while.... I just got used with the way it is.. I search desperately online for answers , I found out that I we probably have ........call VULVODYNIA due to the herpes. It is a very sensitive area and the herpes damaged the nerves around the area... I saw pictures and it looked a lot like what I was going through... do not waist your time telling your doctor about this problem called VULVODYNIA they will look at you like you are out of space, they know nothing about women problems... I still have redness, I don't have the pain as much... sometimes ... I just don't think about anymore... it seems no doctor knows about this and there is no treatment that is effective for now..

I am so glad to know that I am not alone in this situation...

[jewelstheundefeated]

hi ,I had similar problems as you all not too long after i was first diagnosed.My lovely doctor told me to change my washing powder ,It worked I now use Dreft which is a none bio and really gentle,I also make sure and do an extra rinse.Now I only have to put up with the usual monthly outbreaks ,but after 20yrs you get used to them.Hope this gives you all some relief.:0

[writemegirl]

I think the best decision I've made thus far is going off all the antivirals. I'd taken them all and had been on famcyclovir for a month and a half, and a side effect is tingling. My face had been tingling and twinging like crazy since starting it, but all that went away after being off the meds for 24 hours. It's almost like night and day. Been off them almost a week, and things are clearing up on my buttocks. I did get a burning sensation at the base of my spine that also spanned from hip to hip and some tingling in my face the other day, so I took the OB does of some Valacyclovir I had on hand. Nipped it in the bud. I think I'll keep it on hand for OBs only for now, and keeping taking my supplements and vitamins and watching my diet.