Katy1983

I don't no what I have. We found it at some old fashionend store. The man makes medicine which isn't for sell anymore. So he makes a llt of this stuff. There were two kinds of alum. The ammonium sulfate alum and another one. So I don't no if its the salt-mineral type ;-) but it works. I also think it has finally stopped spreading. No new blisters for a couple of days now. Used bandaids on each sore and blister that was still present on the parts where skin was touching skin. On the bandaids I put some alum mixed with zink. It looks likes it is working. Knowing that it is indeed HSV-2 also helped in dealing with it. I've stopped surching the internet for cures or other diseases. Acceptance is still a long road ahead but it is a good start.

It's a great list. Thank you for sharing! I think I will read this often the next couple of weeks :-)

In an other topic I saw you mentioning ammonium alum. I did find a store who sells it, it's indeed difficult to find. Very cheap. It hurts a lot, but the stuff actually works! :-) I'm very happy with it ;-)

@tsv33 I can't tell you anything about pricing, because I live in the Netherlands. Doctor told me it’s quite expensive but over here the insurance company is paying for it. We don’t get to see the price in these cases. We only know what the costs are for meds when something isn’t paid by the insurance. However, I can tell you something about having any side effects.... I'm on a high doses Valaciclovir (Valtrex) for a couple of weeks now. 2000 mg a day. I've experienced some headache the first, approximately, 3 days but that was about it. After those days I didn’t had any other side effects.

Thank you for being honest. However I got the date all wrong. I'm on valiciclovir for 3 weeks, almost 4. Signs of urinary infection started the 9th of february which turned out not to be urinary infection. Started with antibiotics the 11th, baceme sick at the 12th and turned in sick at work. So it is lasting almost 6 weeks non-stop now. But you are right. I will have it for life. I think yesterday I felt a little bit sorry for myself because of the positive test results. I think maybe in the back of my mind there was a tiny bit of hope test results would be negative. Test results being positive means I can learn to deal with it better now, just like you said. Thanks again voor answering and sharing. I know it will get better eventually.

Got my test results back today, tested positive for HSV-2, faster then I expected :-( But actually, I'm not very surprised about the positive test results. Still on Valiciclovir, glad I don't experience any side effects. Although I think it's not helping, who knows how it would be without it. Maybe everything is healing faster, because of it. But it doesn't prevent new blisters coming. Not using de meds for the Hidradenitis anymore, because I'm just not allowed. Afraid to use the same towel for different parts of my body. Afraid of being touched or touching my partner. Afraid to even use toilet paper. Using zinkoxide, and taking Epsom salth baths more regular, and so on. Mentally this will do me no good at all, I know, but how do you stop negative thoughts when it just doesn't seem to go away...Maybe I'm on the Herpes thing to much and maybe I need to let it go more. I'n going to bed with it and wake up with it. I’m realy getting sick and tired of it. It just doesn’t seem to go away. Yesterday when I looked I was very positive. All was nicely healing. Didn’t get any new blisters for a few days. Today, new blisters again. The only thing I see is that it seems to be healing faster and with less pain. Some itching and burning, but no need for pain medication anymore. So that’s a positive thing. But a few days without new blisters is followed up by new blisters again. How long is this going to take? It started around the 25th of February…. I try to stay positive but it’s getting harder and harder this way.

@ra1956 I think you are right. There are much worser things a human can get instead of Herpes. The thing that frustrates me is the fact that one will have the virus for life and outbreaks can come whenever the immune system isn’t working so well. The fact is, I would rather have a Hidradenitis outbreak instead of Herpes. Although there is no cure and treatment, with Hidradenitis I don’t have to be afraid of spreading or infecting my partner, I can have sex or can be physical with the one I love as close as we both want it. Yes, Hidradenitis is very painful and can be a big part of your life. Because of all the scars you don’t feel womanly often while looking at womanly parts of the body, but I have accepted that a long time ago. I have it for 12 years now. I learned to live with it. I would rather have HS instead of Herpes… But then again, I know someday I will accept it and someday I will learn to live with it, just like I did with the Hidradenitis. Because in the end it’s just the way it is unfortunately. And just like you say: I’m shocked (not only when it comes to HS), with all the reading I have done about Herpes, how many doctors are clueless about Herpes. Especially when reading how many people are infected by it, without showing symptoms. On this site I read it for the first time that it’s possible to get infected by a silent carrier, or a asymptomatic carrier. Information in the Netherlands all says that you always get infected by blisters or sores and that it’s impossible to be infected without it. No one of my ex-partners or my former partner, ever has showed blisters or sores around the mouth or genitals. My new partner and myself only had it around the mouth when we both were children. Long, long time ago.

@beachluvr and all others who are interested; I promised to come back to the conversation I had with my dermatologist. He gave me two options, but he doesn’t know it for sure…there aren’t many patients with a more heavy form of Hidradenitis and Herpes. 1. The option my own doctor mentioned; spreading the virus (inoculation) by using meds for the Hidradenitis and did not see spots, blisters or sores and thus spreading it to other parts of my body myself. 2. He did not see a lot of patients with wide spread Herpes because of Hidradenitis. He was honest and stated not knowing it for sure. But, it could be like with eczema spreading with Hidradenitis. Because my skin is badly damaged since the outbreak of 2011 and the health of my skin isn’t good, plus using steroids on the skin every day which makes the skin very thin, he thinks it’s possible for the Herpes to spread like it does with eczema, without inoculation or touching blisters and spreading them. (thin skin, damaged skin, poor health/immunity of the skin) 3. Inoculation because of no antibodies on the weaker parts of my body because of HS I’m not allowed to use the meds I’m normally using two or three times a day for the Hidradenitis, until the Herpes is fully gone. (assuming the test will be positive) This can turn out to be a problem eventually, because if I don’t use them, the Hidradenitis will come back. Right now I’m sometimes having one or two abscesses which will heal very soon. Stopping with the meds can cause another big outbreak just like the one I had in 2011. So…if that’s happening, they will put me on the antibiotic cocktail of Clindamycin and Rifampicin for a minimum of three months. But, only when necessary because both antibiotics combined aren’t very good for the immune system and because of that Herpes outbreaks can come more often or worse. So only when necessary. The Bactrim (co-trimaxazol) you are getting, isn’t subscribed in the Netherlands for Hidradenitis. Only for the side effects, so to control further dermatitis. But usually (because of the side effects of co-trimaxozol, they use Flucloxacilline. The cocktail of Rifampicin and Clyndamycin heals the abscesses and another side effect is that there will not come new abscesses. But it’s a heavy combination which needs strict monitoring of blood and vitamin levels.

I forgot to mention: most doctors here still treat it the way your doctor knows. So knowledge about the disease doesn' spread soon. In fact. Most of the doctors here still treat it like normal acne presuming that losing weight or stop smoking cures Hidradenitis. It's the same for all of the immune diseases: triggers Re smoking, bad eating habbits, stress, not enough sleep and being overweight. Doing it l right does not cure HS. I'm still shocked how many doctors don't have the most recent knowledge about HS and still use old treatment meathods. But that's the way it is I guess. My dermatologist does not open the abcsesses anymore. They found out that scars and scar tissue is a great place for HS to start all over again. I know more from my dermatologist but I have to translate in proper English. I will do that this evening or tomorow. I'm typing on my smartphone now :-)

Posted in the wrong topic.

I forgot to mention: most doctors here still treat it the way your doctor knows. So knowledge about the disease doesn' spread soon. In fact. Most of the doctors here still treat it like normal acne presuming that losing weight or stop smoking cures Hidradenitis

I will answer more later but the information you've received about Hidradenitis isnt correct anymore. They discovered in new studies that there isn't an overproduction, but normal production. Only the body sees it as wrong and is fighting against the normal production. It's a recent studie in the Netherlands, one, two years at the most. I'll come back to this after work or tomorrow ;-) The antibiotic given here is minimal 3 months to a year. A cocktail of Clyndamicine and rifampicine. But most people react allergic. Thank you for sharing! I'll come back to it

@WCSDancer2010 and ChanelChanel Thank you for welcoming me and answering my questions. I still think it's ought there are so many discussion forums in the Netherlands, so this site is great! Unfortunately, Hidradenitis in the Netherlands isn’t treated with drugs who suppress the immune system. Although latest studies show it’s an immune disease, insurance companies aren’t very compliant with the possibilities of treatment. I have had Hidradenitis in a very mild form since I was 18. Sometimes a outbreak with one, max 3 abscesses. But that was about it. In 2011 however, I got my first big outbreak. I couldn’t go to work, I couldn’t sit, walk or wear underwear or clothes. I had huge painful abcesses in the genital area, under my breasts, my arms, my inner thighs, my butt. Until that point I’ve only seen doctors who treated Hidradenitis the same as normal acne. But that treatments didn’t work. Then my search for capable dermatologists began and I found one who studied Hidradenitis for years. It’s his study who is responsible for finding out it is not acne, but an immune disease. Also both of my parents are having Hidradenitis, but in a very mild way. There are no med’s or treatments. The only thing you can do is keeping your immune system and health as high as possible and when you have an outbreak, you can choose an operation like deroofing, some had skin transplantations, local antibiotics, steroids and a highly dosed antibiotic cocktail. Hoping some of it will work. There is one medicine however, which they found working on Hidradenitis but it’s a med for people who suffer from Crohn disease. They call it TNF-Alpha of Biologicals, but insurance companies don’t pay. Costs are about € 20.000- € 30.000 euro each year. You must have tried everything first, before your doctor can fill in a form for the insurance company. And then it's stil unsure if the Insurance company will give green light for treatment.These meds are only possible for the worst cases of Hidradenitis and they first give them to people who suffer from Crohn. I was one of the lucky ones with normal meds. I was on a highly doses antibiotic for about 1 year. A tricky combination of 2 heavy antibiotics. A lot of people are allergic for it. But it definitely helped. After that year they gave me meds to apply on my skin. I didn’t have a huge HS outbreak for 2 years now. But, I do have to use the meds for my skin, otherwise I will get new abscesses. So, no immune suppression for the HS… Now back to the Herpes. I’ve read a few things about Herpes spreading by people who suffered from eczema. Because that’s also a skin disease, Herpes tents to spread to other areas. And that made me wondering: could this also be the case with Herpes and Hidradenitis….logical thinking is making me think it could be possible. The doctor who treats my Hidradenitis has a waiting list for 2 months. (this is how it works in the Netherlands.) But I can call him, which I will do tomorrow. This morning I went to see my own doctor again and maybe the spreading to the HS areas isn’t hard to explain. While examining my body, all areas this time, he saw some spots in the Hidradenitis area which were already healed but according to him, wasn’t HS but Herpes. I can’t see that spots myself, not even with a mirror. He thinks that I, while using the meds for the HS on that body parts, infected myself on other areas. He also claims that because the weekend doctor was so sure of it not being Herpes, I probably wasn’t careful enough in the first 1,5 week. I did not touched the blisters and sores I saw and then touched other parts of my body. He thinks I touched blisters I didn’t saw and then touched other parts. It can be an explanation…. The blisters and sores which spreaded to the Hidradenitis areas are healing/healed. The new blisters, now open sores, are all positioned at the insight of the vagina. More specific both sites of the small labia. Again hurting to urinate. Doctor thinks this is a new outbreak, but the pain is much less then a few weeks ago with the first one. But, he did tested for Herpes today. I think this needs some more explaining. Because English is not my first language, I tend to forget important details > to focussed on writing the best English I can..... The weekend doctor I went to see with my pictures and open cold sores, asked me if there were blisters before the sores. I told her I’m a HS patient, so I didn’t checked when I felt pain in the genital area. This pain is common to me if I’m getting a new abscess. It’s the same pain everyone with Herpes is describing. HS gives the same pain with a new abscess. Itching, tingling, small red spots, and so on. So I didn’t know if there were blisters or not. She stated that since there were no blisters, it wasn’t Herpes. She sent me home with a Lidocaine gel and that was it. The next week following I was still sure about the Herpes thing and I went reading and reading and reading. Stories I found on the internet were different. One had blisters, one had no blisters but only sores, and so on. When my own doctor was back from vacation I let him see the pictures. He was sure about Herpes. While examining my body, there were no sores or blisters that he could make a swab off. Everything was too much healed. The second time he examined me (after 5 days of Valaciclovir 2000 mg a day), there were blisters. However, he stated that these blisters did not make a good swab and that the test would probably be negative. The blisters never became sores however. This morning when I waked up, the blisters turned into painful sores, some were a little bit bleeding. This were the sores I was waiting for, because now he can make a good swab. So he did. Test results in one or 2 weeks. He still is very sure it’s Herpes however. But your right. We don’t know for sure if it’s HSV-2. The possibility for HSV-1 in the genital area is small however, very small I think (but I’m not a doctor). Because of the Hidradenitis, I have a lot of scars down there. Ugly blue scars and it looks like a minefield sometimes. Because of that I don’t want oral sex. I don’t feel comfortable and there’s nothing womanly anymore down there for my feeling. Last time I had oral sex ….. I was about 21. And I don’t know if the partner I had then ever had Herpes Labia. So this is why my own doctor thinks it’s HSV-2. But in the end, if it is Herpes 1 of 2 isn’t important. It’s in the genital area and I will have to accept that and cope with that. But 2 chronic diseases in one area is hard to understand. It makes me sad and angry actually. But negative feelings won’t help, so I’m not trying to go there ;-) So, still have to take Valaciclovir, back to 2000 mg a day and wait for the test results... Thanks again!

First of all, English is not my first language. So please forgive me any spelling or grammar mistakes. I tried my very best! I’m a young woman living in the Netherlands, searching for information. There aren’t mutch Dutch sites and the sites with options to discuss or ask questions about Herpes are all closing. So I’m hoping to find some answers here. I also discovered there is a huge gap between the information about herpes in the Netherlands, or in America or the UK. It seems to me, there is more information to find on non-Dutch sites. I also have the skin desease Hidradenitis and in the Netherlands there are no other HS patients on the discussion forum, who also suffer from Herpes. I’m hoping to find some here. This is going to be a long posting, sorry for that. I’m diagnosed with HSV-2 about 35 days ago, that’s when the first symptoms began that is. I’ve never had an STD and tested always before unsafe sex with my partners and after braking a relationship. I’m30 years old and only had 3 partners in long relationship with whom I was sexually active. Both my new partner and I got tested first and are having unsafe sex for about 4 months now. So the primary infection started 3 months after unsafe sex and not within the first week. At first I thought I was having a urinary infection, starting with antibiotics the second day. The third day I got very ill, knowing this wasn’t a normal urinary infection. At night I got a high fever, a strange pain at my lower back, downwards to my legs. I also was feeling a terrible pain between the vagina and the anus. However, I did not look down there to see what it was, because I also have the skin disease Hidradenitis. The pain I felt was the pain I usually feel when having an outbreak of Hidradenitis. So the first morning I went to see my doctor who thought the urinary infection went up to my kidneys. He gave me another antibiotic and I was sent to the hospital for an urinary test. The days following I became more Ill. In the weekend I still couldn’t go to the toilet without crying and enormous pain and looked down there with a mirror. When looking in the mirror I saw cold sores. I have taken pictures of it, because I didn’t know what they were. That weekend I visited another doctor to let her look at the sores on my body and to let her see the sores on the pictures I had made. While searching the internet I came across Herpes infections. When she looked at my sores and the pictures, she was for shore it was not Herpes and sent me home, after some reassurance. Looking back, I should not let her sent me home without examining the sores, because the urinary test for urinary infection was negative. The next week I still was in a lot of pain and the antibiotics didn’t do anything. I went to my own doctor again, but the sores I were healed. At that point I already knew for shore it was Herpes. I only had de pictures of the sores to let him see. While looking at the first picture he told me that it was definitely Herpes. But there were no sores anymore for further investigation. He prescribed me, because Hidradenitis is an auto immune disease, 2000 mg Valaciclovir a day for 5 days. At the fifth day I again had sores and blisters, but on other places on my body. Possibly because of my skin disease? He prescribed Valaciclovir for another 5 days. After 10 days I still discovered new blisters and sores, constantly on other places of my body. It looked like the blisters and sores are dancing over my body, finding the places where normally the Hidradenitis outbreaks ar. But Hidradenitis and Herpes don’t look alike, and this is definitely Herpes. He prescribed Valaciclovir for another 3 days. Totally I have taken 2000 mg Valaciclovir for 13 days. I was very positive because it all looked like it was starting to heal and go away. Last Monday evening I was feeling a terrible itch around/ in my vagina and new it was starting all over again. I immediately started taking the Valaciclovir, but as my doctor prescribed now, a 1000 mg a day. Monday there were now blisters or red spots, just a terrible itch. Today I looked in the mirror and I saw a lot of blisters again. I’m starting to feel hopeless because the anti-viral meds don’t seem to work or do anything. I don’t smoke, I eat healthy, I don’t suffer from stress, I’ve started taking high doses of Vitamine C and L-Lysine and stop eating foods high of arginine. So now I’m getting more and more questions, on the Dutch forums the answers can’t be found. - Is this still a primary infection? Dutch sites claim that the primary infection isn’t longer than 4 weeks, or else it’s HIV. But I have no other STD’s and I’m not HIV positive. Sites in America and the UK however, state primary infection may take 2-6 weeks. - Or did it start over again for the second or third time in about a month, fast following after primary infection? - Does anyone know how Herpes outbreaks look like, when suffering from another skin disease like Hidradenitis? - Is it possible that blisters and sores also appear on the places where usually Hidradenitis has an outbreak. Because I was very careful, not touching blisters and after that other parts of my body. Not using towels on Herpes and then other parts of my body. - I’ve ordered Dynamiclaer but it doesn’t seem to do anything My partner isn’t having any symptoms. In the Netherlands blood test aren’t an option if you’ve ever had a HSV-1 infection. We both have that virus, but we both had our last symptoms of that when we were a child. The only thing my new partner knows is that he had some sort of infection on his penis about 15 years ago, very painful, bit he didn’t know what it was then. Maybe he did had Herpes back then, but that is something we will never know I guess. Thank you for answering in advance.