Verneuil's disease AKA Hydradenitis Suppurative

[Horseofadifferentcolor]

Big hug Acid Yazz. I really hope you can find a good and knowledgeable doctor to help you. I had some doctors say it was little more than a pimple. Then they proceeded to stab me with a knife and send me home, acting like I was lying about how much pain I was in. So, print out everything on this thread to help inform your care provider. I had the run around for YEARS, before it got so bad it nearly killed me. I hope you can get this taken care of soon.

Start making plans with family or friends now, before surgery. You will need help while in recovery. Recovery can take weeks or even months. I do not mean to scare you, but just want to inform you that the surgery will be invasive and you will need support from others.

Super duper big hug

 

[Yas]

Thank you Chu!

I'll see if I can find that Osmogel in the pharmacies here but making a quick search I couldn't find any distributor in Paraguay.

I recently ordered DSMO cream that might arrive soon but if I can't find the Osmogel here I'll appreciate if you can send me some because I really want to at least maintain the issue while I find a better solution. Thank you very much for offering this help and support.

Before going through the surgery option I'll get some testing done in order to discard any other diagnosis. And I'll see with my doctor if he known another doctor who might understand the condition better. So I'll be posting back to let you know what I discover and if I need Dr. Guillem to speak to my doctor or something.

I don't have the 'multiple follicles' as you called them but I do have one black spot in the leg for about 2 years that always has some pus and also a small 'bult' like acne in the button that has been there for a long time already and doesn't drain no matter what. So I'll be checking everything and reporting back.

I'm glad to hear that Atreides is doing alright! :)

Thanks again and big hugs for all.

 

[Yas]

I've just read your post Horseofadiffer entcolor.

I'm so sorry that you had to go through that, but glad that you found a solution.

Thanks for the support! :)

 

[Laura]

Ultimately, it seems that surgery is the only cure. Once the glands are removed, that's it. It's brutal surgery, no question about it. Never saw anything like it in my life and I've cared for a radical mastectomy... And maybe that's why it is better to get it started and do them one or two at a time instead of the whole shebang at once as they had to do with Atriedes because all of his were in active eruption.

 

[Chu]

I'll see if I can find that Osmogel in the pharmacies here but making a quick search I couldn't find any distributor in Paraguay.

I will be on the mail this week. I just sent you a PM with more information. You can make a bandage, leave it on all night, and it usually drains the abscess. Could you send me your postal address on a PM or an email, in case it changed since the last time you updated it on FOTCM? Thanks.

Before going through the surgery option I'll get some testing done in order to discard any other diagnosis. And I'll see with my doctor if he known another doctor who might understand the condition better. So I'll be posting back to let you know what I discover and if I need Dr. Guillem to speak to my doctor or something.

Ok. Just keep in mind that there is usually nothing that can be said after the tests, or hardly anything. There can be an infection, but the problem is that most doctors ignore the cause and don't know where HS comes from. It seems to be genetic, and triggered by hormones and stress. But the actual cysts don't have anything distinctive in them.

I don't have the 'multiple follicles' as you called them but I do have one black spot in the leg for about 2 years that always has some pus and also a small 'bult' like acne in the button that has been there for a long time already and doesn't drain no matter what. So I'll be checking everything and reporting back.

Hmmm, yeah, those can be related. Any extra production of keratin, weird black spots, etc.

I'm glad to hear that Atreides is doing alright! :)

Thanks. And the thing is that if he hadn't had to suffer for so long before actually getting a proper diagnosis, the surgery would have been much easier. But even then, in spite of the long recovery, he is SOOOO happy he did it!!

Depending on how bad it is, the wounds after the surgery can be really terrible, as you can imagine from ready this thread. No doubt about that. But we HAVE discovered a few good ways of healing them, special bandages and things you can apply to them, etc. In fact, it has been on our minds to write a blog about it. So, there is a way to make it at least a little bit less terrible. But the sooner you get the glands removed and the affected areas cut off, the smaller the wounds are, and the shorter the recovery time is.

Keep us posted, please!

 

[Gaby]

Yazz, I'm sorry to hear about the ordeal you went through! I'm glad you found this thread

 

[Yas]

Yazz, I'm sorry to hear about the ordeal you went through! I'm glad you found this thread

Thanks Psyche! Your advice has been really helpfull during the crisis. I guess that if I had told you that it was a recurrent issue you would have derived me to this thread earlier.

Chu, I replied to your PM.

Thanks a lot everyone!

 

[number9]

Hello everyone,

For years I've had this in all of its various stages. At 1st I thought it was just boils, heritetary , as my mother had them as well, this went on for quite a few years, they would crop up and then drain and go away. Then it got worse and I went to the doc, was barely looked at, given antibiotics and sent on my way. It helped for a few weeks but came back again only worse, so I went to another doc, repeat and again it only got worse!

So, I just dealt with it but the pain got worse, the postules got bigger, there were more of them and the smell, well, you know. This was 2 years ago and I had diagnosed myself with furnuckles and some type of antibiotic strain resistant version of staph or MRSA.

This brings me to last month, where I talked to a fella I know that's knowledgeable about MMS and DMSO, he told me some amazing stories that he himself had experienced. So, I decided to try this out for myself and I started using it 10 days ago and it's working wonders!

It was by using this that I noticed and felt the inter-connectedness of it all, it's like it has tentacles and the MMS and the DMSO are tracking it down and killing it via the tunnels it's formed. It was by this method and by more research that drew me to knowing it's HS and to here as well. Thank you!

The hard skin is softening, there is no longer the putred smell that was there (even when there was no flare up!) I also have 100% more energy and am not running a constant fever, also of note is that my depression is lifting.

I'm not 100% over this by any means, that may take some time, how much I do not know but what I do know is that in the last 10 days I feel better than I have in a long, long time. Plus, I have hope now.

I'm hesitant to post exactly what I'm doing because of possible rules? I would love to share this with anyone that's going through this nightmare.

 

[Josi]

Hello number9, and welcome to the forum!

DMSO is very good , but MMS is very dangerous. Please do a search on the forum. Here is an excellent article on Sott:

http://www.sott.net/article/213275-MMS-Miracle-Mineral-Solution-or-Trojan-Horse-Your-Body-and-DNA-Decide

 

[Zadius Sky]

Hi number9, welcome to the Forum.

Feel free to introduce yourself in the Newbies section. Nothing personal, just a little bit about yourself and how you found the forum. If you are unsure of what to write, take a look at how others on the board have done it. :)

 

[Yas]

Hi number9! Welcome!

I'm so sorry that you had to go through this. I would take the advice give by Rhiannon, MMS is very dangerous.

I'm glad that you are managing the issue though. :)

I think I should give an update myself: DMSO in cream has worked fine for me, the cyst is gone and I don't feel any pain. But if I press I can feel that there's something there and it's a little bit painful. I want to do something about it because I don't know when another flare up may come and be as painful as the last one.

So, even if it is not painful at the moment, I think the last experience was a sign telling me to do something about it before it gets worse.

That's it for now... :)

 

[number9]

I'm not interested in advice at this point, I'm old enough and wise enough to make my own decisions but I appreciate the concern. The facts are that a combo of MMS and DMSO is fixing this, plain and simple. I chose to step away from the fear and make a calculated decision and I'm glad I did or I'd still be miserable or worse.

Do your own research but just don't take the words from the .gov or net folks to make your mind up for ya or you'll just be twisting in the winds of uncertainty.

 

[Chu]

This post is simply to share the link to tonight's SOTT Talk Radio show, where we'll be interviewing Dr. Guillem.

http://www.blogtalkradio.com/sottnet/2014/02/02/hidradenitis-suppurativa-interview-with-dr-philippe-guillem

Many of you may not have read about this yet, or very little, so I'll just share what Laura posted recently on Facebook:

We'll be talking to one of the world's living experts on this condition. You may not know anyone who has it because people don't talk about it. It NEEDS to be talked about because we have found that more people suffer the torments of this life-destroying genetic condition than we ever imagined. So share this, please. If you suffer from repeating boils, often in private areas of the body, starting at puberty, you definitely need to listen.

 

[Yas]

This post is simply to share the link to tonight's SOTT Talk Radio show, where we'll be interviewing Dr. Guillem.

http://www.blogtalkradio.com/sottnet/2014/02/02/hidradenitis-suppurativa-interview-with-dr-philippe-guillem

Many thanks Chu!

Sounds promising. :)

 

[petite femme]

I know this is an old post and no one has posted on it in a while, but thought this was the best place for my comments. I have been diagnosed with chrones about 17 years ago. Recently in the last year and a half, I have had a boil on my right buttock. Been treating it with iodine and Epsom salt baths. I was not sure if it was the same thing that's referred to here or not. I have never, in all the time of having it, suffered like any of these other folks! It's been the same size, never drained or was painful.
I recently went to the doctor, just to finally be rid of it. The doctor said it was an anal abscess, with a fistulous. He also said that this was a common complication with chrones. The doctor put me on a very strong antibiotic regiment for two weeks taking, cipro and metronidazol. This just made me sick. I took those for about a week, before I went back and said I just couldn't do it. Was exhausted, weak with diarrhea and nausea. My food was just running right through me. It also had no effect on the abscess.
They took me off of them and said they were going to refer me to a general surgeon. That's where I'm at right now. I am blood type o positive. They haven't run any test or anything, just a rectal exam. I have cut out all carbs so as not to feed any infection their may be. Thought I would post this here and see if there was any advice about tests or about treatment. I really don't want to do any surgery, but from reading the post it doesn't sound as if there is another option. I have been on a paleo diet for about 6 or 7 years for my chrones, it seemed to work better than any medication at controlling it and feeling better. That's all I can think of right now, been feeling rotten due to the antibiotics for the last week, so had not really been doing anything. Just resting. I will hopefully be feeling better again soon, not that I'm not taking them. Any thoughts would be greatly appreciated!