Verneuil's disease AKA Hydradenitis Suppurative

[Voyageur]

Not sure, but the 'Royal Danish Navy Diving School' might be a contact for Hyperb(aric) [same root (gas presser)] chambers; where they are and if they can be leased or used for therapy (they likely don't use them much and a number of dive organizations may have them and be willing to treat people).

RDNDS = _http://www.idsaworldwide.org/html/ff06_denmark.html

The National Hyperbaric Center has clients in Denmark and may also be a contact to suss out where these things other than hospitals are.

NHC = _http://www.nationalhyperbariccentre.com/medical.cfm?pageType=Medical&Story=Medical

Based on the remarkable results for Artreides , hope you can find something close to home soon; good luck to you!

 

[Guardian]

Unfortunately, you're correct...I asked them.

Healing Dives Portable Hyperbaric Chambers

We only offer financing and leasing in the U.S., however, you might be able to get a loan from your bank or use a credit card to purchase a chamber.

I got another rather interesting message from that company...at 6:15 am on a Sunday?

6:15am
Healing Dives Portable Hyperbaric Chambers

What condition will you be using the chamber to treat?

 

[The rabbit]

Specialist was seen,not at all special in anyway.Two minutes of conversation ,trousers off , quick look, trousers on and that was that.I told him of Dr. Guillem ,showed him the letter Dr Guillem had written for my GP.He photocopied it and then told me he would now refer me to the dermatologi department in Århus. How long all this takes I do not know.The positive thing that may come from this is that Århus department has the Hyperbaric chambers.So thats were I am up to now.

Oh, started to use a paste which i made from DMSO and kelp three days back , this is alleviating some of the pain.

 

[Chu]

Just an update here, and good news:

Atreides' wounds are getting smaller and smaller, and soon he will be free of bandages! The staff at the hyperbaric chamber center is amazed at the way and the speed at which he is healing. They told us that for wounds this magnitude, it would take a normal person 6 months to heal without the chamber, and about 4 with the chamber. But he is almost healed up after 2 months. :D

They are so anal about "standard diets" that in order to be left alone, we claim he is following their dietary advice, which is BS. But we do wonder if the keto diet isn't contibuting big time to this speedy recovery. He also hasn't had any recurrence (touch wood), even though it seems to be pretty common after a surgery for others areas around the wounds to act up a bit. And he used to have a tooth infection, but its all gone! The dentist confirmed that the hyperbaric chamber is likely to be the reason (so, if anyone here has some recurrent infection, the hyperbaric chamber is highly recommended!)

They also claim that smoking right after going in the chamber counteracts all effects, and no matter how many times we have pointed out the falseness of that statement, they keep repeting like robots that we are wrong. Well, given that he smokes every time after the chamber, he should have healed in one week if he had forgone the "vice" ! Yeah, yeah...

Another good piece of news is that a few days ago Hélène from Solidarité Verneuil told me that recently a young woman had contacted her, and is now fortunately in touch with Dr. Guillem and scheduled for surgery. And she found their site and the doctor's contact info in our forum! I have no idea who this person is, but she is French, and was looking for information in English since she couldn't find much in her mother tongue. So, this thread has helped another person. :D

From what Hélène said, even though the official figure here in France for HS is 4% of the population, they are getting so many calls that she thinks it's probably much higher. It wouldn't be surprising, given how painful and hard it is to talk with anybody about it. Her team is doing a great job, and it's heartwarming to see that some people care. They recently won a national award in recognition for their patient care program, and will be hiring somebody because they have too much work (they are all volunteers).

Finally, talking to several people with HS, it seems that most of them are aware of a certain sensitivity to gluten and dairy. Some eat lots of meat and fat, and recommend it. Some have seen positive effects. Even if it is just a "mechanical" issue, and not a "disease", I'm sure that having a good diet can only help!

 

[Voyageur]

But he is almost healed up after 2 months. :D

Fantastic

Very amusing about diet and smoking; telling them what they want to hear.

Way to go Atreides'!

 

[LQB]

Good deal!! - and great to hear.

 

[Jacques]

But he is almost healed up after 2 months. :D

Fantastic

Very amusing about diet and smoking; telling them what they want to hear.

Way to go Atreides'!

What a great news.

I am so happy for you Atreides and all your loving ones.

 

[The rabbit]

I was in a meeting with a doctor today in Århus. Young , actually quite bright and friendly. This to determine what happens next in this so far continuous story.Well it has not gone exactly to my liking though I think there is room for negotiating. This is the place where it is determined if one should have an operation, and if so where it takes place. Denmark , France, or nowhere at all.

I showed him the wonderful letter from Doctor Guilem which he took time to read , at least I think he took it in, but he was not a surgeon.

We talked for some time , and we spoke of the different camps of thought regarding this condition. I did mention aquatic ape in there just to see how he would react to such a suggestion. It twoggled him slightly, but he bounced right back, pulled some kind of face and then he was back on track.

When I told him I basically ate only meat and explained why I do not touch gluten in any shape or form, he did listen.he did ask what a Paleo diet is and then answered his own question with "A cave man diet, is it"? Then of course I had to tell him that we have spent most of our existence in ice ages and our natural food was meat as there where not many carbs growing in the ice ages. Etc , etc , agriculture and its offspring has brought with it real starvation, diseases and so on. The young Doctor took in this also. He was asking about my intake of food at the time, I did not just break out into song.

The major points in brief are;
I was asked five questions and had to choose one of the following answers for each question. "Very much" "A lot" "Sometimes" "never" stupid me said "very much" for four of the questions , and "A lot for one of them" Nearly got top marks. "The desperately needs/wants an operation"

1) Would you say your sex life and quality of your interactions with your partner are effected by your condition.

Answer (a) tons (b) loads (c) now and again like (d)What?

I cant remember which one I answered "A lot" to instead of "Very much"

Outcome. No surgery, yet.They would like to poison me for three months on tetracilin and some gel, then I go back and answer the same questions. Is that weird or what?

During this meeting he also told me of a team of Doctors in Roskilde who where out to make a name for themselves in the world of H.S. I took this opportunity to inform him that Doctor Guilem had carried out hundreds of procedures in regards to this condition and was not just starting out. I also wondered if he knew anything really, as when I mentioned the two names I knew for this condition at the beginning he had never heard of either, though his Roskilde Doctors are working on this condition. Am I unduly worried here?

That is kind of it. The cowardice side of Patrick was slightly relieved that no surgery was given,hell who wants surgery? Well no one but those who need surgery. How big is your want? Surgery even if only for a few years , if we have a few years, would get me up and running so to speak, without pain. Versus daily inflammation to various degrees, always painful and working its way up to and, beyond words.

In my private life there is much going on. I am attempting to create time and space to work on a task/project or two.All the duties and chores which take up most of the time daily, still have to be done, but now in a way that is more relaxed and in the right time and measure. The chore is as wonderful as the task/project you want to work on.

I hope all are well.

 

[Alana]

I was in a meeting with a doctor today in Århus. Young , actually quite bright and friendly. This to determine what happens next in this so far continuous story.Well it has not gone exactly to my liking though I think there is room for negotiating. This is the place where it is determined if one should have an operation, and if so where it takes place. Denmark , France, or nowhere at all.

If I am understanding correctly, they have to give you the green light when to have the surgery, and then you can have it in France if you choose it, where they do the hyperbaric chamber treatments?

Outcome. No surgery, yet.They would like to poison me for three months on tetracilin and some gel, then I go back and answer the same questions. Is that weird or what?

I hope you get the green light for the surgery in 3 months, at least your pain then will be pain of healing. Whatever they ask you next time, check the severe symptoms! Doctors are such a pain sometimes.

 

[the_hammer]

If I am understanding correctly, they have to give you the green light when to have the surgery, and then you can have it in France if you choose it, where they do the hyperbaric chamber treatments?

Outcome. No surgery, yet.They would like to poison me for three months on tetracilin and some gel, then I go back and answer the same questions. Is that weird or what?

No unfortunately not Alana, if the green light is given, then at present it sounds like it would be in Denmark.The doctor spoke of exhausting all attempts at "controlling the condition" first.

Mod: fixed quotes

 

[Laura]

The doctor spoke of exhausting all attempts at "controlling the condition" first.

Not a surprise. As my grandmother always said, a smart man learns from his mistakes, a genius learns from the mistakes of others. Sounds like they have smart doctors in Denmark, but no geniuses.

 

[Mrs. Peel]

Outcome. No surgery, yet.They would like to poison me for three months on tetracilin and some gel, then I go back and answer the same questions. Is that weird or what?

Well, you don't actually have to take it do you? Just toss it in the trash and say you did! ;) or maybe take a couple right before you go back in case they do a test to see if it's in your blood.

 

[Guardian]

Outcome. No surgery, yet.They would like to poison me for three months on tetracilin and some gel, then I go back and answer the same questions. Is that weird or what?

If you're talking about "tetracycline" that's an antibiotic that will work to reduce the size of the boil fairly rapidly, but unfortunately, it's just a temporary fix. It will come back eventually.

 

[The rabbit]

Outcome. No surgery, yet.They would like to poison me for three months on tetracilin and some gel, then I go back and answer the same questions. Is that weird or what?

Well, you don't actually have to take it do you? Just toss it in the trash and say you did! ;) or maybe take a couple right before you go back in case they do a test to see if it's in your blood.

Yes I had thought of that, the three months wait was the indicator of how long I will now have to wait for another decision. In the meantime if I become acute then they will just take me in and attempt to cut me up again not knowing what they are really doing.

With what is already upon us I thought that standing up after healing with more strength would be the best case scenario for us up here in the north. I am working towards an outcome which hopefully may put me in a position to be able to determine my own path and be able to afford dental treatment on the Hammer´s teeth,while she still has healthy teeth. It all of course may fall on its behind,and I then will have no choice but to let this Danish medical dance play itself out. I will not be adding any medication to my system.

 

[The rabbit]

The doctor spoke of exhausting all attempts at "controlling the condition" first.

Not a surprise. As my grandmother always said, a smart man learns from his mistakes, a genius learns from the mistakes of others. Sounds like they have smart doctors in Denmark, but no geniuses.

Sorry this was actually me who posted this and not the Hammer. We have two main computers in the house.I had not realised it was the Hammer who was signed in and not me.

He was wowed about DMSO,when he saw that I had written it down as something which sometimes is able to help. Melatonin brought the question "Don´t you have a lot of strange dreams"?