Hidradenitis Suppurativa

[The rabbit]

A number of years back I had a number of operations on abscesses in my groin area which had been causing me great pain and at times leaving me unable to work.
The operation left me with awful scarring , but for a while the excruciating pain was gone as where the abscesses. Alas the operation was not a cure and in the last year the problem has returned , though at this point I can still walk and move about.

I went to see my doctor who prescribed a course of antibiotics which alleviated the situation slightly but no cure.So when i went back for another course they refused and could think of only sending me for another series of operations. I told him that I really did not want to go that avenue if it could be helped.

A nurse at the doctors surgery disapeared for a while and came back and said that my condition may be Hidradenitis Suppurativa which operations could not cure and has sent a letter to a specialist Dermatologist who may be able to help. Waiting list though as he works in other fields also.

Anyways I had forgotten the name that she said my condition may be , and only tonight found it in an internet search.

I have come across a site here http://www.earthclinic.com/CURES/hidradenitis_suppurativa2.html which discusses possible ways to alleviate this painful condition and from what im reading it sounds like it "is" the problem that I have.

It strange when you come across a site where people talk about how it is to suffer from a problem that one has ones self. A group of people understanding the pain each is going through.

The thing is Diet is very important and if the information that is being uncovered here regarding gluten , dairy and other poisons had not have come into being I do think that I would be in a worse situation than I am in at present.

I shall take a closer look at some of the remedies that is suggested there when I get up later on today , and maybe try some of their suggestions.

If any one knows of this condition and has any advice information then please let me know. Maybe Psyche has heard of it.Anyways it is a kind of relief to know that others are trying to do something about it and have written in their forum giving others the possibility to try and get some relief from this.

But most of all now I have a name for it.

 

[Gaby]

If any one knows of this condition and has any advice information then please let me know. Maybe Psyche has heard of it.Anyways it is a kind of relief to know that others are trying to do something about it and have written in their forum giving others the possibility to try and get some relief from this.

But most of all now I have a name for it.

Have you tried searching "boils", they're under the same family and people have written much more about boils and what worked for them at the earthclinic.com but also elsewhere in the web.

 

[Laura]

If any one knows of this condition and has any advice information then please let me know. Maybe Psyche has heard of it.Anyways it is a kind of relief to know that others are trying to do something about it and have written in their forum giving others the possibility to try and get some relief from this.

But most of all now I have a name for it.

Have you tried searching "boils", they're under the same family and people have written much more about boils and what worked for them at the earthclinic.com but also elsewhere in the web.

Yes. We have a close associate who has a similar problem and has had surgeries and it has been an ongoing problem. With this particular individual, the boil issues seems to be an autoimmune problem and diet has a lot of impact on it. Also, IBS is involved and that is closely related to adrenal fatigue which means that it is very important to sleep the right number of hours on the right schedule. That is, be in bed and asleep before 11:30 p.m. and sleep through the night.

Uber-strict observance of the no-gluten and no-dairy rules have helped this individual along with consistent supplements, especially 5-htp which help to balance the sleep cycles.

Read "Treating and Beating CFS and Fibromyalgia" for some good guidance.

 

[Gimpy]

If any one knows of this condition and has any advice information then please let me know. Maybe Psyche has heard of it.Anyways it is a kind of relief to know that others are trying to do something about it and have written in their forum giving others the possibility to try and get some relief from this.

My Hubby has this condition. Stress is the number one problem for him as far as break outs. Binding clothing and hot, humid weather also makes things worse.


Massage helped him a lot by circulating lymph, but so far he refuses to join me in the diet. Exercise, like walking the dog, also helps a lot...but nothing 'hard' like aerobic type stuff.

If you're all ready doing the diet, all I can say is to set aside time each day to decompress from stress, do EE, and if you can get a massage once a month. As Laura said, sleep is really important.


Hang in there! I do know what you're going through. Hubby is suffering a break out from stress right now, and he won't quit eating pizza....I have to bite my lip and step back or I'll be tempted to smack the box upside his head.

 

[Laura]

Yes, a lymph drainage massage would be excellent!

 

[Gimpy]

Ok, went back and talked to Hubby again. He says its important that no matter how much you itch, that you not touch any inflamed or areas that feel like they are going to erupt.

I know that's difficult, it is for him too.

He relies on antibiotic ointment and using Hibiclens to keep the affected areas clean. In the past, when he was not drinking coffee and had a better diet, he didn't have break outs as bad. That coincided with very lean economic times for us, and I doubt he'll get rid of his beloved coffee again.

When he's finally tired of suffering, he'll figure it out. I made him buckwheat muffins the other night, and despite his claims to refuse to eat as I do, he ate those right up.

He even asked for more of them.



Don't give up. Once you have enough information, it does get better.

 

[The rabbit]

First of all thanks for responses

Have you tried searching "boils", they're under the same family and people have written much more about boils and what worked for them at the earthclinic.com but also elsewhere in the web.

Had a quick look earlier on, tumeric is highly recommended , will may be give it a try , though some say nay it doth not work.

Also, IBS is involved and that is closely related to adrenal fatigue which means that it is very important to sleep the right number of hours on the right schedule. That is, be in bed and asleep before 11:30 p.m. and sleep through the night.

Uber-strict observance of the no-gluten and no-dairy rules have helped this individual along with consistent supplements, especially 5-htp which help to balance the sleep cycles.

Read "Treating and Beating CFS and Fibromyalgia" for some good guidance.

Got it . Thanks , was up untill after 03:00 last night , due to the pain and reading the site i had been reading. Wont be many of them. 5-htp i will order from ebay or somewhere. Gluten free and dairy free , have observed it quite strictly but slipped quite recently adding a little butter here and there. And I ate a cake or two along the way

"Treating and Beating CFS and Fibromyalgia" I will read as soon as possible. Thanks.

Hang in there! I do know what you're going through. Hubby is suffering a break out from stress right now, and he won't quit eating pizza....I have to bite my lip and step back or I'll be tempted to smack the box upside his head.

Yes I have seen the Hammer biting her lip when I ate the cakes , and Its really cruel and selfish of me because she has to put up with the groans. So...NO MORE!

When he's finally tired of suffering, he'll figure it out. I made him buckwheat muffins the other night, and despite his claims to refuse to eat as I do, he ate those right up.

He even asked for more of them.



Don't give up. Once you have enough information, it does get better.

Thanks Gimpy , it´s amazing how we continue to do those things that we know does us harm. I´ve still not had a buckwheat muffin ever , looking forward to getting around to making some

 

[Laura]

Just remember that it can take up to 6 months to clear the damage of gluten and dairy, so if you cheat, that starts you at the beginning of a 6 month count all over again. Isn't worth it.

If you pay attention, I think you will notice that your symptoms and outbreaks are a lot worse when you don't sleep properly. So that is super important.

Another thing that I think has helped our acquaintance is using doxycycline mixed in DMSO applied to the skin.

 

[jsf]

Another thing that I think has helped our acquaintance is using doxycycline mixed in DMSO applied to the skin.

Someone on facebook said the same :

Angela Frey
since I have started using it I have seen a drastic reduction in my inflammations, supperations and even the terrible scars seem less obvious! I have been using it for 5 days... I wore undies and normal pants today for the first time in 5 months!
29 février 2012, 16:28 · J’aime · 2

_https://www.facebook.com/hidradenitis/posts/10150596714967476

Maybe some toxin could trigger an inflammatory response in these apocrine sweat glands.
Something in the water ? in the clothes ? deodorant ?

Triggering factors
There are a number of triggering factors that should be taken into consideration.

Obesity[14] is an exacerbating rather than a triggering factor,[15] through mechanical irritation, occlusion, and maceration.
Tight clothing,[14] and clothing made of heavy, non-breathable materials.
[16] Deodorants, depilation products, shaving of the affected area – their association with hidradenitis suppurativa is still an ongoing debate amongst researchers.[17]
Drugs, in particular oral contraceptives[18] (i.e., oral hormonal birth control; "the pill") and lithium.[19]
Hot and especially humid climates[20] (dry/arid climates often cause remission).

Maybe it would be safe to check and eliminate every possible factor before it gets too bad.

 

[Josi]

Here was a really interesting podcast from Underground Wellness: _http://undergroundwellness.com/podcasts/275-the-hidden-plague/

The Hidden Plague

The Hidden Plague by Tara Grant:_http://www.amazon.com/The-Hidden-Plague-Hidradenitis-Suppurativa/dp/1939563011

Guest: Tara Grant

Tara Grant — author of The Hidden Plague — stops by the show to discuss a frustrating, skin-related autoimmune condition that no one is talking about — Hidradenitis Suppurativa (HS).

Topics will include:

* Why it took Tara 15 years to get a proper HS diagnosis.
* What happens when your immune system attacks your hair follicles.
* What Splenda does to your gut bacteria…and your weight!
* Commonly consumed foods that poke holes in your gut and actually let undigested foods, bacteria, and toxins piggyback their way into your bloodstream. Not good!

 

[Chu]

Thanks!! Atreides and I listened to the podcast yesterday, and found it quite interesting. Yeah, not many things were new, but it was heartening to see that she's been in remission for years, and how she managed to do that. Waiting for the book now...

 

[Yas]

Yes, thank you! Very interesting!

I had come across her story some time ago in Robb Wolf's website:

http://robbwolf.com/2012/04/09/putting-hidradenitis-suppurativa-remission-paleo/

Here's her blog where you can find a whole section dedicated to HS: _http://primalgirl.com/category/hidradenitis-suppurativa-3/

Her story:

_http://primalgirl.com/2012/03/05/primalgirl-opens-up-hidradenitis-suppurativa-part-i/
_http://primalgirl.com/2012/03/10/primalgirl-opens-up-hidradenitis-suppurativa-part-2/

I went to Sao Paulo recently for an appointment with a doctor who works with HS for about 40 years now, he says 50% of his patients are HS sufferers, so the disease is quite common but, as we know, not many people know about it.

A summary of what he told me would be:

- There's no known cure.
- He's thinks it's likely to be an autoimmune disease.
- Antibiotics are useless: He ran tests on the actual tissue from the lessions and he found that they're sterile, meaning that there's not bacterial infections causing them. Sometimes it can get infected, but that's not the norm. Taking antibiotics doesn't ameliorate the problem.
- It has a "cycle": He said it usually develops with a cycle. The abscess appear, it grows for 7 to 14 days, then it drains by it self. Sometimes when there's too much pain, an incision could be made to drain the abscess, but that's pretty much what can be done.
- He "treats" the disease with a surgery when abscesses appear more than 5 times in the same place or around the same place, meaning that there's a fistula formed and that needs to be extracted.
- He normally has a good result with surgery but he also has some cases where the issue keeps on being recurrent and the abscesses appear in many different areas of the body.

He's name is Dr. Ival Peres, in case someone around the area wants to find him. He seemed to be a very nice and open person, with many good comments and reports about him.

I'll be getting a surgery with him in December or January, so I'll keep you updated about how it goes and all that.

My idea so far is that there is a genetic predisposition, triggered by diet, stress, and probably other factors, so... once the fistula is formed, one has to take it out with surgery, but then, diet and stress should be taken care of so that no new abscesses/fistulas are formed. OSIT

Of course, there's still so much to find out about this disease...

I share this fwiw...

 

[Chu]

Thanks for sharing, Yas. I'm glad that you have found a doctor closer to your place, who seems to know what he's doing. And yes, from what I've seen, it seems to be true that it's autoimmune. Surgery is needed sometimes, but the main thing is, I would think, to manage stress levels (citokines) and not triggering insulin.

 

[Yas]

Here's an update of my HS situation...

It's been a month since the flare ups are like in a nonstop coming and going. It seems that this particular area is like a volcano that builds up in pressure and then releases, just to build up again in few days. I suppose that's because a fistula has been formed and it's just a constant inflammation and I suppose that, once you get there, diet, stress management and all that won't work... I need to take this tissue out.

I have to wait until December for the surgery, so I've been doing things to keep it down that seem to make the issue a bit less uncomfortable. Once I feel a boil starting to form, I clean the area with hydrogen peroxide, just to make sure there are no skin bacteria that can penetrate the wound and infect it. I use a DSMO cream most of the time, and Osmogel when it's really bad. DMSO seems to help the draining process. I also take some Zinc which really shows to be useful to reduce inflammation, but I only take it once or twice at night time because I normally feel a bit sick after it.

What happens is that it gets inflammed and after some hours or a day it "explodes" (drains) and that alleviates the inflammation (and pain). It's not ideal, but what I've noticed in my first big flare up that got me to the hospital, was that it got inflammed but it didn't drain for days and that caused a lot of pain, so it's at least better that it drains after some hours.

Another thing that I've noticed and that you've mentioned already (and the Brazilian doctor too) is that tight clothes really make things worse. The moment that I use any thing that is the least tight, it gets inflammed. Also, because of the area, sitting down for a long time in a position that puts pressure on it doesn't help.

I'll buy the kindle version of The Hidden Epidemic today just to make sure I'm following the guidelines to keep it controlled... Fortunately I've only got one wound that is in this state, and I haven't had boils in other areas since that last big flare up last year.

The thing is that the doctor said he only takes out the part that gets inflammed constantly, and I once had a boil in the other side of the groin area too, so I'm afraid that this one also starts flaring up after the surgery. I think that Chu mentioned to me that Dr. Guillem said he does something to find out about all the apocrine glands in the area that are being problematic in order to extract all of them. I would like to know more details about that so that I can share it with the doctor in Brazil.

Fortunately, I've only got this boil and I understand how horrible it might be for people who have several of them and in areas which are even more uncomfortable. :/ And this thing seems to be so common that it's really amazing that such few people know about it.

 

[Chu]

Very sorry to hear about this, Yas! Hang in there. I think you are doing all you can. Cold baths may also help. Keeping the boils drained is important too, as you say, especially the osmogel because it pulls stuff out, instead of pulling it further into the body (I don't know whether DMSO does that or not). Guillem also recommends never squeezing the boils (that can cause more pressure on one side and create a fistula). Only draining them out.

Concerning the fistulas, what Guillem actually does is, once the patient is under anesthesia, he injects a contrast solution right inside the boil, and watches to see if it spreads around in tunnels (that would be the fistulas). I think it's important to say this to your doctor. Atreides actually had a boil removed "completely", and a month later it flared up again. When we found Guillem, he had to cut that area again, and get to the fistulas, so that it would take care of the entire network of risky areas.

Supervolcano describes it pretty well, yes.

Oh, even if the surgery is only in December, make sure you have pictures. I don't know whether your doctor will do it or not, but Guillem uses the pictures as a reference and, if there are flare ups in the same area, and when the patient goes see him there is no inflammation, he stills injects the contrast solution there to check that it's not just "boiling inside". Usually he will do that if the patient has had a boil in the same area twice (once is not enough to worry, he says).