Any other Hidradenitis Suppurativa sufferers out there?
Replies
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Thanks to my dad, I have it to and it can be painful at times,like today. Mine isn't as bad as it could be but it is something I will have to live with for the rest of my life and hope that I can control it with a healthy life style. Anyone need someone to talk to or just need a new friend add me and let me know.0
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I have been suffering from HS for the last 10 years and its been a nightmare.
I've had surgery, been on long term antibiotics, had them drained and packed and nothing has work.
A couple of weeks ago I had had enough and did some research on some natural remedies. And l was amazed at what I had found.
I now take Turmeric tablets daily, I also started taking Olive Leaf Extract. They started working immediately. With a week the ones I had have started to dry up on there own. They are not painful at all and the healing is amazing. I have also cut out starchy foods from my diet, for me that's white bread and potatoes. I have noticed a major difference in the past 2 weeks. I will never go on antibiotics again. They have reeked havoc on my body. I will try and fight this the natural way.
Give Turmeric and Olive Leaf Extract a go my fellow HS sufferers, it won't do you any harm.0 -
This is crazy I was thinking of putting up a topic yet I had No idea how to post one. But I also wanted to know that I wasn't alone on mfp with this disease. Ive had it since I was 11 got diagnosed when I was 17 at ther e.r. when I had to get one drained the size of a golf ball. The reason I decided to lose weight is to help this disease. I do find it hard to work out though. Iam in stage 3 so I actually have some that will not heal any longer. I get about 5 at the time. As i write this i Have 2 on my left arm, 1 on my right arm, 1 the size of olive on my left leg and another on the right. and one on the back of my neck. o and under my belly flap I have 3 that are draining. I actually did start getting them on my breast, neck, lower stomach and under my belly flap. But since losing weight i have not gotten them on my neck or breast or lower stomach. Its hard to live with this disease and put a smile on your face. Iam only 22 and I feel like I have not enjoyed my life to the fullest. Any support with this disease or even weight loss is greatly apreciated.0
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OK, I think I managed to get a friend request out to everyone. I might have missed someone. If I did, please message me!
I wanted to say one other thing that's really, really exciting to me! I met someone from NORD (National Organization of Rare Diseases) who said they have a VERY promising treatment for HS that they are starting clinical trials on now. They have done trials in Europe with very good success. The down side is that it is a long treatment process, but the upside is the disease goes into a very long/potentially permanent remission.
It's similar to chemo. It's a regular (not sure if daily) procedure where some concoction of medicine is fed through an IV. The whole process takes about 6 months, but then you should be in remission! I'd be willing to give up 6 months of my life to this treatment if it meant my quality of life would improve and I would never need surgery
I can get more details for you all. I have her contact information plus more information on my computer at home. If any of you are in the DC area (or willing to travel), I believe the trials are taking place in Bethesda, MD (just outside of DC).
^_________________________________________________________________________________________________^
Do you still have any info on the trials?? Are they still going on?? I live in Maryland and would definitely be interested in being a guinea pig for relief for this study!0 -
I also suffer from HS, I had my first outbreak when I was 15 in my groin, I was told they were swollen lymph nodes and was prescribed antibiotics, when I was 23 I had these repeat areas under my arms in my pits under both arms, usually when one arm is infected the other is in good standing. I have had 3 incisions where they drained 3 different areas and packed them all because I was unable to work due to the size and tenderness of the swollen areas. Ihave been admitted to the ER several times just for these areas under my arms, as for the ones on my crotch, they do not bother me like the ones under my arms but they dont heal either and my panties get stuck to the wounds which causes them to bleed when I get undressed. I had surgery on both of my arms to remove the infected areas on September 25 2012, needless to say I have swollen areas around the areas that were cut out, my wounds that were cut have not healed in a months time and they are draining because my surgeon left them open, so not only do i have new swollen areas my arm pits are pitted in various places. I did find that before my surgery Hibiclense would keep them calm for a certain amount of time. I have also been reading about Zinc Glluconate Supplements and birth control can also help. I wouldnt suggest surgery because, you cant go get them cut out everytime they occur. So just like the rest of you, I too am at a loss and wodering what kind of quality of life were going to have when we can barely use our arms. Ill let you know how weight loss and the Zinc works!0
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I've been diagnosed with HS for nine years. I went on the paleo diet 30 days ago. I also eliminated nightshades. I saw a big imporvement. I have found certain vegetables triggered a flare up. ( for me I have found that tomatoes and jalepenos cause me to break out.) I am still in the process of adding foods back to my diet to see if they also have an affect on my body. Here is the article that I read.
http://robbwolf.com/2012/04/09/putting-hidradenitis-suppurativa-remission-paleo/0 -
I had it for 15 years. Last year it was a constant flare up and copvered about half the surface area of my left armpit. No anti biotics helped and I ended up having surgery to remove tissue. I was told it is important to control blood sugar as there is a chance it could return. It is a horrible and very embarrassing condition. I have had it in my other armpit, I have the big lumpy scars but it hasn't flared up for a couple of years.0
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HS Treatment
Hidradenitis Suppurativa (HS) is an autoimmune disease and is due to high levels of Antibodies to Gluten. The Gluten connection is not well known in the Medical community – doctors are not sure about it yet. This gluten problem became evident because some HS sufferers have gone on a Gluten-Free diet (GF diet )and their symptoms became less intense or removed.
In all autoimmune diseases, there are high production of Antibodies .
Oral Tolerance is the Medical Discovery we use to fix HS.
Oral Tolerance" is the correct way and is now being used to treat HS.
Oral Tolerance is the one of the Great Discoveries of Modern Medicine because it lowers production of Antibodies - Immunoglobin G, Immunoglobin M and Immunoglobin E.
Proof: Autoimmune Inc. is a company that was established from the Success in Animal trials using Oral Tolerance for various immune diseases – arthritis, diabetes, experimental MS and other illnesses. That is correct – there was success in animal trials, but it was all premature because there was NO success with human trials.
The company dissolved because it missed some important detail that brought success in their animal tests. This company was just one step to reaching success but could move no further and does not exist today.
The success in animals was because they used 6 months old mice and 9 months old rats – these animals were comparatively Fresh & produce good amounts of a blood factor. In most humans with immune problems and immune disease, there are small amounts of this factor-but not enough to heal.
For more info on Oral Tolerance, please view:
http://suite101.com/article/oral-tolerance-therapy-a8796
Oral Tolerance depends on the T suppressor cell( a blood cell)- which functions to lower Antibodies - Immunoglobin G, Immunoglobin M and Immunoglobin E - associated with immune problems and can fix and cure HS and other immune diseases.
But the important thing here is – if we duplicate all the Factors in the animal trials to human trials, we will succeed and fix Hidradenitis Suppurativa.
The studies by Dr. Polly Matzinger shows how to accomplish this: The T cell needs 2 factors or signals for full activation.
1.) a peptide similar to gluten – we can not use gluten because it is the cause of HS – the peptide primes or makes ready the T cell. But without the 2nd signal the T cell remains in anergy( no activity).
2.) the Second signal - is B7 – other names for this are CD80 and CD86 also known as B7-1 and B7-2 ; either one is enough to make the T cell go thru the changes that makes it a fully activated cell.
Matzinger's research is called Danger Theory. It is called Danger because the Second signal can be induced in humans or animals by Dangerous methods-
Vaccines , Toxoids , Products and by products of Bacteria , Viruses, Mycoplasmas and other contageous
and virulent Disease causing Micro-organisms. These drugs can cause high fevers, Toxic reactions and Death and are not acceptable for human use.
You may view Matzinger's Danger Theory at
http://www.omnilogos.com/2011/11/26/immunological-danger-signals/
However, there are other ways which will produce that necessary 2nd signal and NO DANGER.
The second signal is a blood factor & can be induced by HERBS.
Two herbs that induce Second Signal -CD80 & CD86 production are:
1.) Agaricus bisporus - is the white Button mushroom or champignon mushroom found in most U.S. and Canadian supermarkets.
see article http://www.ncbi.nlm.nih.gov/pubmed/18287364
2.) Goji berry known as Lycium barbarum - juice and extracts induces CD80- available from most Food supplement stores & the internet
See article http://www.ncbi.nlm.nih.gov/pubmed/19170138
This treatment is simple & not complicated - it contains a peptide (part of protein) and herbs and that's all.
A course is 26 days.
For Mild cases - 3 to 6 courses.
For Moderate cases - 7 to 9 courses.
For Severe cases - 10 to 12 courses.
However, many HS sufferers are not yet convinced about the relationship between HS and Gluten.
If you don't believe that Hidradenitis suppurativa is caused by gluten, kindly read this next info carefully.
WE have researched Hidradenitis suppurativa – a Skin Disease - for some time now and we realized not just HS but a lot of Skin Diseases are also linked and caused by Gluten.
We have listed several diseases and have found the causes point to Gluten and gluten Intolerance:
1. Dermatitis herpetiformis (DH), or Duhring's disease 2. Lichen Simplex Chronicus
3. Lichen Sclerosis
4. Prurigo Nodularis
5. Lichen Planus
6. Grover's Disease also known as Acantholytic Dermatosis
7. some Morphea cases
8. some Scleroderma cases
If you do a research and even using the internet to get this info, you will find that this list of diseases - ALL 8 of them affect the SKIN &
have been connected with Gluten and Gluten Intolerance and alleviated by GF Diet.
I am trying to prove here that when you realize that gluten is the Source of these other SKIN Diseases, then you should decide for yourself if from these list, there is a strong possibility that Gluten is also the Cause of HIdradenitis Suppurativa.
One more proof: We are treating other illnesses successfully - Diabetes 2 and Celiac Disease. As pointed out Oral Tolerance
works lowering Antibodes and our success with these has lead us to treat other diseases including HS.
Our website is
www.naturopathichealing.net
Questions, comments or inquiries? kindly contact us
via himmerland2000@yahoo.ca
Lux Health Resources0 -
Wow! So glad I came across this! I have suffered from HS for over 15 years and 2 weeks ago eliminated gluten from my diet as an experiement to see if my symptoms would improve. I figured that gluten causes all types of autoimmune diseases, maybe it's behimd HS. I haven't had any lesions while I've been gluten free. I'm so glad that I found your post because I can find nobody who will agree that maybe gluten is the culprit. I try to suggest it to other HS sufferers, but they seem to believe their best bet is antibiotics and creams. HS is not a skin issue. The root is an immune issue. Thanks for posting this!0
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I have had this for 20 years. I was first diagnosis when I was 19 and it almost killed me. I've tried surgeries. They work for a little while. I am currently searching a dermatologist who may have some insight. I'm trying the no night shades. We'll see what happens.0
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Hey everyone who has responded here since the last time I was here... come on over to our support group! You should be able to just search for Hidradenitis (I think I left out the suppurativa). Come and join us. We're a small group, but there's some decent discussions.0
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I think i may have this also, but the flare ups are only a couple a year or so- not all that often. When i used to wear jeans I got flare ups much more often, Im not sure if there is a relation to wearing jeans but i dont wear them anymore and its a lot better. Always around the pants line/top of thighs.0
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Yeah I am not alone on here. I have had this condition since I was 11 years old, I have tried every dietary exclusion possible with no positive results. I have had multiple surgeries along my axilla but they continue to return, They have also gotten as large as a softball. I have found every method of self surgery imaginable to extract the nasty bloody pus filled sacs only to have them return. I also get them along my bra line and groin line which at times makes it impossible to even sit. I may next attempt the tumeric and zinc. I have done month after month of prescribed antibiotics year after year and the may lessen but return quickly. My scarring under my arms and under my abdominal flap are horrendous. Even if I lose all the weight a bikin is not in my future.. My son has also unfortunately inherited this condition his dermatologist says the new trial laser treatments are promising.0
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Okay, so we have tried many things and i just found our newest option. Nightshades...removing all from our diets for at least 30 days to see if any changes. We are in Canada and doctors here know very little about it. I have learnt almost all I know by researching it myself. Good luck to you all and make sure you are bathing daily...baths rather then showers so not to dry out your skin is best. Hot compresses when needed to force them to drain rather then tunnel. Any Q's, don't be afraid to message me and I will help you find any answers I can't answer myself.0
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Things that can help at least a little bit are keeping cool and clean. Reduce stress, sugar and caffeine intake as well as smoking are things that can bring on flare ups. Our next challenge...cutting out potatoes
worth a try. Anything is worth a try. Drain any and all as often as you can. I'm tired at the moment, but as I think of anything helpful I will post it Remember, hiding them just makes them grow bigger and spread further if you can't get them under control then get them removed. The deeper they get the harder it is to get the entire tunnel! 0 -
Well just a brief history, Mark is 38 and has been suffering since childhood/youth. He was only told what it was last year!!!! He's been hiding it from everyone. His mom didn't even know until I (Shelly) researched it and sent her info on it. When sent to a surgeon, I get to explain it to the surgeon. When we got to emergency rooms monthly. I get to explain it to the doctors. They all assume it's just one abscess. It is hereditary as his mom and aunt have flare ups from time to time and his grandfather, their father had them. He is that fun stage where they are always there and they are draining 24/7. Groin, underarms, back, legs, inside elbow (just got cut out 2 weeks ago), tailbone, backside....well anywhere he sweats is where they are and have been for years. He is on antibiotics daily and those just keep them calmer at times. I can tell if he misses his medication and then the next week we're back at the hospital getting sliced open and local doesn't numb it since it's so full of puss so he has to feel it all. Last time he had one behind another and doctor had to cut through the top to get the next and get his fingers right in there while he could feel it. Then it's packed for weeks to drain completely and that was a few months ago and now...it's back and we're waiting till it gets painful again so they'll make him sit in the waiting room for hours again before they cut it open again. His surgeon keeps saying...oh it'll calm down and go away on it's own...we don't like her much and going for a new one this week!0
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it sounds the same, but there are different stages etc.0
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Just want to say that I am so happy that I found this website and post ! I suffer from this disease and have tried everything without any results . Its nice to openly say that I have this to people without having to hide or be embarrassed about it. Mine started after the birth of my daughter almost 7 years ago. When I first got it , it was only one bump under my arm , then it quickly progressed to more and then moved to other parts of my body . My husband is so supportive of me and reminds me I am beautiful and he does his best to make me feel that way . But im sure most of you agree that when you look in the mirror and see scars on intimate parts of your body it is hard to feel beautiful. I am always looking for ways to at least tame the condition and if i am lucky enough to find something that works for me , i will be sure to share with you all !!0
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I am a little older than you; however, I had my first one around your age. I never seemed to get more than one at a time over the years. In 1998 I had to do a year of chemotherapy and they stopped all together. I got up the nerve to say something to a dermatalogist about it in 2001 and he gave me antibiotics. Needless to say, that's not the answer either. Fast forward to now, I am in my mid forties and have started developing them under my breast. At a recent exam with my OB/GYN, (I was breaking out everywhere) he noticed them. He mentioned Hidradenitis Suppurativa. Interestingly, he compared it to Pemphigus Vulgarus, which my sister was recently diagnosed with. Both are immune deficiency disorders. I have been taking the Zinc Gluconate for about two weeks. No new ones have developed. I am so excited to think this could be the answer. My only problem, I seem to get a little nauseous when taking them. I am taking 50 mg tablets. I think I will just keep it at one a day for a while.:flowerforyou:0
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My Mom started popping boils, around 8-10 years of age! One time, she had my Dad pop one, & I was soooo embarrassed, & I think two of my brothers, were in their room! I would get them, about every six months, or so....blackhead type ones, all in between my legs! I had a bad one, during my pregnancy, in 1987! I had a few lanced" after that!
the worst started, around 2001! I was working in a hospital, but I know, that's not the cause! Since then, I no longer work there, & I've had the worst flare ups, in my Life! Last year, 2012, I spent all Summer, most of Fall, & probably Winter, going to my Doctor, every other Day!
It's lessened, but I still get BAD; OUTBREAKS!
I've been using Antibiotics, Antidepressants,, a Walgreens Antiseptic Skin Cleanser, that WORKS VERY WELL!!; & Clindamycine Gel!
2-3 showers a day!
Popping them on a Daily Basis!
I am now looking for Trigger Food Lists, Healthy Foods for HS, etc....0 -
Katatak, may you friend request me?
Phyllis @};~0 -
Lynda, how many 50 Mg TABS, do you usually take, a day?
Phyllis @};~0 -
To whom it may concern, please do not "blame" Your Dad! I just lost my Dad, in February, he we my closest relative, @ the time!
Revert your anger, toward the disease, not a human being, with such a complicating disease!0 -
I have this too! I think i got this when I was about 18 yrs old. I was not overweight or anything. my first one was on my left near my groin area. and now they have spread eveywhere. I had a cherry sized one on my bum, which made me nearly pass out when it was drained. I have them on my bum, groin, breasts, arm pits. It's sooo embarrassing and most of sooo painful. I haven't been able to try anything to help it go into reimssion. although when I was pregnant with both of my kids i never got 1 flare up anywhere at all or even close to one. I wonder what hormone was preventing it???!!! There is an HS support group. http://www.mdjunction.com/hidradenitis-suppurativa they are sooo helpful and soooo nice!0
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I have it. I was diagnosed about 15 years ago.0
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I've had it since 1997 but of course like most was misdiagnosed year after year... until 2010 when I started doing my own research and found a dermo. that was educated on HS. Walked in and told him what I thought i had and the stage... he confirmed and now I am on my new journey to reduce the flair up's and lose weight which is a catch 22 in itself. I miss the joys of be about to wear strapless dresses or tank tops! I refuse to go under the knife to remove anything, and my Dermo does not even recommend I&D of the boils when they appear.
I wish more people would take about it or that it would be something that is voiced openly on the media! I wonder how many others are out there suffering and not really know why....0 -
I have no anger towards my dad. All I was trying to say is that I inherited this disease through his side of the family.
Sorry for your loss.0 -
have it myself... have had surgery to remove infected skin...it suxs but can't let it stop me0
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Definitely would be very interested. I've had HS for 5 years, currently being diagnosed with it. I'm stage 1 and am hoping to stay that way. Am attempting to cut out nightshades at the moment, will tell you how it goes.0
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My adult son has recently been diagnosed with this. He is trying the Zinc and to go on a gluten free diet. I will tell him about this group!0
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