Warning: This post is graphic and candid. If you are embarrassed by frank, honest discussions of human sexuality and the human body, then this post probably isn’t for you. If you want to learn more about a disease that is connected to Metabolic Syndrome, PCOS, Crohn’s Disease and Insulin Resistance but is rarely talked about, then read on.
This will be a two-part post. In Part One, I will be dealing with what Hidradenitis Suppurativa (HS) is and giving you some background into the disease and the psyche of its sufferers, as well as my story. In Part Two, I will discuss how I got my HS to go into remission. That’s right. My HS symptoms are gone. I have found out what triggers it in me and how to avoid flare-ups. The process is lengthy and requires some sacrifice, but if you suffer from HS I know you are willing to do ANYTHING to get rid of it. However, I encourage you to continue reading. Even if you don’t have this condition, I guarantee you know someone who does. Having some background into the disease can make all the difference in helping someone you love, since they probably won’t tell you how much they are suffering.
I’ve had a condition called Hidradenitis Suppurativa since right after puberty. I didn’t know what it was called for over 15 years and couldn’t find a doctor that even knew what it was until I did considerable research, found the name and told them what it was (my typical experience at the doctors, sadly enough.). I didn’t know anyone else that had it and was too embarrassed to “come out.” I felt alone and isolated. In order to find someone else with the condition, I first had to admit to them that I had it too. The disease caused me considerable pain – both physical and emotional. It damaged my self-esteem while I was growing up and limited the activities I was able to do. It has left me with scars. While the physical scars have faded and disappeared since going Primal, the emotional ones will always be there.
"The LORD will strike you with the same boils that plagued the Egyptians. He will strike you with hemorrhoids, sores, and itching that won't go away." ~ Deuteronomy 28:27
Having a skin condition that looks like herpes on crack in your private areas – your groin, pubic area, buttocks, under your arms or breasts or anywhere where there are hair follicles (so potentially your entire frackin’ body, really) – will definitely affect how you interact with other people. Imagine a girl just going through puberty, with all the stress and problems that puberty normally entails, and then add that frightening skin condition. Imagine going to a doctor to ask what it is and being told that it’s caused by bacteria and the ensuing shame that comes from being told “you aren’t doing a good enough job of cleaning yourself. Down there.” Imagine being told they don’t know what is wrong with you and that they don’t have a solution or treatment. Imagine that you are that girl and your friends are having a pool party. You really want to go but you are afraid that your bathing suit might ride up in the back and someone might see. You don’t go to that party, do you? You don’t change in the locker room either. You don’t go to sleepovers. You are afraid of being intimate. You think that people will think you are diseased, infected, contagious, damaged. Imagine the fragile self-esteem of a teenager who is afraid to reach out for help and who feels isolated and alone. I imagine this is how some gay teenagers must feel. It’s hard having a secret.
This was me. I am lucky that I had parents who constantly built me up in other ways, or God knows how I may have turned out. I’m also lucky I wasn’t raised in a strict religious family, or I may have thought this disease was inflicted upon me by God. After all, doesn’t God give people boils from time to time, for some sin or another? I’m also lucky I didn’t develop OCD about keeping myself clean. I didn’t even tell my supportive, loving family about my disease until I was in my 30s. It turns out they couldn’t have helped with the condition at the time anyway – the doctors couldn’t help. No one knows what causes this disease. No one in Western medicine has a clue. It wasn’t until I went Primal that I noticed an improvement in my condition and it took almost 3 years to fully understand what triggered the outbreaks and to completely avoid them. All the doctors I saw over the years didn’t understand the autoimmune response that HS seems to be. No one ever suggested perhaps it was something I was eating that was causing the outbreaks.
If you want to jump right to pictures, visit DermNet. Please be warned that the pictures are graphic and might contain the occasional penis, vagina, nipple or buttock. After all, these are the areas that are affected most often.
There’s a reason I needed to warn you before you looked at those pictures. They’re fairly horrific. The HS-USA website describes Hidradenitis Suppurativa as follows:
“Hidradenitis Suppurativa (HS), also known as ‘Acne Inversa’, is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact – armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage (suppuration — hence the name) involving significant scarring.
Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These ‘flare-ups’ are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.
Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites (deep tissue inflammation) are likely at these sites.
Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.
HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. There is no known cure nor any consistently effective treatment; what works for one person may not work for another. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon.
Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives. Estimates, however, indicate at least 1 million – potentially up to 12 million – Hidradenitis Suppurativa sufferers in the United States alone!”
If you don’t have this condition, thank whatever Gods you pray to. Then take a look around. I bet you know at least five – if not more – people that have this disease. I am the only person I know that is willing to talk about it, but once I opened up to a couple of friends, they told me that they had it too! They just didn’t know what it was called, what was causing it or how to get rid of it. My doctor referred me to a dermatologist, who told me there was no cure: “This is a life-long condition that you will have to live with. There is no cure. The only treatment that has been shown to be effective in any way is a daily course of antibiotics. You will, of course, have to take them every day for the rest of your life. Until menopause, anyway. The disease usually ‘burns itself out’ at menopause.” Well, that’s great news for women – perhaps we get a small respite from an incredibly horrible lifetime of pain later on in life, but what about the men? I haven’t read or heard anything else about HS “burning itself out” later in life in any books I’ve read, or even on the forums – just the occasion post-menopausal woman who seems to have the “situation under control.” There are all kinds of crazy theories and medieval-like home remedies out there on the Interwebs for HS (I tried them all), none of which work, some of which are downright dangerous. I’ll deal with these theories in my follow-up post.
My Story:
Right after I got my period at age 13, I started getting little pimples and bumps on my buttocks. They were very embarrassing, but I could clearly tell what they were and I wasn’t sexually active at all, so I knew I didn’t have an STD. I didn’t tell anyone about it, except for my best friend at the time. She also admitted that she got pimples on her bum too, so I thought that it was something fairly normal. About 2 years later I started getting the pimples in my groin area, except that they were more like boils than pimples. The ones on my bum changed too, they were bigger and much more painful. The boils would “erupt” and pus would come out, just like a pimple, except that blood would come out too. They would take weeks to come to a head and months to go away and eventually heal. It was fairly common for another boil to pop up in the same place before the previous one had even finished healing. Of course, they scarred. Badly. If the boil didn’t erupt, it would still take months to go away and would leave a dark spot. (On me, these eventually fade away – but it takes anywhere between 3 months to a year. If you are dark-skinned or scar very easily, you may carry the marks of HS for life.) Strangely, I have never had a single problem with my underarm area. This is usually the most common place for HS to occur but I’ve never had so much as an ingrown hair there.
I went to my doctor and she told me I was suffering from adult acne. Ha! She obviously didn’t have a clue. I didn’t mention it again to another doctor until I was about 30. I went in for my annual exam every year and no doctor ever said, “OMG, what is that?!” so I figured I didn’t have a reason to panic. I had a couple other girlfriends who had complained about boils in their groin area, so I still thought it was fairly normal. They went to their doctor, were given antibiotics and the boil cleared itself up. It’s been decades and I haven’t checked in with these friends to see if they had any more boils pop up over the years. I bet they did.
Over the years, my weight gain increased, as did my depression and other symptoms – including allergies and hair loss – and the HS got worse. I usually had about 3 boils at any given time. I started doing research and found a theory that tied HS to excessive sweating and bacteria. Since I was overweight, I did sweat more than the average person. I decided to shave off my pubic hair (against all the popular advice) to see if that would help and it actually did – I stopped getting flare ups in my groin but then got them worse on my behind. I also had a horrible problem with ingrown hairs, something I had never experienced before. I tried every remedy and cream on the market and nothing helped.
I now suspect that my ingrown hairs were caused by inflammation. Once I had my insulin and inflammation under control, I no longer got ingrown hairs. A short side note: I will also get ingrown hairs/breakouts in my nose if I eat something inflammatory, they are probably the most painful thing I’ve ever experienced. They are the first sign my body gives me to tell me I’m experiencing inflammation. The next is acne, canker sores and achy joints. At the time, I was also breaking out with cystic acne on my face. The pimples were almost identical to the ones on my bum and would take over a month to resolve. The dermatologist told me that you “can’t get HS on your face.” End of story – for her. It wasn’t for me. When I got my HS under control, the ingrown hairs AND the acne also went away. In my experience doctors like to compartmentalize problems – there’s no way that anything could possibly be connected. It is this mentality that slowed my recovery by over a decade. If a single doctor had just taken a look at the bigger picture instead of trying to treat everything individually, I may have been cured years ago.
Now that you have some background into what Hidradenitis Suppurativa is and the psyche of it’s sufferers, subscribe to this blog to learn how I got my HS to go into remission. I’ll be posting Part 2 of this series later on this week. With a Primal/Paleo diet and lifestyle and a little record keeping, it is possible.
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Hi! I am extremely excited to read your posts about HS. I too have suffered (continue to suffer) from HS since puberty. Since going primal I have noticed a severe reduction in outbreak (mine are mainly underarm, and buttock although occasionally groin) but not a total remission. In fact, I am just coming off a particularly painful bout in my underarm. I believe that diet has helped me tremendously, but that stress plays a big part and also physicality. Certain bras, any use of deodorant or powder, and, most unfortunately, shaving cause flare ups without fail. It is true, though, that diet has been key. I have bad flare ups once or twice a year now as opposed to once a month.
Kori: Over the years using antiperspirant, I had rashes for yrs. a dermatologist told me to stop and see what happens..the rash was gone in several weeks. I now use white vinegar rubbed on with cotton pad which controls bacteria. I also had break outs on buttocks and under breasts. Switched to eating primal 90% and cleared up. Ditched raw tomatoes also. /food sensetivies can show up as you get older also which takes time to see which foods to avoid.
Count me among the grossed out by the condition so never told my doctor about it and never knew there was an actual name for it. I just thought I’d always been prone to really bad cases of infected ingrown hairs. Also have PCOS. Paleo is what works for me.
Thanks for writing about this. I’ve had the problem for years. I didn’t know the name of it and I’m a nurse. I just called it abscesses. One dermatologist I went to wouldn’t touch them and barely looked at them. Another dermatologist had me take a course of antibiotics and wash every third day with hibiclens for a month but they came back. I keep lancets on hand to puncture them and drain them as soon as I can, then they aren’t as painful. I had one small area that was so chronically infected that I had it removed by my OB Dr. I’m so careful with my handwashing at work because I fear I might be an MRSA carrier. I can’t wait to hear how you got rid of them permanently.
I came across your site, simply by chance. These past few nights I have barely slept a wink. My 16 year old daughter was diagnosed with this condition a few short months ago when she had one of these so called ‘boils’ removed from her armpit by a surgeon, in his office. Of course, like any mother, I researched HS following that diagnosis and saw many images online. Needless to say, I was terrified. It may have been wishful thinking on my part….but I thought we were done with this so called HS after that removal and my daughter would not have to worry about this condition affecting her as some of the stories I had read online.
Now, she has more and they are in both armpits. And, I need to mention that the one area where the doctor removed the lump, has never fully healed.
I have been on so many websites and in reality, it is the same information copy and pasted over and over. NOBODY has any real information about what can be done for this disease. It is breaking my heart. My daughter is a beautiful young woman and I can’t imagine sitting idly by while this condition takes more and more hold over her body. As a mother, I want to find out everything I can about this disease, hear from others that may have found ways to keep it under control and what I can do to help her.
I need to make another appointment, this time with a dermatologist, and I dread the reality that they really won’t know what do do for her.
Thank you for sharing your experience and I look forward to reading more.
I am so sorry that you suffered with this condition. I never knew anything about it til reading your blog post. I love how frank you are in your writing and I’m sure that you are helping many many people in your candid conversation about this skin issue. I’m also grateful that you are finding relief from this. Keep on writing, I love reading what you have to say on this and so many issues!
Very important blog entry to get out there on the webiverse. I applaud your courage. I don’t have HS, but from the pix, I may have dated someone with a mild case of what I’d just thought of as “buttcrack acne.” You’ve been such an inspiration for other reasons and have come along into my life at just the right time. I think you’re great.
Wow!! I have found a name for what I have been suffering. I started Paleo because I thought it would help with the painful lumps that I had started getting in my groin area and on my stomach. Not to mention the psoriasis that seems to be getting worse every year. Before paleo, every diet bandwagon that I jumped on was all about the extra weight, now, I just want to be healthy. Don’t get me wrong, I would love to lose the extra 80 pounds of “baby” weight that I am carrying, but really I just want to be happy and healthy. Vibrant.
I am trying to stay paleo, but stray quite frequently. I am in the process of converting the whole family :)
Thank you so much for your post, now I know that I am on the right track
Heather
Hi Primal Girl:
I never heard of the condition and I do not suffer it, but I support you. I believe strongly that shame and hiding is the worst offense. We all suffer from something or another and we have all been embarrassed about them at one point or another. Information and understanding goes a long way. So I just wanted to say that even though I do not suffer it, I am so glad you were brave enough to share it with us. Who knows maybe my daughter or granddaughter will suffer from something similar someday. I also believe in primal, I cannot believe the misinformation out there about sat fats, cholesterol, etc… Thanks for the website, keep it up!!
OMG im in tears just knowing that someone is actually going to tell me something that might help me get rid of this. I’m only 20 and I have had it for a few years. I recently quit smoking because I read that affects it alot, and it has helped A LOT. Just not completely, just like you I dont get them in my arm pits or my breats. I just want help, ill do anything, ANYTHING. Your an angel.
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I have spent most of my life being sensitive to foods and at some point realizing that this was a blessing in disguise, because if I was able to eat anything I wanted I’d been even heavier. Along my journey I experienced that connection of what I eat to how my skin reacts as an indication to ‘bad’ foods. I do no have HS and now feel that my skin problems are very minor. But I offer to you the same way of releasing some more negative thoughts about your body.
This dis-ease is a blessing in disguise, helping to show you the way to optimal living. Eating the right foods will help cure it and so will thinking the ‘right’ thoughts! Primal Girl has added a huge piece to healing here by bringing this out in the open for people to deal with. Can’t get much better than that!!!
Health issues have become so compartmentalized and it’s good to remember that everything but everything is connected.
So glad to have found this. Thanku so much for giving us a voice!
You’re welcome Felicia. I hope it helps you! :)
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THIS. The autoimmune paleo lifestyle has all but cured me of mine; very rarely I’ll get a flat red circle (no WBC center) a couple times a year. About 10 years ago I was on a very non-paleo low carb diet and found that Splenda caused terrible HS breakouts. Next worse was tomatoes.
Yup, Splenda seems to aggravate my HS as well – I was having way more flareups when I was eating Splenda, even though my potato intake was lower. I wonder if the maltodextrin in it is sourced from potatoes. No one seems to know where it comes from. I refuse to eat that crap anymore. Tomatoes also affect both me and my kids.
I think there is a combination of factors that need to occur in order to have a flareup. If I ate some sugar-free (read: Splenda filled) candy along with some potato chips right before my period when I am stressed, then for sure I will have a flareup. Throw in some artificial color and all hell breaks loose. If I eat TWO potato chips with none of the other factors involved, I will simply get a zit on my chin. It’s still enough to tell me that some inflammatory response has been triggered, but not enough for the HS flareup. I’m still doing experiments on myself, but everyone is different.
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Wow! I have suffered from this since I was 23 years old and I am now 43, so 20 years of it. I often thought it was stress related. I have the same area being affected, no underarms either. I made a connection to sugar and it’s been much better since quitting sugar completely. I only use stevia and very little. I went Paleo about 3 years ago, but quit the grains, potatoes, pasta about 2.5 years ago. It was slow going, cutting things little by little. I have had periods of 30 days without dairy so I don’t think dairy effects me. I’ve also been without nuts. I don’t seem to get reactions to either when I add them in. But I’m going to try a 30 days autoimmune protocol next and follow your suggestions. Since going Paleo and quitting sugar, I only get a flare-up very infrequently (I haven’t made the connection as to what it could be, I do sometimes have 90% dark chocolate but haven’t noticed a connection and seems to be fine) and sometimes I have drained it myself or just apply a hot compress in the shower and it will sometimes just sort of reabsorbs back into the body. Does that happen to you? It’s always been the weirdest condition and I also feel ashamed about it. I’ll tell people I’m walking funny because I have a cyst on my leg (I never say groin, so embarrassing.)
I’ve found there IS a stress connection for me, but only when I combine stress + nightshades + lowered immune system. Others have seen a connection with their periods, which is a time when our immune systems can typically dump our gut flora due to hormone changes. Since you’ve already tried eliminating nuts and dairy with no effects, the AIP should be a little easier on you, since you’ve already ruled out those items and can include them.
Yes, I noticed boils “reabsorbing” at times, or just not coming to a head at all, but only since I went Primal. I think that when I only get a small dose of potatoes, I will have the autoimmune response, but it is continued intake of potatoes or tobacco that will cause the boil to get bigger and take forever to go away. If I am only “dosed” once, it goes away much quicker.
In order to make the connection, you are going to have to keep a food journal and keep track of ingredients in things like chocolate that you are eating. Some has soy in it, some doesn’t. Any time you eat out, you are getting soy for SURE, dextrose can be wheat derived, you never know what you’re getting unless you make it yourself. It might even be the combination of small amounts of something combined with something else. Let me know if you need further help, I might be able to see a connection you can’t. :)
I just recently have gone 30 days without eggs. And then, this past weekend I had an omelet on Sat. and one on Sunday. I haven’t noticed anything this week. I plan on starting the AI protocol next week…do I need to drop the eggs again? Eggs are fairly new to my diet since going Paleo in the last several years. Before that, my whole life really, I never ate eggs because I thought I didn’t like them. When I quit grains for breakfast, I substituted eggs and have grown to really enjoy them. I would hate to quit them. I guess my question is in order to do the AI protocol correctly, do you have to quit everything at the same time? Or can I keep the eggs since I just did 30 days without them and added them back in over the weekend and no flare-ups or side effects?
Thank you. It helps so much to know that I am not the only one with HS. I’ve struggled with this for 20 years, not understanding what was wrong. I tried many of the things you mentioned, not wearing underwear, loose clothing (have to do this when having a flare-up), missed work a lot, lots of misery and pain. Just horrible. I have plenty of scars from being lanced, minor surgeries that have left scars, tons of antibiotics that did nothing, tried hibiclens and sulphur soap, clindamycin ointment, and wasted a lot of money on docs who told me nothing. They wanted to put me on Accutane and at the last minute, I opted not to do it. I’m happy that I never took it. I have used coconut oil, too, on flareups and it seems to help.
First off, since you’ve been on so much medication over the years, get yourself on some really good probiotics. I suggest Florastor, which has really worked for me. There are tons of great alternatives out there, though, including brewing your own Kombucha. But I continue to take the Florastor and haven’t been sick in ages.
As for the eggs, in order to know how they affect you, you will need to remove them. My husband has a problem when he combines wheat and eggs, for instance. Eggs on their own are fine, wheat on it’s own causes IBS, but wheat and eggs together cause him to be out of commission for a week.
I know how you feel about the near miss with the Accutane – I considered it for a brief moment, too and am soooo glad I never took it.
My Dermatologist put me on Accutane as a very young adult before figuring out I had PCOS and it didn’t help. I wish there was more information 20 years ago before I took it but just another reason to question medical advice. I have been aware off sugars causing this for me but I have never tried the Paleo diet. I am going to give it a try and I will post my results. My husband found this blog for me because for whatever reason I have been having more trouble the past few months after many years of having it under control for the most part. I am excited to have new information which means hope! Thanks! Beth
You are most welcome. I deal with the connection between sugar and HS in my book, which is slowly coming along. I hope you get things sorted and I’m sure that Paleo will work wonders for you! Good luck!
well, I haven’t been on any medication like this for 10 years. I stopped going to the doctors to treat it around that long ago. I’ve just done my own thing at home, compresses, etc. I did take probiotics for a long time. I was using Primal Defense Garden of Life. But recently I heard that it’s not really a good product and that the probiotics don’t survive the acidity of the stomach. I’m skeptical now. But I have heard good things about Florastor. Do you need to keep refrigerated? I wonder if that’s the way to go. So, if I do the AI protocol, I’ll need to stop eating eggs again and all the other items, too, right? Bummer.
Still trying to hang on to the eggs, lol, and not have to give them up. Since going Paleo 3 years ago, I’ve eaten eggs almost every day. Except for a few weeks here and there and the recent 30 days without it. My HS is much better in the last several years. If eggs were a culprit, wouldn’t it be worse since I eat them so much?
I thought for sure it was sugar, and I was wrong, because despite quitting sugar over a year ago, I still get the HS from time to time (much better than before). So, there is something else bothering it. I’d guess nightshades, but I know I have to do the protocol to find out.
Yes, I’ve noticed a connection with HS and my period, too. And stress. And sugar. I make my own chocolate for the most part with coconut oil and organic cacao plus a few drops of stevia. When I buy it, I buy the Lindt 99% or the 90%. It has soy lecithin I think. Is that what you mean? Soy lecithin is in a lot of things and hard to avoid. Otherwise, I avoid any kind of soy products and have for a very long time. WE don’t eat out except a few times per year (special occasions). We buy all our food organic, grass fed meats, raw dairy…all from a farm. I do a lot of cooking. Kids are pretty much primal, too. They do have pizza at birthday parties and here and there with friends. But they like my version just as much. I make ice cream for them with the raw dairy and stevia and they love it. I also avoid dextrose, maltodextrin, anything with corn, GMOs. I know it can’t be perfect, though. But we’re definitely on the right track here ;). I’m so grateful to have found this blog, though, and for your help. I can’t think of what else it could be, but maybe it’s a combination like you said, wheat and eggs together cause the HS.
You are a miracle for me! Thank you, thank you, thank you, thank you….
There will never be enough words. Reading this was like reading my life story. I began having issues with HS at 13 as well. I also have never had any issues in my under arms, but have had and do have golf ball sized and larger flare-ups in my groin as well as horrific and painful issues under my breasts. I have Celiac disease and have been gluten-free for over a decade, but the HS has gotten worse. I just self-diagnosed HS in the last few days after a long, long line of doctors without any answers. I am going to try the strict auto-immune paleo diet and have never been more excited about anything. I pray this works. This could be life-changing. Thank you, again.
Please let me know how it goes!! I’m really hopeful for you. :) I would love to know what your trigger turns out to be (if you’re gluten free, then you already know it’s not wheat – try nightshades first, then beans and legumes and if you have no luck with those then try dairy, eggs, nuts, etc.) You may not have to do the strict AIP right away. Think about what you’ve INCREASED since you’ve gone gluten free. Since the HS has gotten worse, it must be something. So far, everyone I’ve talked to suspects nightshades or wheat.
Treatment that works
Dear HS sufferer,
How do we prove to you that this treatment is different from the rest?
There are too many remedies and recommendations out there, when a real treatment & info is in front of you, how do you tell this is the one that works all the way to complete recovery?
Our agency is Lux Research -Give us One & a half months, after taking our course treatment and that
should be enough proof – since almost everyone who took our formula mentioned
they noticed the difference, the Transformation and the improvement is significant and people will be able to tell the change is going in the right direction – improvement and symptoms disappear or less intense means – this treatment works.
One month & half – 45 days is not enough to cure but it is sufficient time
to compare the Before and AFter RESULTS and that is the sign & clue that tells you this is it and all you have to do is continue and you’ll get over this (hateful) disease.
Hidradenitis suppurativa is an autoimmune disease and is caused by Antibodies to gluten.
How & Why – the mechanism is called Oral Tolerance (O.T.).
Basically – O.T. – subjects ingest tiny doses of antigen over time and the Theory is the
immune system develops a tolerance to that particular antigen and in time will lead
to a cure.
If you want more info on Oral Tolerance , please view:
http://suite101.com/article/oral-tolerance-therapy-a8796
However, the O.T Explanation . is too simple – The Most Important advances are given by authority & Expert – Dr. Polly Matzinger who says O. T. depends on the T suppressor cell which lowers Antibody production.
Dr. Matzinger’s theory – there are 2 signals for T cell full Activation:
1.) first an antigen -We cannot use gluten, it causes HS, instead a peptide similar to gluten – this primes or makes ready theT cell. But without the 2nd signal the T cell remains in anergy( no activity).
2.) the Second signal – is CD80 or CD86 – either one is enough to make the Tcell go thru the changes that makes it a fully activated cell.
People produce CD80/CD86 but in autoimmune patients it is not enough
to fix HS.
However, there is a safe way of inducing the blood to produce CD80/86 factor & that is through Herbs.
EXamples:
1.) Agaricus bisporus – can induce CD80 . 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
In our treatment, a course is 21 days.
Moderate cases need – 3 to 4 months.
Severe – need 4 &Half to 5 &half months treatment.
If you get this treatment, you will know it will be successful since every course, there
is transformation that brings better and better results than the previous course.
Altho, we have cures, it is not enough to be accepted by the Medical
community and we have to go by THEIR Rules.
We are giving our Treatment free to HS folks. We shoulder all costs
including Air Mail expenses to you.
This is a win-win situation, you get healed and we get acceptance.
WE will write an article for submission to a health, New medicine or Research
journal.
If you are interested in trials, please write us.
himmerland2000@yahoo.ca
Lux Research – a division of Lux Health Resources,
BC, Canada
I am approving this comment on the hopes that someone who is not willing to change their diet might have luck with your procedure, but I already see some flaws in your logic, based on what you’ve written above.
Yes, HS is autoimmune in nature but it is not caused by gluten in EVERYONE. Only in certain individuals. For me, HS is caused by potatoes. I was gluten-free for several years before discovering potatoes caused HS for me and did not see a reduction in HS outbreaks, even though I was very strictly gluten free during that time. I have spoken to other people who have said that their HS has gotten WORSE since going gluten free.
I applaud that you are researching this autoimmune disease and I wish you luck. However, I would caution anyone from trying medical intervention BEFORE trying a dietary intervention first.
My HS is in complete, 100% remission and has been for some time now. I suffered without any kind of remission for over 20 years before discovering that potatoes (and nightshades in general) caused me to flare up.
Isn’t goji a nightshade?
Yes goji berries belong to the nightshade family. I’ve never had them so I didn’t think about including them. Thanks!
I have had HS for more than 30 years I have discovered in the last year and a half Milk proteins gives me flareups. I have been totally dairy free and have a lot fewer flare ups. I have other medical problems in addition or caused by HS. Just my 2 cents Hope it helps someone. Good Luck to all
I just turned 22 yesterday and I’ve been dealing with HS since about age 12. For me it started in between my breast and in the past 4 years has spread under my arms and breast and about 6 months ago to my groin and butt. This makes me so depressed since I’m always in pain! I can not wait to go paleo because I am just miserable and so self conscious. I hope I’ll be able to get this under control. I am darker skinned so my scars may not heal but at this point all I care about is not being in constant pain! (I will try cocoanut though!) Thanks so much for posting this. It has given me a lot of hope I know it can be better! I also have PCOS and my skin has never looked worse! but reading your posts have totally inspired me to get the ball rolling and get this under control.
Oh my!! I’m so happy to have stumbled upon your post on Robb Wolf’s website AND this blog. I do was diagnosed with HS about 10 years ago and it is frustrating. I discovered that it was always exacibated by anti-persperants so I switched to natural deoderizers. But I do occasionally get flare ups. I started Paleo less than 2 weeks ago for another health condition. Now I’m gonna try to limit the nightshade vegetables from my diet but it’s going to be hard because spinach is my favortie vegetable.
Spinach isn’t a nightshade! So that’s good news! :)
Good for you, sharing what we all go through and what is working for you now. I came across this, looking at food/HS connections, as it has become more clear to me over the years that the triggers were there, but hard to identify. This year I was diagnosed with silent reflux and now I am seeing a relationship between trigger foods in both conditions. Tomatoes, for sure…and I’m afraid, maybe that nice citrus Belgian beer I have so enjoyed lately. So much for that. *sigh*
Anyway…I did want to share a tip. I have found that A & D diaper cream (with zinc) is very helpful when a boil first starts. I use it twice a day on those, and they will either recede or break faster and heal faster. I’m sure it’s probably the zinc in it.
Also, not to bum anyone out, but I am 56 and the HS has not improved at all as I pass through menopause. That probably varies from person to person but mine is the same as ever.
Thanks for the tip! Since it’s meant to be put on skin, diaper cream with zinc would probably work wonders. Can’t believe I never thought about it! I was of the mindset of just leave it alone and let it do it’s thing, after I tried all the messy turmeric compresses and herbal remedies I could find over the years. I wonder how zinc cream would affect scarring. Anyone try it for that purpose? I don’t see how it could possibly hurt.
A lot of people are finding that wheat is a trigger for them, so yes, sorry, that beer is off the table. You can, however, try a nice gluten-free beer (Redbridge is a nice one) and add your OWN orange to it! It’s also nice with lemon or lime. I know the beer you’re talking about, you’re right, it IS good. But having your HS go away is even better. ;)
I tried my son diaper rash meds too! It helped but it doesnt cure it. I was just desperate
It does help when you have a flare up. You’re right, it doesn’t cure it but it helps with healing.
I am 56 as well and mine got worse after menopause. I am so happy to find this site!
Thank you. I have psoriasis. I feel like I’ve tried everything. I also think I have HS too. A picture is worth a thousand words. I’ve had some form of HS under my arms (not always), groin area (more frequently) and buttocks (always) since I was a teenager. I’ve been primal/paleo since January. I never thought nightshades, eggs and dairy would cause the problems for me. I guess I’ll feed my garden’s bounty to the rest of my family and neighbors. I’m resolved to try this for 30 days. So in addition to sugars, grains and legumes, I need to completely avoid eggs, dairy, potatoes, tomatoes, eggplants, peppers, tomatillos, curries, paprika and chili powder. What about sweet potatoes? Anything else? Can I still drink coffee?
Sweet potatoes are fine and so is coffee. Thank. God. The list you included seems pretty complete, I would start with wheat, tomatoes, and legumes and go from there.
I’m writing a book about this as we speak and hope to have it out by the end of the month. If you have any more questions for me, PLEASE fire them off so I can make sure I include them!!
Did you ever finish your book? What is it called?
I’m almost done. My original plan for a 20-odd page booklet has turned into a 300 page official book with a publishing contract and the works. It will be called The Hidden Plague and will be released late spring/early summer by Primal Nutrition Inc, available on http://www.primalblueprint.com and Amazon both as an ebook and a paperback. :)
Thank you :)
I am at stage II and have been for three years, my doctor recommended hiboclens, which obv. didn’t work. I recently went in to the doctor last month asking for antibiotics, she barely looked at my inner thigh so she saw a scar but didn’t look near my groin on my panty line so she didn’t see the rest of my scars, and bumps. I shrugged it off, figuring that the antibiotics would clear it up as well as vigorous scrubbing and I was wrong!!!! My groin has more bumps than ever. I did what anyone would do in this situation: I googled it. After three years of having this issue progressively get worse I feel like I’ve been lucky enough to discover the name if it and the treatment in one day.
I hope this works for me, I’ve got a follow up appointment in 2 weeks and I’m going to ask to discontinue the antibiotics. I’m also going to tell her what it’s called and ask for a recommendation to a dermatologist.
I was starting to think I was just dirty! Despite showering twice daily and having to go without underwear I thought I was just not washing well enough.
I am at a loss as to what to eat for breakfast. No grains, eggs….help
Okay, okay, I will include some meal plans in the book. I wasn’t going to because I want to teach people how to figure out what they want to eat themselves, but it’s clear that some of you need some guidance on this. :) In the meantime, why not eat leftovers from dinner for breakfast? Bacon is always an option — so is sausage, any kind of meat plus fruit and vegetables. Sometimes all I eat for breakfast is coconut oil in my coffee (put it in the blender, you’ll be amazed!)
Thank you for this information. Like your other reader who commented above, I’m also in health care and had no idea what this was. I honestly thought I had caught some sort of weird, wart-like virus from having a mammogram because of it only being under my breasts. Humid weather and sweating definitely seems to make it worse. I have also used coconut oil as well as hydrogen peroxide on my skin to help prevent flare ups. I use essential oil of lavender on the lesions when they form to help soothe and heal them. I also am into menopause and they have slowed down but not stopped. Mine got better dramatically when I was on HCG diet without carbs, although have since fallen off that wagon. Am working my way up to full paleo. Nightshades are definitely out next.
Good luck! Let me know how it goes. Good call on the lavender (I used tea tree oil), peroxide (I used rubbing alcohol) and coconut oil. Standard wound care is what works best for these things. :)
TARA!!!! Thank you for this! I was just reading about you in one of Mark Sisson’s books that mentioned your HS and immediately got on my computer and googled you. Funny thing is, I’ve been to your blog many times before and just missed these posts.
I’ve had this horrible condition since my late teens, too. I get the heartbreak, shame, and confusion of it. The clueless doctors with their Hibiclens and zinc powder.
I have been “primal-ish” for a year or so and have noticed a reduction in my outbreaks, but still have some awful ones now and again. I’ve recently recognized that I’m sensitive to nightshades and have cut back, but am not always vigilant about peppers, paprika, etc. Your post has inspired me to cut them completely and see what happens. This is the first time I’ve heard of ANYONE who has cured their HS. I really thought that I would never experience true remission from this…you’ve given me so much hope.
I’m so glad I could help.
You got zinc powder at the doc’s? Wow, a progressive thinker. ;) I was never given that. Keep with it, completely cut nightshades and see what happens. I have some other triggers listed in the book that you may want to consider. Good luck!!! :)
Hello Primal Girl,
I have been suffering from HS since I was 20 years old. I was a swimmer, and it broke my heart when I couldnt really wear a swim suit any longer without embarrassing scars. I am currently doing the autoimmune protocol for 30 days or more. I have been surprised by not hungry I am. I was wondering…how long did it take you, once you started eliminating your trigger food to notice a difference? It’s been a few days for me and I have a couple new ones, which is somewhat depressing.
Thank you,
Erin
There are so many things that could be triggering your immune system. The more research I’ve done, I’ve discovered that the autoimmune diet is just the tip of the iceberg. Just hang in there, it will take a couple months at least. If you’re still breaking out, it is because your gut is still “leaky.” It takes some time to heal.
What about dairy, gluten, and soy free chocolate? I’ve found the live life mega chips can be a sweet treat.
I eat chocolate all the time. The sugar can cause issues but if you have it in small doses and as a treat rather than an everyday thing, it shouldn’t be an issue. I would definitely try cutting that out only as a LAST RESORT. :)
Hi Tara,
I’m a 21 year old female in Canada and have been suffering from what I now believe to be HS from even before I hit puberty – well, almost as long as I can remember. I’ve always desperately hid my cratered buttocks from friends, family, physicians, the world… it’s embarrassing.
Fearing intimacy, I made up for my lack of sexual experience in experimentation with alcohol, recreational drugs and smoking through most of my teens. After meeting the right guy I abandoned my party lifestyle, also started taking oral contraceptives and that cleared up the symptoms to the point that I felt comfortable enough to be sober and intimate for the first time. My boyfriend commented on the “bumps on my bum” about a year into our relationship which opened a floodgate of self-loathing, depression and humiliation. I burst into uncontrollable tears and he must have clued in that this has been an extremely sensitive issue my entire life and has since not really brought it up. I’ve asked my family doctor a few times for her opinion on individual occurrences, but never thought to tie the “cysts” in my underarms to the plethora of “ingrown hairs” in my pubic area to the recurring boils of “acne” on my buttocks.
This condition has caused me a lot of emotional pain and anxiety and I cannot even imagine the emotional horrors and physical pain of stage 3 HS. In the last few years I’ve drifted between remission and what I believe to be stage 1 HS, but before taking oral contraceptives and while I was smoking/partying (and even before that through puberty) I suffered through constant outbreaks of disgusting boils/abscesses mostly on my buttocks all which left scars.
I’ve recently become a great deal more health conscious and have been entertaining the idea of going paleo in attempts to eat clean so that I can achieve my weight loss goal. I’m not overweight, I go to the gym semi-regularly at the least and haven’t yet been able to cut out certain foods which has resulted in a fat-loss plateau. After reading your story and everyone else who has shared I’m definitely going to try paleo and cutting out nightshades. I’ll also ask my doctor if and what she knows about HS now that I actually know that there’s a name for it and that I’m not the only one.
Also, does anyone have any knowledge or experience of blue light therapy for treating current HS outbreaks and/or scars? I have a gift certificate for it, have nearly flawless complexion on my face and am still working up the courage to disclose my actual problem area. It’s something I want to do if it can help but I’ve heard mixed reviews about it’s effectiveness in treating actual acne.
Anyways, thank you so much for sharing your story. I look forward to the release of your book and will definitely be reading it.
Yours, Robin
Oh honey, you have no idea how much I identify with you. Your story is very similar to mine. Let me know how the diet changes go and if you need any support. I don’t know anything about the blue light, but if it is used to treat acne, it may help with some of the scarring. It won’t prevent new lesions, though, only scarring the area to remove hair follicles or healing your gut will do that.
I’ve found that sun beds help with acne and HS, too – not preventing it, but Vitamin D seems to help. Since you have a gift certificate, it’s worth a shot to help with current scars. I’ll do a little research on the light therapy and include it in the book. xoxo
Thank you thank you thank uo thank you thank you. That is all :-)
You are welcome. :)
i have been suffering from this horrible disease for the past 5 years. it started out as just a small bump under my arms but over the years it has become quite severe. i am at my wits end, i have tried almost everything and have yet to see results. this disease has truly changed me as a person. once outgoing and happy, now a sad hermit. i went to see a dermatologist when the break outs were minimal and it was suggested that i try accutane. why in the hell did i do that. instead of getting better i went from having one small bump under my arm pit to multiple painful bumps in areas i hadn’t had them before. when i told the dermatologist about all the new bumps that had popped up, i was simply told that it would get worse before it would get better. well not only did it get worse it became downright unbearable. i found myself crying all of the time ,not only because they hurt so bad but because i was ashamed of the way they were scarring up my body. i refuse to let this disease dictate how i live my life but i don’t know where else to turn. if the doctors cant help me , who can? this disease had affected me so much emotionally i thought i would need some kind of medication just to be able to cope. well, i am a strong person and not a pill taker so that is just out of the question. i am glad to know that i am not the only person that is suffering from this because for a long time i thought i was the only one. i look forward to reading about how everyone is dealing with this and maybe someday i will be able to share my remission story with you all. i would just like to say to everyone that although things seem pretty bad at times , hang in there because one day it will get better. i will not let HS take over my life and you shouldn’t either. i would also like to thank you Tara for sharing you story, thanks to you i can finally share mine. i would also appreciate any suggestions you have for me in dealing with this. take care
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Thank you, thank you, thank you for finally giving me a viable treatment option and for giving those of us with HS a voice. I’m dismayed that it took me doing google searches to find you and even consider the primal/paleo path as an option, and that my docs are so underinformed about HS that none of them even knew what it was. Well, until a new derm gave me the official diagnosis earlier this year, that is. I’ve had this since I was in elementary school, and NOTHING has ever helped it, except extreme weight loss, but it was present even then. After a week of doing a (mostly) Paleo diet, I saw a marked improvement in my HS, with no new sores, for the first time ever! Of course, then I had a couple of bad/lazy/pms/working2job days and I cheated (a lot)…and within 24 hours of each time had a new sore. I’ve learned my lesson! It’s looking like white potatoes and maybe wheat are my culprits (some corn starch and corn syrup snuck in earlier in the week and I was fine, and I haven’t had rice.or other grains). Haven’t been able to give up eggs or tomatoes, but saw improvement even while eating those almost daily, so I’m optimistic that I can keep them. Anyway, I just really wanted to thank you. I’d tossed around the Paleo idea for weight loss…now I have an even better reason, and better motivation. although the 8 or so pounds I’ve taken off since starting aren’t bad either! You rock, Primal Girl!
Hi Greace
if you are still out there and reading these posts, please get in touch with me. I, too, am a mother of a beautiful young girl who is going through this nightmare. I would love to talk with you.
Thanks
Laura
lfinks@yahoo.com
Hace 1 semana tengo dos erupciones sobre mis pechos, son iguales a los que describes, rojizos, con pus y no se quieren sanar. parecen secos pero cada vez que tomo una ducha parecen sangrar.
La verdad no tengo idea que es, es la primera vez que tengo algo así sobre mis senos, pero creía que solo era acné ya que toda mi vida desde los 13 años he tenido acné pero solo y exclusivamente sobre mi cara, entonces supuse que era solo acné. pero tardan tanto en sanar y aveces tengo pequeñas picadas de dolor que he comenzado a creer que es otra cosa y es así como he encontrado tu historia y la verdad estoy casi segura que es HS.
Lo irónico aquí es que solo hasta ahora a mis 23 cuando el acné que me ha atormentado toda mi vida sobre mi cara a comenzado a desaparecer por su propia cuenta, vengo y me entero de que otro tipo de acné quiere salir sobre mi cuerpo, pero soy afortunada en tener tu testimonio y como te había dicho hace 1 semana que comenzó con dos erupciones entonces me voy a poner en la tarea de la dieta, me podrías dar un poco de orientación de que debo y no debo hacer.
Dime si vale la pena tomar antibióticos o solo me concentro en la dieta?
Hi, I’m so sorry I don’t understand this. Can someone please translate or could you please write me again in English? THanks!
I have had hs my whole life. I too have considered suicide many times. I always was ashamed and felt alone. Im married to a wonderful man who never made me feel less than perfect. Might i add hes super hot! I have two children who i pray do not fall victim s to this horrible disease. I have had surgery 20 years ago and left 2 awful scars in my groin area. I have noe had many outbreaks in the groin area since but recently i made the worse decision ever and that was to have a tummy tuck and scar revision which i now believe due to the added pressure and edema to that area is now causing outbreaks. Ive been crying everyday since the surgery and now i have to deal with painful boils. I dont know what to do. Im so depressed
A few notes of inspiration:
- Experiment with foods. I now know that ANY chocolate will cause almost an instant boil for me. I simply can’t have it.
- A & D baby rash ointment with zinc applied twice daily definitely clears them up much faster.
- I have three kids, the youngest 21, and none of them have HS, so take heart. It may very well not be passed along to your kids.
Do you react to organic cocoa? Chocolate comes from seeds so it is possible that its your trigger. It’s also possible that its the soy or something else in the chocolate that is affecting you.
Good luck in this. Chocolate doesn’t affect me, I don’t know what I’d do if I had to give it up!!! Wait, yes I do: have you tried carob?
Also, consider coffee as a potential trigger as well. :( if you’re still flaring up, that is.
I don’t know about organic cocoa, but I do know any kind of chocolate seems to do it. And yes, it’s tough to totally give up.
My coffee intake is minimal (1 cup a day), but as with chocolate, I do realize any tiny bit of something that causes a flare up can be enough to do it. I might have to go cold turkey on the coffee and see.
I have one now which appeared after having about 4-5 little Reese’s cups. However, the PB cups were delicious:)
Peanut lectin passes through the gut wall all by itself, carrying stuff with it into your blood steam, so you could actually be reacting to the peanut butter. Also, Reese’s, Hershey’s and other American candy makers put all kinds of crap into their products, including TBHQ, BHA, corn syrup, emulsifiers, chemicals, etc. I find that Hershey’s and Reese’s in particular make me break out, but organic chocolate (70-85%) does not. It’s something about the sugar that used and the combination of substandard ingredients and chemicals that does it every time.
It’s probably for the best just to cut it out completely, but personally, I would try every thing I could to find a brand of chocolate that works for me. :) I would even experiment with buying organic cocoa butter and making my own chocolates, I love it that much. Good luck!
Wow, the peanut butter….could be the culprit. I have had very little chocolate, but when I have recently, it has been something like a Reeses. Might have to experiment further, because I hate to give it up totally! It’s tough because I have silent reflux, too, so I am getting frustrated with anything good left to eat. They say to eat whole grains, yet they could be bad for the HS. I need a personal chef.
LOL, no you need my book! :) If you learn about all the different problematic foods, you’ll know how and why each one affects you. Whole grains ARE bad for HS. Whole grains are bad for EVERYTHING. Silent reflux is often caused by dairy. You may also have low stomach acid. Sit tight, the book is coming soon!!!!! :)
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Hi
I really appreciate reading your post. I just learned that I have HS after being misdiagnosed for many years from my doctor. I have used many meds and had it lanced and nothing works. Potatoes is one of my favorite foods and could be the source of my problem. I will check and see. I was reading your post and replies and I see that you guys are suggesting a diet called Paleo. Is that correct?
Thank you
Kim
Yes we start with a Paleo diet and then move in to the realm of the autoimmune Paleo diet (which means removing some things like eggs, potatoes, tomatoes (all nightshades), dairy etc. and then adding them slowly back in after a month or so.
Instead of potatoes, try yucca root, taro root and sweet potatoes. I’m fine with all of those and they taste BETTER than potatoes! :)
Hi, like many others here, I’ve suffered from HS for 15 years and was diagnosed about 7 years ago. I tried all the antibiotics, creams, soaps etc. that we all have with little to no success. My dermatologist suggested I try birth control but was unable to due to other complications. Long story short, I ended up seeing a pharmacist who deals with bioidentical hormone therapy. He knew nothing about HS but after doing a hormone saliva test he said I had some of the worse results he had ever seen. I am now using progesterone cream daily and have had a significant decrease in number and severity of flare-ups. I still suffer and will be looking at diet changes to hopefully get rid of this for good!!
Hello,
My name is Nicole. I am 18 years old and was just diagnosed on January 30th, 2013. I have had HS since I was about 13 and was very embarrassed to talk about it with anyone. It started out with one small boil on my groin and now my groin is covered. I then got ingrown hairs and pimple like bumps in my armpits. I now have quite a few between my breast. I use a aluminum free deodorant and have seen less pimples in my armpits but now I have the harder cyst like bumps.
On February 9, 2013, I decided to go Gluten Free. I will continue with this lifestyle if it helps even in the slightest. If it doesn’t help, then I will try dairy free. I will also be cutting out nightshades. I started a journal that I bought at Barnes and Noble where I will be recording how I feel each day, what I eat, when I go to bed and wake up, and what my HS is like that day. I hope to see progress. My dermatologist also has me on a topical antibiotic called erythromycin which I apply two times a day. I haven’t noticed much difference except for between my breasts. I just have dark red scars there for now.
The cover of my journal is a quote:
“God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.” – Reinhold Niebuhr
I hope everyone that has HS can stay positive and keep trying. I know there are some aspects I’m going to have to live with such as the emotional pain, but hopefully I can eliminate the physical pain.
Primalgirl:
Thank you. Thank you. Thank you for the insight on HS and how you have gone into remission. You are such an inspiration to me and I really hope one day I can be in the same position as you. When is your book going to be published and what is it called? I am very eager to read it and know as much as I can.
Thanks again,
Nicole
Thanks for this Nicole. The book is called The Hidden Plague and it should be released in the next couple months. I got a publishing deal with Primal Blueprint, so it depends on their editing/publishing process. Good luck with the changes that you’re making and I so happy you’re writing things down. That’s something I wish I had done from the beginning.
Hello, thank you for sharing your story!
I’ve been living with HS for the last 8 years. My lesions used to be under the armpits, in the groin, and along the backside. Once I learned how to manage the condition I found I would only break out in the groin (following shaving) and in between the breasts.
I’ve made dietary changes such as eliminating gluten and reducing dairy intake. I juice at least 2X per week (carrot, apple, ginger, or a green juice of some kind). I eat a ton of garlic. I also eat a lot of soy products. My caffeine habit tends to flip flop back and forth from tea to coffee. Overall, my diet is clean. I do consume meat.
Despite having a healthy diet, I’ve noticed the disease is slowly progressing. In September my primary Dr. put me on Tri-Sprintec (generic version of ortho-tricyclin, birthcontrol) since flare ups are so consistent with my menstrual cycle. WIth the pill and lifestyle adjustments definitely helped!! I was in remission from September until now. There are several circumstances that might have contributed.. stress (graduate student), accidental exposure to gluten, and pre-menses.
By posting I’m not even sure what I’m looking for, lol. I’ve done extensive research over the last 8 years, I’m informed but my methods just aren’t working!! I want to cure this disease! I guess I’m feeling defeated and frustrated with the disease outcome. I know the prognosis and I see it progressing over the years. I’m hopeful that there will be a time when I don’t have to worry about flare ups. I never thought I would be so dependent on probiotics, vitamins/supplements, and apple cider vinegar… I also find relief through acupuncture and swimming (something about the chlorine).
At this point, I’m open to suggestions. Should I go sugar free, should I cut out sweet potatoes, should I go on a juice cleanse? ..
sincerely,
AK
You you have no idea how amazing it was to find this blog! I honestly thought I was alone. I am from Canada & there really isn’t a lot of information here on it or people who have it. Most doctors I have seen have never even heard of HS.
I have had it since the age of 13 but wasn’t diagnosed until 3 years ago at the age of 19. I am currently working with my family doctor as well as a general surgeon who at both amazing! As of now I have underwent 4 surgerys (tailbone, left groin & in between my breasts, tailbone & right armpit and right armpit again!) I am currently on a waiting list for a VAC dressing for my right armpit. Has anyone ever used this dressing?! I’ve done some research and have found a few cases where it was used on people with HS.
But again thank you so much for sharing your story. It really has helped me cope and has given me hope! :)
Kiley MacLeod at notdying.wordpress.com has had the VAC dressing, she’s a great resource.
I think its terrible almost everyone on h.s.websites. Want money for fake cures to get peoples hopes up is horrible shame on u people. My name is lisa i have hs for 15 yrs., i thought maybe i could chat with others about all the messed up things we have to go through so years later on the webagai n i read this story totally idenified and then u have to register oh no i bet primal girl wants money freakin BINGO. Yea right all her friends had it too BULLSHIT
My first reaction was to delete this as spam. And then I thought, what the hell? There is no registration on my site, there are no costs and I have no idea what this person is talking about.
I occasionally get hate mail from people who have hardened themselves against being able to put their HS into remission. I’m sorry this person didn’t find any useful information on my site, considering it is the ONLY useful (free) information about HS on the internet. There are a lot of angry, bitter people with HS. We can all understand that mindset, being fobbed off by doctors as we’ve been over the years. I made the mistake of subjecting myself to haters on dailystrength.org (which started the hate mail) and will never again take anything personally that someone like this has to say.
Of course, I’m charging for my book, but that’s my publisher’s prerogative. It did take me almost a year to write, is 377+ pages and is totally useful. If someone wants information like that for free, I suggest they buy some emu oil instead. O_o
Register for what, where? Where is she charging you for the free dietary advice she just gave you?
You mentioned once you had your insulin you were able to control the inflammation. Was this an antibiotic? I am 30 years old and the last time and only time I had my inflammation under control was when I was prescribed steroids 11 plus years ago. For a brief second I thought I was cured. After 5 days I cried for more despised the horrific side effects.
Hi Anita,
I think I said “once I had my insulin under control,” meaning that I was eating a diet low in insulin-producing foods and regained my insulin sensitivity. It’s not a medication, insulin is a hormone that your body produces in response to glucose intake. If you were able to get your inflammation under control by taking steroids, that tells me that your hormones are messed up due to insulin resistance. A primal or paleo diet would probably be a great place to start. :)