Primalgirl Opens Up: Hidradenitis Suppurativa Part 2

Primalgirl Opens Up: Hidradenitis Suppurativa Part 2

hidden-plague-banner-draft2The response to my last post on Hidradenitis Suppurativa (HS) has been overwhelming and heartbreaking.

I knew it would be. I know what it’s like to suffer with this. To have so many questions and no solutions. To get your hopes up that something is working, only to have a flare up when you least expect it.

Grace says “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.”

Kori says, “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…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.”

Debbie, who also suffers from HS says, “I didn’t know the name of it and I’m a nurse.”[*RANT BELOW*]

HS Stage 1. You may have it and not even realize it. It comes and goes.

For those of you that are afflicted with HS, please know that I understand. I understand. I know many of you didn’t comment for fear of “outing” yourself. Others are just waiting for me to tell you the cure. I’m sorry to tell you this, but there is no cure. Like Lyme Disease and Herpes, HS will lie dormant in your system until you give it the right conditions to appear. And then, appear it will.

There is no cure. As far as the medical community is concerned.

There is no cure. But I have a remedy that works.

It took three years to find out exactly what triggered HS in me, but I have found it. My scars are gone. All but the last little scar from my last “experiment” on October 22, 2011, that is. HS scars can take years to fade. Unfortunately, what triggers the disease in me might not be the same as you, but it can give you an idea of where to start.

It all starts with diet.

HS Stage 2. It becomes harder to ignore and the worst pain you’ve ever had.

Diet? The doctors never mentioned this. I was told antibiotics were the only solution and that they didn’t always work. I was told to wear cotton underwear, to keep myself clean, to wash with anti-bacterial body wash, and when that didn’t work to pony up to anti-microbial cleansers like Hibiclens Antimicrobial & Antiseptic Skin Cleanser (more on that later). I was told to avoid shaving. To shower daily. (Don’t do that. Please.) I found old wives tales and remedies that were damn near medieval on HS forums and support groups. My favorite was to take the moisture from a toad’s back during the full moon and apply it to boils. Sure. That’s happening. I was told to give up coffee (Suuuuuuuure, I’ll get right on that one, too.). As crazy as the remedies were, I was willing to try them. Except for the toad one, that is. Everyone has their limits.

For those of you not interested in details, here is the solution in “Three Easy Steps.” (It’s really not as simple as these three steps, so those of you that are interested in ending your outbreaks for good will probably want to read on.)

  1. Start by eating a strict auto-immune Paleo diet. Robb Wolf talks about the Paleo autoimmune protocol on his website which you can read about here, otherwise, I’ll be discussing it later on in this article. Stay on this diet and do not stray for at least 30 days. Longer is better. If you can make it 60 days, that’s great. You will more than likely see a remission of your HS. You will also feel awesome and lose some weight, but that is not our goal here – it’s just a side benefit. If you do not see a remission of your HS, you will need to look closer at your diet and see what else you can remove.
  2. After you realize it’s been two months without a flare up, start adding foods back in, ONE at a time. Do this slowly. Do not introduce different foods less a week apart or you won’t be able to tell what is or isn’t affecting you. If you don’t react to the food, eat it for at least three days in a row and wait four days. For me, the boil/abscess appear the following morning after I have eaten the offending food. This is soon enough to see a connection in me, but it may be different for you. You may be able to eat the offending food once or twice before your body reacts. Don’t rush this step. Make sure you write down everything you eat. Don’t rely on your memory.
  3. Once you have found your “offending foods” don’t eat them anymore, unless the short-term gain caused by that food outweighs the weeks of pain from an outbreak. Sometimes it may. You may find the boils will heal faster if you only have your “outbreak foods” once in a blue moon. Everyone will react differently. You can test out your theory by abstaining from your triggers for 60 days and then reintroducing them. Did you break out? How many days of eating that food did it take for you to break out? Figure out how your body reacts. Then, don’t eat that food anymore.

HS Stage 3. Read this young woman’s heartbreaking story at notdying.wordpress.com

See? It’s really not that simple. Just going on an auto-immune Paleo diet is more than some people can bear. Keeping detailed records of everything you eat for months on end can be overwhelming. You can always do it ass-backwards, like me. I only suggest following these three steps because it will be the quickest way to a solution for you. I did it the opposite way around and it took three years to figure out what was causing me to flareup: potatoes.

That’s right. Potatoes. Mashed, boiled, fried, instant, baked, turned into tots. Organic or conventional, it didn’t matter. Hidden potato starch/flour in Gluten Free products. Potatoes? Really? I had been eating them my whole life and thought they were one of the safer neolithic foods, since they were natural and not causing me any digestive upset. I had also been suffering from HS since puberty, so it goes to show you things you grew up on and have been eating for over 20 years CAN be the culprit; it’s not necessarily something exotic or new in your diet. Here’s why it took me so damn long to figure out my trigger:

  1. I didn’t keep a food diary. I went Primal, cutting out all sugar, processed foods, grains and most starchy carbs, including potatoes. I saw a drastic reduction in the number of flareups I had, so much to where I thought I had the HS under control. However, I would break out every so often without a seeming cause. I followed the 80/20 rule and for the first year and a half would treat myself to potatoes, milk chocolate and even Subway sandwiches once every couple of weeks. I couldn’t see a connection and different things seemed to make me break out, while some things I thought were affecting me didn’t seem to. I wasn’t scientific at all in my approach.
  2. I made assumptions. I read that HS was connected to smoking (which I used to do) and PCOS. I had quit smoking before I got pregnant but it didn’t make a difference. Since my PCOS was caused by super-elevated insulin levels due to sugar intake, I assumed the HS was connected to sugar, too. I was able to eat dark chocolate whenever I wanted, but I seemed to flare up whenever I would treat myself to a piece (or a bar, ha) of milk chocolate or gummy candies. I wasn’t paying attention to the small bag of potato chips I would also be eating with that candy. Or the In N Out fries with my protein-style burger. Why would I? I knew potatoes were bad for my insulin, but who ever heard of potatoes causing zits? Or boils? Not me. It didn’t even show up on my radar. I chalked it up to the sugar in the potatoes, the chocolate, the candy.
  3. I was unaware of the auto-immune nature of HS. Things got more confusing when I cut out Splenda after six months on the Primal diet. Not only did I lose 10 pounds without even thinking about it, but my HS went into remission. I tried an experiment a couple months in by adding a couple packets of Splenda to my morning coffee and I broke out with a boil the next day. I was convinced it was the Splenda. I haven’t touched it since (which is a good thing) nor have I touched anything with maltodextrin in it either (the other ingredient in Splenda besides sucralose). Since I wasn’t keeping a food diary, I couldn’t see that the potatoes I had for dinner the same night as the Splenda might also be a contributing factor. Note: When I had a flare up during this time, it was different. Before I went Primal, a new boil would appear at least once a week. It would take weeks, if not months, to go away. After changing my diet, I would only break out once every month or two. The boil would only last a few days. There was not as much swelling or pain. It would subside quite quickly, wouldn’t even come to a head and didn’t leave a scar. I thought (probably correctly) that HS flareups “feed” on the inflammation caused by the offending food, and the more you put into your system, the longer the boils take to heal.
  4. I wasn’t keeping track of the food groups I was eating, for the most part. After going to AHS 2011, I stopped eating dairy. I lost more weight and felt fantastic, but didn’t really notice a difference in my digestion, skin or anything else. I added some dairy back in after 30 days but didn’t see any change. It was nice to rule out dairy as a cause, but I was still convinced that milk chocolate was affecting me someway. I went to a Hallowe’en party on October 22 of last year. The food at the party consisted of: MacDonald’s and Hallowe’en candy. I didn’t touch the burgers but I certainly ate the candy. I had 4 little boxes of Nerds, some Sweetarts, a bunch of milk chocolate and some french fries. I made sure I stayed gluten free and didn’t touch the burgers, not even the patties. The next day, I woke up with a “hangover” and a boil. Another seeming connection to milk chocolate and candy. I didn’t think about the fries. I was unaware that another food group besides wheat or dairy could even play a factor.
  5. My kid’s diet changed. They were having psoriasis attacks, which we could not seem to get under control. We had made sure that they didn’t have any wheat or dairy in their diet, but they would still break out occasionally. They had full-on allergic reactions to tomatoes – red, rosy cheeks, runny noses and hives. I checked the ingredients in some of their gluten-free products and found potato starch and/or flour in all of them. The kids would scream in pain and claw at their mouths anytime there was chili, hot pepper or even paprika in their food. I couldn’t get them to eat eggplant or bell peppers at all and then they went off potatoes completely and wouldn’t touch them. I hadn’t made a connection to the nightshade family. With a little research, I found out that tomatoes, potatoes, peppers and eggplants all belonged to the nightshade family and we immediately removed any nightshades from the kids diets. Since I didn’t have potatoes or tomatoes in the house anymore, I wasn’t eating them either.
  6. My experiments started to fail, or not produce any results. During the holiday season, I ate some milk chocolate. Nothing happened. I ate more. Nothing. Then I ate an entire Pound Plus bar of Trader Joe’s milk chocolate in 4 days. NOTHING. I got super pissed off. I ate some gummy candies. Again, nothing. I started to tempt fate (and the scale) and ate sugar in the form of milk chocolate and sour candies every day for THREE WEEKS. Still, nothing. I was trying to find the “magic number” of times I could eat this crap and not break out. Finally, I got a little zit on my chin and started to feel like crap. But the HS was no where to be seen. Occasionally, I would have a tablespoon of organic ketchup with my eggs but then I started getting canker sores a couple hours later. I asked a Nose Ear Throat specialist about it and he mentioned the words, “possible auto-immune response.” It was then that it clicked: I had had french fries at that party. I had had potatoes for dinner the same night I had tried my Splenda experiment. I hadn’t had potatoes since that Hallowe’en party and I hadn’t had an HS outbreak, either. I was getting canker sores from tomatoes. A tiny zit on my scalp after eating bell peppers. My body was reacting to nightshades, but differently than I had seen in anyone else. If I hadn’t removed nightshades from my kids diets, I never would have figured it out.

It took me three years to muddle through this mess by myself. I’m hoping that by following my “Three Easy Steps” in a slow and scientific manner you’ll be able to figure out what triggers YOUR HS in six months or less.

Robb Wolf’s Autoimmune Protocol:

Google “autoimmune disorder.” You won’t find any mentions of HS, except for some speculation about the connection on www.dailystrength.org. What you find on sites like Medline isn’t encouraging. According to them, “there is no known prevention for most autoimmune disorders…Most autoimmune diseases are chronic, but many can be controlled with treatment. Side effects of medications used to suppress the immune system can be severe. Contact your health care provider.”

They don’t have a fucking clue. It’s a good thing that most people in the Paleo community are as brilliant as hell, ’cause they’ve solved your problem.

For me, the first mention of connecting HS to autoimmunity came from the great Loren Cordain himself. You may not find it written down anywhere as he told me personally at the AHS last year but I believe he had plans to cover the topic of HS in an upcoming book. Thinking of my HS as an auto-immune response got the mental ball rolling for me and I approached combating the condition differently. To learn more about auto-immunity, check out the FAQ page at www.robbwolf.com:

“Emerging research has made clear the link between Neolithic foods (grains, legumes and dairy) and autoimmune diseases such as Lupus, Rheumatoid Arthritis, Multiple Sclerosis and a host of other less well know conditions. Many people have found significant improvements in autoimmune disease by eliminating the Neolithic foods and building a diet around nutritious Paleo options. If you suffer from an autoimmune disease we highly recommend you start a Paleo diet and let us know what your results are. To give your body its best chance to heal we recommend that you initially limit the following foods:

  • Eggs
  • Tomatoes & eggplants
  • Peppers including bell peppers and hot peppers
  • Spices such as curries, paprika, and chili powder.

Some of these otherwise Paleo-friendly foods have been shown to be problematic in individuals with autoimmune issues. We recommend you fully remove not only these foods but also all Neolithic foods (grains, breads, potatoes, beans and dairy) for at least a month to see if they pose a problem for you.”

~Robb Wolf

Notice how all the nightshades are in there? Also notice the other conditions you can slam into remission if you happen to have them? Or have a loved one who suffers? Please pass this on. I’m writing this because I want to help you and the people you love.

In the Meantime: Taking Care of Flareups

Over the years, scars will accumulate.

I personally have not found a difference with exercise, sweating, how often I shower or shave, what topical ointments or body wash I use or anything else. Lowering the temperature of my showers and only showering twice a week actually resulted in nicer hair and skin, but it didn’t stop the HS. Only getting rid of your trigger foods will do that. But how do you take care of a boil once it appears? There are so many theories out there – some people can’t take the pain anymore and squeeze and then let it scab over and then squeeze (the process can take days and leaves one hell of a scar) and let it scab over until enough pus has been released to alleviate the pressure. Others go to the doctors and have them lanced. You would think this would be the safest solution but from what I’ve heard, this can result in boils that just…don’t heal. Ever. The truth is, whether or not the boil is lanced, popped or just left to its own devices, at the end of the day it seems to take the same amount of time to heal and go away. It doesn’t seem to care what you do – unless you let it get infected. The pain of an infected abscess is about equal to the pain of one that hasn’t erupted; pick your poison. Surgery is always an option if the abscesses get bad enough – but the “after” pics I’ve seen online make me wonder which is worse. You tell me:

Painful infection happens quite often.

One good thing did come out of my original dermatologist appointment – she told me about Hibiclens. It’s an antimicrobial wash that surgeons use. The liquid she recommended turned out to be completely useless, but when I went to the store to buy it, I saw that they also had Hibistat Germicidal Hand Wipes. I picked up some of those as well. They don’t do anything to prevent a flareup, but if one does happen, they are EXTREMELY handy to have. They make the healing process go so much faster and prevent infection. They also really helped with any ingrown hairs, too. I know many people with HS also suffer from ingrown hairs, zits other places including cystic acne and clogged pores.

Since they were pretty pricey, I would take one and cut it into 4 and put the other pieces in a little Ziploc bag and use as needed. When money got tight, I would substitute regular old alcohol wipes from the first aid kit, and they also did the job. They just sting a lot more. I used either wipe at the first sign of a flareup, even before the skin broke. It seemed to help.

The other product I used (and continue to use) is coconut oil. Coconut oil is amazing stuff. It’s antibacterial, antimicrobial, antiviral and a damn good conditioner. I even use the stuff on my scalp. After I disinfected the wound, I would rub coconut oil on it. The scars seemed to fade faster and the wound healed quite quickly. Then I just started using it all over my body. I don’t use any other products at all and I have beautiful skin.

I heard once that beauty comes from the inside, so it makes sense that beautiful skin comes from what we put into ourselves. I hope this article has helped you. If you have any questions, or need further help, please comment on this post or send me an email.

Resources:

If you’re not Paleo, have never heard of the Paleo or Primal lifestyles or don’t know where to start, don’t worry. You can get all the information you need for free if you just take the time to read it:

BACK TO TOP

I NEED TO RANT A LITTLE:

It’s amazing to me that the medical community is so clueless when it comes to HS. Take breast cancer, for example. We ALL know what breast cancer is. Not that I am belittling the disease or the tenacity of its survivors, but if I have one more person ask me to donate to Breast Cancer Awareness, I am going to scream. We’re all fucking AWARE of breast cancer already. I can’t be any MORE aware of it. (Notice they never say “Give me money so we can find a CURE,” it’s always “Raise awareness!” 230,480 women in the US were expected to be diagnosed with breast cancer in the U.S. in 2011, according to www.breastcancer.org. What about the upwards of 12 MILLION people in the U.S. alone that suffer with HS? I have heard from people all over the world that are afflicted with HS. It’s not an American problem. Yet, there is no awareness for HS. No funds, no campaigns for the cure, nothing. Your doctor doesn’t even know what it is. We need to come out of the closet, people. HS may not kill you, but I am certain that people have committed suicide because of it. I know this because there have been times I have wanted to kill myself. Times I have been so ashamed of the condition of my body that I just wanted it all to end. Times when I have been so frustrated with doctors and their lack of compassion, making me feel ashamed of myself, like it’s MY FAULT, that I wanted to give up. Like I said in my previous post, I’m lucky. And realizing that I alone hold the key to my health has been incredibly empowering.

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341 Comments

  1. Thank you for your blog. I stumbled across this and did a little test with potatoes and my HS has drastically reduced it’s almost completely gone. I was having daily/weekly flareups and now maybe once a month. I think there is probably something else contributing but the main culprit for me was potatoes. Great information. My Mother has HS very bad as well but I don’t think she’s ready to start cutting things out of her diet as she’s already had to make lots of changes as a new diabetic but she’ll get there :) Thanks again.

    Reply
    • Just re-read an earlier comment by you and olive oil mayo = potato starch….crap, that’s probably what my last straw is! Sneaky little industrial food putting all sorts of crap in everything ;(

      Reply
      • YUP, it’s crazy isn’t it…

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    • When she IS ready, the diet used to control her HS will be the same one used to control her diabetes… But I understand the “too much, too soon,” situation.

      Reply
  2. I’m doing ok ever since I posted about tomatoes triggering a bad boil. I’ve avoided them since. Interestingly, it seems it’s raw tomatoes that did it to me. If I have a tiny bit of ketchup on a grass-fed burger, I seem to be fine. It was also multiple instances of eating tomatoes that particular week, I think it was 3 separate days in the same week. So that might have had something to do with it.
    I have a free wax bikini line scheduled for tomorrow at this new place in town. I’m unsure if waxing will be bad. All of my hs is in the groin area. Will waxing be a problem? I’ve never done it before; I’ve always been afraid it would cause ingrown hairs and add to the problem.
    Can’t wait for your book to come out. Thanks for all your support and advice.

    Reply
    • You’re welcome! It’s good to hear from you. I have uncovered so many answers about why something may make you flare up one week and not the next, I’m in the middle of writing that chapter so we’ll have to wait, but it certainly explains a lot… :)
      When waxing, you should have fewer problems than when shaving, but you still may encounter certain things. If you can, take some Hibistat wipes or rubbing alcohol wipes with you and as soon as the waxing is done, wipe the area and let it dry. Then, massage some coconut oil in. If I don’t do this step, I will usually have problems with ingrown hairs, as they get trapped before they can escape. Doing this seems to totally prevent the problem in me. Also make sure you don’t have any sugar or grains a couple days after the waxing. This will help prevent the skin around the hair follicle from growing too quickly and trapping the hair as well.
      The only way you’ll be able to know if the waxing will affect you is to try it and see…anything that irritates the hair follicle can result in something, but I never had an HS flare because of waxing. Good luck!

      Reply
  3. Thank you so much, Primalgirl, for all the information and talking about it.
    I had HS stage 2, with stress as a main trigger. Since I lost my job, and lot of stress with that, I am in stage 1 with hardly any outbreaks. Losing my job sucks, but the great thing is that It gave me time to discover paleo and then your story. I am now in preparing fase for going into paleo for 30 days and give up carbs, dairy and all of the bad things and never go back.
    I am convinced it will work and I will also inform the dutch HS association about all of this.
    I am so happy that we can all beat this stupid disease. And my knee will never hurt again (my main excuse when limping with outbreaks). Thank you million times and more.

    Reply
    • Yes, please tell the Dutch HS Association! I know you guys all speak English, but if they want to translate the book, they can contact me or my publisher and we’d be happy to set the process in motion.
      I used to live in Germany, right on the Dutch border. I worked in Brunssum and shopped in Sittard, Heerlen and Maastrict all the time. I sure miss it, especially the Christmas markets and the farmers markets. I really hope to go back some day. :)

      Reply
      • This blog is such a relief to read–I’ve been struggling with this for 12 years and am about to get married (next year) and am just terrified for him to see my scars (armpits and butt). I am going to try this diet and see what happens–hopefully I’ll have good news to post soon. And I’m writing this here because I lived in Maastricht! I love it there and miss it so much!!

        Reply
        • I miss the Netherlands a lot too… I can’t wait to get back over there.
          Now that you know what you’ve got, you may want to raise the subject with your fiance so that he knows what to expect. I find that when we open up and “confess” to our loved ones, they are way more accepting and loving than they are in our anxiety-driven fears. If we hide it from them, it can affect our relationship — or worst case scenario, they think we have an STD and freak out.

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  4. This post is amazing! I have this, and have had boils all over my groin, arm pits, and back. I had no idea the condition had a name. I had one boil removed off my back and the scar was so terrible I never had another one removed. I have a lot of scarring. I went gluten-free about ten years ago, and that helped, but when I went paleo/primal two months ago, the change and improvement was *dramatic*!!! The medical community is freaking USELESS, and did nothing but blame me for being fat and dirty. Even though I was showering sometimes twice day. I did find an anti-biotic cream that works, but it makes that spot on your skin permanently sun sensitive forever, so I try not to use it. Thank you for your honesty on this issue, and I look forward to more information/posts!

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  5. Hey. I stumbled across your site about 5 or so months ago. I had the most painful ‘flare-up’ on a sensitive part of my bum, just where the leg meets.. Made me sit down so slowly and omg so painful. I have had this HS for many many years, have tried antibiotics, and surgery for under my arms, (stage 3… Really bad) resorted to self lancing when it got too bad (ouch yes but worth the relief). I had to come to australia to get the correct diagnosis ironically from a scottish doctor who specialised in skin (as luck would have it!) He put me on more antibiotics and I just got sick. I gave up and just used this cream that makes it soft and self lance. The last baaad outbreak I read ur post and I cried.. I have to say thank you because I never ever thought it could be related to food. U were bang on. Potatoes and tomatoes, eggplants, chillis, capsicums. I cut all nightshades out and have been relatively painfree now since then. I could honestly kiss you. U prob have no idea what shame and self hatred I have had to endure for most of my life. I started showing symptoms at the tender age of 4. Surgery under my arms went well I have scars but I would rather that than what I had to go through. Thank you so much. I will definitely buy your book when it comes out. Xxx

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  6. Dear Primalgirl, Like everyone else writing to you thanks for “coming out” I have suffered from HS for many, many years. I’ve taken every antibotic known to man, and yes even accutane. The acne cleared up and there was great relief with HS, but continued use is out of the question for obvious reasons, I was desperate, plus my hair fell out. I’ve been using antibiotics off and on over 25 years, steroids aggrevated the condition, I did try zinc for about 18 months, but after a while, no results. My story is the same as many HS survivors, I live in the closet only out to the necessary doctors, I too suffer from PCOS. I’ve been hiding so long, it’s just a relief to be able to share. I’m definately going to modify my diet and find out what my trigger foods are I suspect, like you potatoes, and I’m praying tomatoes are not a trigger for me (I Love tomatoes) I’m starting today, with the necessary elimination of trigger foods and maybe after 90 days reintroduce some, I don’t like eggs anyway and I doubt if I will everrr eat another potatoe, fried or in a salad or chip! So Primalgirl, the DIVA AWARD goes to you for all your research and energy. Have you ever heard of a HS support group? I will be buying your book as soon as it’s available, so please let me know when that book is out! from one HSter to another.

    Reply
  7. Amazing post! This is definitely the key to find a way to help my sister recover from HS. I knew slightly of her condition, but didn’t realize the trauma that it really had on the body and mind. It’s amazing how little doctors know, or worse, turn a cheek on nutrition and quickly prescribe drugs. You’ve changed lives here, my friend, and we all thank you for it. Thank you for doing the research and experimenting on yourself. Thank you for being brave and doing something about it rather than let it keep taking you over. Thank you for doing something. Because of your actions, you are saving lives and helping people live better. I can only hope to be able to change lives in a positive way as you have, and I’m going to start with my sister. Cheers to you!

    Very Best,
    @TexasClaudia

    Reply
  8. I found your posts about HS a few days ago and started an AIP Whole30 on Sunday. I’ve been reading some different things and wanted to know what your opinion was about Macadamia nuts and fruit. I don’t eat a lot of either, a few nuts for a snack before a workout or at night when I’m craving sugar. I eat fruit rarely and usually apples, bananas or some strawberries. Have you had any feedback on whether fruit and nuts are related to breakouts?

    I have had HS for 14 years. I’m in stage 2, I was borderline stage 3 for a while, but I have spent the last year trying to clean up my diet and I think that has helped. I’ve got them in my armpits, under my breasts, around my belly button, in my groin area, on my buttocks, and all over my inner thighs. I did a Whole 30 in January/February and while I felt better, I still had new bumps show up. I have been lucky and have not had any open gaping ones for a while.

    The one thing that I have found that helps is Manuka honey on open wounds – I call it miracle honey. It helps them heal so much more quickly than usual. I use it on any cut I have anymore and have been told by a few people that I recommended it to that it helped reduce their scars too. If I have a new bump that is raised and red, I use Manuka oil. It helps draw the infection out and dry up the bump. I use a manuka honey based soap as well.

    I also use Zeeasorb powder under my breasts and around my groin area. I sweat a lot in the areas and always thought that sweat made the hair follicles more likely to break out into a HS bump. I’m debating continuing with this, but I sweat so much and I hate being stinky, so…

    Thank you so much for coming out with this. I was ready to give up on eating healthy and exercising because of a new outbreak, but I have hope again. Thank you!!!!!!!!!

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  9. crying i thank you for this; with hope i will read and follow your advice, hopefully will be able to report results back as well. scars and bandaids have been my life since my teens and no doctor has ever given me hope as your post has done. bless you.

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  10. EdJ says:

    Thank you all for all the information I have seen posted. I have had HS for over 35 years. I was not told it was HS until about 5 years ago. I have tried all the antibiotics, Accutane and draining when painfully swollen nothing has worked, just continued to get worse and more places.
    I started the Autoimmune Paleo diet 30 days ago and their seems to be a fading of most the infected areas and I have not had any new spots. When I started the diet many locations had a lot of inflammation in them and some seemed to have flared up some during this 30 days and then go back down.
    My question, is this normal and how long does it generally take to see most swelling go away. I am afraid to add anything back into my diet until I know I can tell the difference. Thanks.

    Reply
  11. I hardly know where to begin…. I found this post through a web search. I started paleo just 15 days ago. I came to Paleo, because I went gluten free and sugar free the beginning of the year. Once I passed the 2 week mark, I was became bloated mess (never been a problem in the past). Through my research, I have found that probably because of my increase in other glutenous grain (rice, corn, and especially quinoa) that my body was struggling to process. So I decided to eliminate the trouble makers using the paleo guidelines. Around day 12 of Paleo some cysts have started to crop up. I have not had any for a long time now. And I thought that maybe my body was detoxing. I’ve been getting them off and on for many years. I have never known what it was or why I had them until today, reading this article. As I read through the description of symptoms, and comments I was stunned, and actually said out loud to no one in particular, ‘That’s me!’ I didn’t know this was so common. That there is a clinical name and that it is indeed a disease. I feel mixed emotions of relief and dismay.
    I think my recent outbreak is due to the fact that I am consuming more nuts and seeds. Maybe nightshades as well, as I am consuming more of those raw. Which is sad cause I love them, and I feel my diet will be very limited, if they are eliminated as well. Regardless, I will be going forward with the autoimmune protocol.
    I just want to thank you so very much for being brave and giving this a voice, and educating us all. I am extremely grateful. I’ll be sure to update you on what I discover!

    Reply
    • Thank you!!! I joined it and have added it as a resource in the book. Looks like a great bunch of people. :)

      Reply
  12. After informing another about HS (for the millionth time) I decided it was time to look up pictures again and see if there was any “new” information on the internet. I’ve suffered for 21 years now and the flare ups are no where near as bad as they were about 5 years ago but a triple onset of sores/boils occurred this week and reminded me of the intense pain, the illness and fatigue that HS causes. Having started a new job about a month ago and coming in today feeling totally drained and in complete pain (to the point I am being vocal about it) I ended up sharing my condition. Of course another related to the boils but she only has one in the same spot so I dont know if its really HS or not. Any how I just wanted to say thank you for the “freshness” of your posts and Im REALLY looking forward to your book, attempting to join the FB group and knowing now that I need to look into the Paleo diet/nightshades. I do consume A LOT of potatoes, had no clue this could be a cause to the flare ups other than the norms. Again, thank you! I, too, wish there was more awareness and support for HS. I never thought I would look so forward to Menopause.

    Reply
    • Ah darlin, it doesn’t necessarily get better with menopause. That is yet another myth. :( But we’ll get you squared away long before that so don’t worry. Thank you so much for speaking up and being vocal, that really takes guts. But it’s what we need if there is going to be any awareness at all. :)

      Reply
  13. I’ve had HS for about 13 years, but was diagnosed 4 years ago. I was disheartened when the doctor told me there was no cure. I basically threw my hands up and gave up. I recently came across your site and have hope again. Right now, I have 5 holes on my armpit which is always draining pus. The doctor told me that these holes would never close, and that has me depressed. Did your HS produce these holes and if they did, did they ever heal? I’m also considering going in the antibiotics for a few months alongside the Paleo diet to see if the infection subsides. Do you have an opinion on that? This disease is so depressing. I can’t do this anymore. I need a solution. I have two small kids and I can’t live the life I want with them because I’m constantly concerned or limited with my HS.

    Thank you, thank you for your site. I would have never known that there was something that could send it into remission. I agree with you on that there needs to be awareness. I wish I could scream it out to the world, but reality is that I am ashamed of what I have. Thank you for reading my comment and I look forward to your opinion.
    PS, can’t wait for your book to come out. I can’t find substantial information on this subject in any book.

    Reply
    • Just submitted the manuscript to the publisher this morning! :) Won’t be long now.
      No, unfortunately, I didn’t have any holes that never closed, but I was in Stage I for most of the time, and then moved into severe Stage II for a couple years. My HS only affected my hair follicles. Since your doctor has not been able to help you, before you get depressed ask yourself if they really know what they’re talking about when they say those holes will never close. Something tells me they don’t really know what they’re talking about. It sounds like you have the form of HS that affects your sweat glands, but I can’t tell from your description alone.
      I do not suggest antibiotics unless you have an active infection, but I cannot make that decision for you. Just be aware that antibiotics do not work for HS.
      Please don’t be ashamed. Is someone ashamed if they get Lupus? Or Hashimoto’s? Or Cancer?!? No, they are not ashamed. They may be saddened, but the strong ones will rise up and fight and regain their health.

      Reply
  14. Wow!!! I was googling info on painful knots under your armpit and stumbled across this. I am a registered nurse and have NEVER heard of or seen anything like this. There definitely needs to be awareness of HS to help find a control or cure! I can’t imagine how painful that must be. Good luck with your book, and God bless you all who have to deal with this!!!

    Reply
  15. Hi, thanks for your post it has been so helpful. As you now know it is the nightshades that affect you do u now eat dairy n wheat ?

    Reply
    • No, I will never eat wheat again (it is also a trigger to a lesser extent). I do have small amounts of dairy like cheese and butter but NO milk.

      Reply
  16. Thank you, is it possible to have your email address incase i have any further questions ?

    Reply
    • If you click on the “contact me” tab at the top of the page, it will send me an email. :)

      Reply
  17. hi tara, i want some suggestion about paleo diet, i live in turkey first month of paleo diet i have diffucilty in find eating food. no bread no dairy no wheat… it is hard for me and i dont know what can i do ?… what did you do this process what did you eat for not be hungry ? please help me and thank you everything

    Reply
  18. Can my triger be a beer?

    Reply
    • You already found me on Facebook, but for those of you that haven’t, YES beer can be a trigger. First off, it’s made from wheat. It contains yeast. And barley. And alcohol. All of those things can be triggers. If you suspect that beer is an issue, I suggest getting rid of ALL wheat and gluten, and possibly even yeast. And stop drinking for a while to see how you do. Good luck!

      Reply
  19. Primalgirl, i have been dealing w/ HS since i was 12years old iam now 22. I have been taking the antibiotic Minocycline since Dec 2012 it helped A LOT!!!but unforunatly it has killed my immune system and gave tons of side effects..I need something that works. I am at level 3 (say the derm) of this desease and im tied..i need to contact u personally i have read both your posts so far and u have my full attention but im a little confused..thanks for opening up.

    Reply
    • I’ll be offering private HS consultations to people once they’ve read the book. I think I cover most questions and problems that people with HS have and would like to give you all the chance to figure things out on your own, as private consultations can get pretty expensive. However, once you’ve finished reading the book, I can definitely help you out if you are still having problems, or if you need some specific guidance. :)

      Reply
  20. thank you but i’m dreadfully afraid of doing paleo! This weekend I got probalby one of my worst flare ups right in between my legs and it’s quite large. I have told my husband about it but he refuses to believe me :( My dr recently told me what I had. My groin area is completely destroyed :( I dont know how I got this or why I was chosen, but I’m glad to know there are others out there.

    Reply
  21. OMG! I think I have this! I’ve never told ANYONE about the painful little lumps I get on my groin, thighs, & sometimes underarms or rear. I stumbled onto this since I went Primal/Paleo starting in January but dismissed it since mine was so infrequent. Funny thing, I have had it (stage 1) I think off & on for at least 10-15 years (I’m 30) & since going paleo this year I’m seeing MORE flare ups! In the last month alone, I have had 3 seperate lumps appear (1 painful 1 just last week), when I used to only see 1 here or there a couple times a year. The only thing I can equate it to is eggs. I’ve always been a big fan of eggs, but since going paleo, I now eat them a lot more & a lot more often, like daily. I have a source for pastured eggs & chicken & since they’re a favorite food & cheap, I make good use of them. I’m going to try eliminating them & see if that helps & if not I’ll do the autoimmune protocol & see if that helps. I desperately don’t want to progress to a worse stage! :-(

    Reply
  22. Thank you. I have been struggling for years with this and my doctor was clueless. Glad I am not the only one.

    Reply
  23. Thank you for putting this site together. I have been searching all over the net for an answer and I think I have found the connection I am looking for. First off, a quote “HS may not kill you, but I am certain that people have committed suicide because of it.” Just some info about this quote that I have ran across, I have ran across a few sites that state that people with HS are at a higher risk for skin cancer. I wish I had saved the link, I did not. Anyhow, this, with the usual quote that HS is prevalent in people between the ages of puberty and their 40′s had me freaked out! The sites never seem to state what happens after the age of 40 or why there is a decrease in episodes after 40! Do we all just fall off the earth? Do we all die of skin cancer (what I was freaked out about)? Does HS just naturally go away at 40? I think that I have found the answer on this site, which brings me some peace to heart: It was mentioned that women tended to not have as much of an issue after menopause. While aspects of menopause and what women go through during that time is something that I can only begin to understand (I’m a guy), it helped me understand what the decrease in HS cases after 40 might be associated with. While I still need to be observant for any skin cancer, I am no longer am freaked out about it!

    Reply
    • Hey Dispatcher,
      I’m pretty sure there isn’t a link between HS and skin cancer. If you search for anything and a link to HS, you can find it online. People aren’t taking the autoimmune nature of HS into account and don’t realize they’re being attacked on more than one front. If you’re afraid of skin cancer, I suggest taking a Vitamin D3 supplement and making sure your blood levels are adequate — Vitamin D3 deficiency is absolutely linked to skin cancer, and also plays a large role in autoimmune conditions. :)
      HS doesn’t necessarily get better after 40, or even after menopause for women. It just seems to start on average around the age of 23. If you don’t have it by your 40s, chances are you never will. That’s all. I haven’t been to the site you’re talking about, but I don’t think they really get it or have all the facts. I hope this helps to quell some of your fears. You can totally get rid of HS by finding your triggers and eating a Primal diet.

      Reply
      • As a post menopausal woman, I can attest to the fact that it didn’t help the HS symptoms at all. The ONLY thing that has helped is a Paleo diet, and the auto-immune (AI) protocol. So far, in 10 months, only two unintentional gluten exposures have caused a flare-up. However, because I have other AI issues I stay on the AI Protocol.

        Reply
      • Just wanted to say that I noticed a sinus tract at age 59 with no other outward signs until after I had surgery to remove the tract then the hard lumps appeared

        Reply
  24. Thank you so much for being so open about this. Your information here has really helped me in my search for an answer to what multiple Dr.’s keep telling me is just “an ingrown hair or acne.” If HS is what I have, then I’m fortunate not to be too severe, with you advise here, I hope to get to the root cause before it gets worse. Thanks!

    Reply
  25. I am thankful for finding your blog… I have suffered with HS for 17 years, I have had surgery 4 times, which includes a surgery at 8 months pregnant. My first operation was at 16 and it seemed to actually spread the condition to my groin area. I have never seen improvement and found the 4 years of antibiotic treatment a cause of a deeper problem with systemic yeast and no improvement to the HS. After needing emergency surgery for the botched initial surgery in 2004 I stopped seeking treatment since doctors always treated me like a freak of nature. I was a smoker for 15 years and quit… no improvement, I quit pop of any kind… no improvement… I quit sugar, no improvement, I quit wheat… No improvement. The only thing I have left to quit are potatoes! Much like you I thought it was a safe choice. I ate potatoes every day for a month and now after reading your posts realize that they may be at fault for the outrageous outbreak on my face (deep cystic that turns purple and has the same symptoms as HS). It is also possible to get HS in your earlobes just as a note. Mine started on my tailbone and in my ears and progressed from there. I am now 32 and my facial symptoms are worse than they ever have been.

    Reply
    • I would cut all nightshades out of your diet, based on what you’ve said. I get HS on my face when the following happens: 1) I’m in the progesterone dominant part of my cycle, 2) I eat lots of high glycemic foods and 3) I sneak a nightshade in there. Just one of those things on their own isn’t enough for me to flare up, but when all 3 collide, watch out. Peppers and hot peppers are particularly bad, followed by tomatoes but potatoes always cause flare ups elsewhere. O_o
      You may want to look out for fructose and yeast-containing foods, too. I’m sorry your surgeries went so poorly, unfortunately, that’s not the first time I’ve heard that. :(

      Reply
  26. Hi
    First i wanna thank You so much for this website. Have HS from couple years now, had no problem with diagnose, but treatment included surgery 4x times its a story for good book . Anyway my hs coming from milk, well all diary and smoking. After give up diary and smoking (i dont think its nicotine im pretty sure its some kind of shit added to cigarettes coz im using electronic cigarette right now wich is nicotine in liquid) my HS is remission. Needed nearly 5 months to clear up. Got scars of corz and during last 3 months had couple small bumps but 50x smaller than before and much much less painful( i smoked couple times in that times and couldn’t resist coffe with milk). Right now all bumps go away and i feel so great. Thank You very much You gave me good direction in my research. I’m pretty sure that big farma knows exactly how hs should be treated, reason why they don’t help people is pretty clear for me = MONEY. I can 100% confirm that antibiotics, steroids, lancing etc are USELESS. Surgery gonna help for while but if you don’t wanna change your diet and life style is only short time relief (3 months in my case including 1 month healing after surgery). Peace

    Reply
  27. I am reading this as I have 3 painful boils under my breasts that I’ve had for 2 YEARS. I am hoping stumbling upon this will change my life as I am at my witts end with this painful embarassing mess. I am mentally preparing myself for a life without dairy and potatoes as this is completely inhumane to me right now. But I know my body will thank me. And Thank you for your courage and help with this lifestyle

    Reply
  28. How often must you use the wipes and coconut oil? Is it daily or only when you have flare ups? Is it refined or unrefined coconut oil? What is your experience with tea tree oil? Thanks. PS my problem is in the groin area.

    Reply
    • I use the coconut oil instead of moisturizer. There isn’t a schedule, just when I need it. It helps to soften the boils when they’ve drained and are healing. I also used tea tree oil but to be honest, didn’t find it really did anything. Of course I never got an infection, so maybe it helped there…

      Reply
  29. How often must you use the wipes and coconut oil? Is it daily or only when you have flare ups? Is it refined or unrefined coconut oil? What is your experience with tea tree oil? Thanks.

    Reply
    • Oh, and it’s the extra virgin coconut oil.

      Reply
  30. Hi, thank you for these posts. I too have been battling with HS for yrs. I’m 29, and like you mine started in my early teens and got to the point where it was debilitating. many doctors didn’t know what to tell me. I got similar advice about shaving, showering, cotton underwear. Bogus stuff….But then I found a plastic surgeon (go figure) in NYC who knew all about HS and I thank God I found him. For me surgery made a HUGE difference. I had surgery on both underarms and I have NO regrets. They extracted the disease and removed all the hair bearing skin. The scars are not that bad. I haven’t had any boils under my arms since. I’ve also had two surgeries in the groin area… Vaginally it worked really well they were able to remove a lot of the hair bearing skin. however anally, I still have flare ups. They have been manageable until recently, like the past three weeks or so. ( and my last surgery was in 2007, so it’s been a while) So I found myself back online for HS help. I’m not at the point where I need surgery again, so I was looking for a healthy way to recover and I found your blog. It’s very helpful. I plan to begin a food diary and try doing the paleo diet and find my triggers. thanks again

    Reply
  31. I am an HS sufferer, and am so encouraged and excited by this information. I go to a dermatologist on a regular basis, and have been getting corticosteroid injections in the active bumps and boils. While this helps, I also have several holes under my armpits that just don’t close. They are like little pin holes in my skin and constantly drain. I am at the beginning of Stage II and my doctor had just mentioned starting shots of Humira or Enbrel. She has been mentioning this for the past 6 months and I keep putting her off because I just didn’t feel in my gut that these shots were going to be a good thing. If I can cut out potatoes and milk and see some improvement, I’ll be thrilled.

    Reply
  32. I am doing the 30 day challenge to find my trigger I’m half way through my process. I had surgery on one of my underarms to remove one lesion that was under my skin for a long time and I am so glad I found your blog. I am trying to find out what my food trigger is so I don’t get it in other parts of my body as well.

    Reply
  33. My cause of flareups is gluten. Three months after I went gluten free I had no cysts…after years of boils, lances, and even surgery for three cysts on my pantyline( that lasted for a year without coming to head). I still occasionally get a random cyst…maybe six a year…but it is usually from an accidental gluten intake. I am pregnant now and have no cysts even with eating gluten…sometimes all I can get down is saltines…but I think the gluten makes my nausea worse. Did you notice anything about and remission in your research?

    Reply
    • According to medical literature, there is no cure for HS and its impossible to go into remission. Of course, the only treatments they’re looking at are pharmaceutical. Those of us that are in remission because of changes in diet know that HS is completely avoidable.
      I’m not surprised that you’re in remission while pregnant, even though you’re eating gluten. My HS got better while I was pregnant but I still had the occasional flare. There aren’t nearly as many testosterone surges during pregnancy, even though you’ve got lots of progesterone. Enjoy the break! I hope this answered your question??

      Reply
      • Can I go on the paleo diet if I am 7 months pregnant?

        Reply
        • You’d have to talk to your doctor about that. I don’t see why any doctor wouldn’t advise eating whole, natural foods and cutting down on sugar during pregnancy, but I doubt you’d find one that would say cutting out grains and dairy is smart. Please check out http://www.primalparent.com – Peggy has just written a book called Primal Pregnancy that will answer all your questions. :)

          Reply
  34. So… This just changed my entire life. I have been primal (off and on) for the last 3 years and definitely noticed a difference in my outbreaks (I have always just called them boils) when I was eating well. This week I have had three THREE on my inner thighs and they are just persistent and I am in so much pain with each step I take. I am feeling very insecure because my partners (regardless of how much they *don’t care* or *Don’t notice*) I feel will find me less attractive, especially sexually.

    I could go on and on about my curiosities and other issues… but honestly I think now what I need to do is take action and get this under control.

    Thank you so much! I have read your blog OFTEN but … somehow… never saw these posts. I appreciate it so much. Honestly, to have a name, and to see pictures of exactly what I am experiencing is a very freeing feeling.

    I think I have my next blog post planned :) My reactions to this one and my experiment and progress. Thank you.

    Manda

    Reply
  35. I have had more than one doctor tell me what I had, but they had different reasons for the cause. At least two of these doctors very sadly looked at me and stated that they were glad they were not me. That did nothing for me except piss me off. At one consultation with a plastic surgeon, he said that I should stop smoking (I had), lose weight (I had lost 50 lbs.) and shower more (seriously??!). He told me that at least 5 times during the consult. I finally had enough and told him what I have been doing. It had no effect. I am tired of people looking at me and making judgments about what I am doing. I have had HS since around 15 years old. Of course we didn’t know that is what it was. I had surgery three times when I was 19 for pilonidal cyst. I suffered from boils on my rear even in prepuberty. I had infected ingrown hair under my arms that left terrible scars and in my pubic hair that left craters lasting what seemed like forever. At the present time I am receiving infusions once a month of Remicaid. This has helped keep my outbreaks to a minimum. When I frist started receiving the Remicaid, I was literally on bedrest 20 hours a day. I could not sit, stand or lie without pain. I spent most of my life sleeping through the pain. I am going to try the Paleo diet. I would like to end being tethered to an IV.

    Reply
  36. ty for this info it has made my day i had figured out that potatoes and tomatoes is my trigger after reading this now im delighted to start keeping them out of my diet has i was still have bags of crisps and frys thinking that diet couldnt be the cause but wasnt i wrong i also drink kangen water which is a big help to me ty again take care looking forward to getting your book xx

    Reply
  37. Another HS sufferer here, 35 years old… still looking for “the cure.” So glad I found you and I cannot wait until your book. Thank you for shedding light on this. I am so glad I am not alone in this. My journey shall continue.

    Reply
  38. I can’t believe what i a reading.My youngest daughter has been suffering with this mostly just bumps under her armpit but now they are under both. She also has PCOCS with terrible chin hairs.I had her tested at the DRS for this and they came up nil. I have an auto immune disorder so i was reading your blog and when i saw the entry for this i didnt no what it was. Thank God i was curious.I just want to cry.If we dont do something about this now it is just going to get worse.I can never thank you enough

    Reply
    • You are so welcome Suzanne. It’s because of people like your daughter that I decided to come out about this. The book will be very helpful when it comes out but you’ll have to wait a couple months for that. It will also help with the PCOS. I can get you started if you would like private consultations in the meantime. Just click on the “Consultations” page and send me your info. And something to keep in mind:
      1. It doesn’t ALWAYS get worse. It can get better, and even go away completely.
      2. You are now armed with a direction that is natural and that works. It will be free of medications, surgery and wacky home remedies.
      3. Your daughter is extremely lucky that she has a mother that a) knows about this and b) cares.
      4. Most of the changes you’ll need to make for the HS will also help get rid of the PCOS. Two birds with one stone and all that.

      Please don’t cry. You will now be able to help your daughter, where doctors could not.

      Reply
  39. Thank you for posting this very helpfull blog!

    I’ve recently developed HS this year (24yrs old) I am getting it in my armpits only though. I assumed it was maybe ingrown hairs followed by pimples but when it didn’t react or look the same I started to get suspicious. The second time I got them I started to look them up and finally told my sister, who asked around for me too. I had found stories about HS and some preventatives. One I tried was just to stop using deodorant right away and try tea tree oil, which worked for me but the second time got less effective.

    I did notice that I had no flare ups when I went on the HCG diet. I’m by no means overweight but I have no portian control. The HCG diet is quite similar to the paleo diet but with some difference. I went off it because it’s hard to keep a strict low calorie (1200 for me) and not be always tired.

    Finding your blog has definitely opened my eyes to testing out certain foods to help alleviate my HS. I really hope it’s not tomatoes since I work in an Italian restaurant! Thank you ever so much for giving me a head start on how to prevent my embarrassment and long sleeves shirt wearing in the summer time!

    -Bella

    Thank you Bella, and good luck with getting this under control. If you had some luck on the HCG diet, I think you’ll find autoimmune Paleo is going to be the ticket.

    Reply
    • Bella, I had the same experience on HCG, I lost a lot of weight (which cut down on the friction of rubbing back and forth limbs) and of course all the nightshade was automatically cut out too.

      Reply
  40. Wow! Thank you so much for sharing! I stumbled upon your blog as I am trying to figure out ways to support my thyroid issues and I recently eliminated gluten, grains, dairy, soy, coffee, alcohol, beans. After reading your blog regarding HS I started to eliminate nightshades as well. In August I am going to follow autoimmune protocol. I now have hope that HS can go into remission. I cannot thank you enough!!! I have lived with shame since my teens. Thank you! Thank you! Thank you!

    Reply
  41. Just a note on the surgery option… I had the wide excision of both inner thighs done in November of 2011 and the recovery was fairly easy, but very uncomfortable and ugly. I thought that I was in the clear… then I deployed again from Apr-Oct of 2012. In the beginning of May 2012 the abscesses were back just as severe as before only now they have spread lower on my thighs… this is incredibly embarrassing and painful especially in uniform. I just thought it was something I was stuck with and the doctors have pretty much told.me the same. Thank you for posting this information. Its amazing to have hope of being able to control this. I can’t wait to try out the Primal/paleo approach!

    We’re hearing more and more reports from people who had have surgery and have had their HS reoccur, often in the same area. Most of these surgeries are not being done properly. That being said, you still have about an 85% chance of reoccurrence in the same spot with any surgery for HS. I’m sorry you had to go through this. My book, The Hidden Plague, will be available this fall from Primal Blueprint Publishing and on Amazon. It goes into depth on all the factors involved in HS, so you can get rid of it forever. In the meantime, starting with a Primal/paleo diet is definitely the way to go!

    Reply
  42. Thank you so much for this article. I’ve been on the Primal fence for over a year now. I am so self conscious about the boil on my inner thigh I could cry. I can’t wear clothes comfortably, help maintain our household, or play with my kids! I’ve thought for a while now that diet was affecting my issues… Your words are pretty much the final say on why I really need to just get off the damn fence already and fully commit to be primal! What the hell am I waiting for?!?!?!?!?!!

    Thanks again.

    You are very welcome! I’m not sure what you’re waiting for either. Go for it!

    Reply
  43. I’m eagerly awaiting your book. I check your site very week hoping to see a release date. I wrote in an earlier post about my condition. I’ve tried to start the paleo diet several times, although very challenging, I will continue to try. I’ll get it at some point. I’ve had my condition for some time and as horribly annoying it is, I guess I’ve grown too used to it. However lately I started getting it under my arm and it’s been crazy painful. I had at one point 7 open lesions and after using coconut oil 5 of the lesions closed but it took months. One dermatologist told me my holes would never close. I can’t say she is an idiot, I just think these dr are so in the dark about this condition. I know how stupid the following statement sounds, but I think I purposely sabotage my diet because I’m afraid to learn that I won’t benefit from it. I feel like I hold on to the hope of it working. If it doesn’t help me, I think I will just die because that means nothing will help. I look at pics on the web and I can’t bare to go through that. Although i have lesions, i keep them fairly clean and they look nowhere as bad as the pics on the websites. I’m afraid though that one day they will be that awful. But I hold on to the hope and I hope to have the will power to stick to this diet. Anyway, this is just me venting and letting it all out. I don’t tell anyone about my condition. My husband is the only one that knows and the poor guy is so worried about me, that I don’t tell him how I really feel. Thank you once again for creating this book. I look forward to reading it. Lots of hugs to all my fellow HS sufferers.

    I just found out that the book is going to press mid-September. Not much longer now! I completely understand the self-sabotage. I did that for years when it came to weight loss. I was afraid to learn that the power to change my health really lay with me the whole time, and not with the doctors, or medications, or fitness industry. It meant that not only was I the actual cause of my problem, but that only I could change it. That meant work and facing the reasons I overate and binged on sugar in the first place. Not fun to do that kind of work on yourself, but very liberating when you come out on the other side.

    Reply
  44. I have tried EVERYTHING, even surgery. In recent months, I have done more research into diet and allergies. I have been a lifelong sufferer of eczema as well, which is what spurred my interest. My husband and I watched the documentary “Fat, Sick, and Nearly Dead” and decided we should make some major diet changes to detox our bodies and find out if any health issues improved. The man who made the documentary suffered from autoimmune skin rashes which disappeared once he completed his 60 day detox. This is what prompted me to look into HS and its possible connection as an autoimmune disorder, something I had suspected for years but never found any research to support it. I had given up on ever finding anything that would help relieve the pain. I haven’t researched HS since my surgery. The surgery provided temporary relief, but my HS came back in full force. It was so bad, that in 2008 my labor was induced a week early due to the painful lesions. Today is the the first time I have looked at HS info in years and I came across your blog immediately. It is all beginning to make sense now. I’m realizing that my suspicions about my diet are probably right and I cannot wait to begin this process to find the cause. Thank you so much for sharing your experience! There might still be a light at the end of the tunnel!!

    Reply
  45. Thank you! A million times Thank you! You have changed my life – for the past 20 years, I have experienced manifestations of HS. I learned the name of this disease in 2004 when I miscarried – the doctor knew what it was but had no information about what to do about it. A few years later, I discovered Earth Clinic and learned about taking turmeric to ease the inflammation. Then I stumbled upon your post in late July 2013 and read about nightshade vegetables.

    On August 1st, I cut out all nightshade vegetables (I had already eliminated potatoes for Paleo) from my diet. It is now August 7th and there is already a tremendous difference in my skin.

    Now, people that probably didn’t want to know have been told about my skin condition and the fact that it is now getting better due to your post. I’m telling everyone!!

    Again, thank you thank you thank you!!!!

    Reply
    • What great news, I’m super thrilled for you. :) And thank you so much for spreading awareness.

      Reply
  46. I only found out in the last 6 months what I had was HS. My regular doctor kept trying to blame my weight gain on it (which is reverse my weight gain was caused because it was so painful to workout I would start and stop and then eat to comfort myself), or simply state that these boils and absences can happen to anyone. When I finally insisted on being referred to a dermatologist after my worst absence almost caused blood poisoning she identified it immediately. I was put on Bactrim, HIbiclense, and Clindamicin. When I went back a month later I was completely cleared up. It wasn’t until your blog that I realized it was because I had started the Paleo diet the same time I started my treatment. When I started running this summer (and discontinued Paleo) I had the worst flare-up. I was crying it was so painful. The doctor told me to increase the Bactrim, which only seemed to make it worse. I saw your blog and said I’ll take a leap and try it her way. I stopped treatment and cut out all Nightshde. Once a week I clean with the Hibiclense and after I apply coconut oil and it’s been less than a week and it’s completely gone!!! I have never had it clear up this quickly and stay gone. I too now use the coconut oil all over now. It cured my cracked feet and I get compliments on my glowing skin! Thank you so much for blogging about your experience. I’ve been able to convince my husband to go on Paleo with me now and I’m excited to be running again!!!

    Reply
  47. Thank you so much for voicing your knowledge, research & personal stories with us. I am 28yrs old and have been having the cysts in my genital area & armpits for about 6yrs but was just recently diagnosed with HS. I wen’t Gluten Free a few years back because of chronic Migraines but recently haven’t been keeping up with it. I would say my HS is still Stage 1 but knowing that it doesn’t go away & family history I know it could get worse at any time. My sister also suffers from 5 auto-immune diseases so I know that HS is probably just the beginning for me & how important diet/nutrition is for helping. I look forward to your book but in the mean time I have two questions.

    1.) I am currently on Solodyn (minocycline) to help with the abysses, do you recommend getting off them when you start Paleo so you know that is what is working & not the actual prescriptions?

    2.) How do you do such a strict diet when your spouse & children don’t want to participate? That was another reason I came off the gluten free because it was just too hard to make separate meals or eat out. I just want to do it right & not stop/start so I can get to the bottom of HS. I guess I am just worried that I don’t have strong enough self discipline to do paleo.

    Reply
    • Hi, so first off, I can’t tell you whether or not to stop taking medication your doctor prescribed. That is going to have to be a personal decision you make. I suggest reading the book first, and then deciding whether or not they are helpful for you. I CAN tell you that antibiotics are not effective for most types of HS long term.
      As for diet and family, I’m the one that does the grocery shopping and the cooking. They eat what I make. I’m lucky my kids are still young and my husband is a disaster in the kitchen – I have complete control. When we’re out, it’s another matter. Then, they get whatever they want and I make the best choices I can. I decided not to put certain things in my mouth anymore because of my family — I will be sick and miserable if I don’t eat this way, and I don’t want my kids to have a sick and miserable mom. It makes those tough decisions a little easier. :)

      Reply
      • Thanks so much for the response! Can’t wait for the book. Best of luck :)

        Reply
  48. I have only recently been diagnosed in the past week after having painful lumps under my arms for about a month. I went to my GP and was lucky she knew what it was straight away. She’s put me on keflex, so hopefully that helps. I’ve also been using tea tree oil and lemon juice, and have stopped eating potatoes! I’m so scared for what the future holds but hopefully changing my diet to paleo will work as well as it did for you! Thanks so much for the article :)

    Reply
  49. Thanks so much for posting this. I, too, have struggled with this on my inner thighs (and sometimes on the nether-regions themselves) since I was about 13. I can’t tell you how many doctors I went to, and they diagnosed it as everything from “shaving irritation” (I’d never shaved down there at the time) to “folliculitis” to “um, little infections,” to “cystic acne on your legs.” I was told all of the same things you were about washing with antibacterial soap, given oral and topical antibiotics, and send on my way. None of that made a difference in the long term. It was only in the last couple of years and the invention of Google that I found out what it really is. And like you, I’ve noticed a striking difference when I eat really clean. I currently have a whopper on my right inner thigh, but I haven’t been paying attention to food at all lately–I got lazy, and thought I was cured.

    I’ve also started really exploring the mind-body connection. When you think about it, all autoimmune diseases are literally our bodies attacking themselves. I’ve started monitoring my thoughts, how my self-talk is making me feel, and also trying to be as positive and nice to myself as I can. I have high hopes that this will fix the cystic acne on my face, the migraines I know I give myself, and the lovely HS on my thighs. We have to truly love ourselves to be healthy…it’s not easy, but I think it’s every bit as important as diet and exercise.

    Anyway, thanks again for sharing your story, and know that you and everyone here is SO not alone. I even had one gyno tell me that it’s “really, really common.”

    Reply
  50. Thanks so much for your blog. Since I was 17 years old, my health has just gone down hill. High school I was told that I needed to gain weight, well 50lbs later, and my doctor suggested I lose some. A bit before my 18th birthday I started developing these lumps in my armpits, they would grow to the size of a marble, burst, and leak pus all over my shirt for a day or two. They would slowly go down but never fully heal, and leave red marks and open wounds. They would scare the crud out of me, I thought I was dying. I finally gained the courage to get them checked out FIVE years later. The doctor didn’t seem to be too surprised and said it was normal and said it had to do with my menstrual cycle. About two years ago, I started getting them down in my groin. Never as big, but definitely more frequent and they leave dark marks and sometimes ditches in my skin. My left armpit is scarred over so many times that I can’t tell if I have a bump there or not, which is what scares me. I finally scheduled a doctors appointment for Friday, scared to death I will find out I have a terminal illness, but I have been so sick about it mentally and physically these past few days that I decided I needed some peace of mind. I pray that it’s something that I can manage. After reading your blog, I felt a little bit at ease about this. If this can be solved with just changing my *terrible* diet, then I will do it. I will do anything at this point to feel healthy again! I appreciate all the tips and tricks, the comments from other people like you (maybe us, after my doctors appointment?) and hopefully one day there will be a cure for this somehow overlooked but serious disease!

    THank you for your story Jessica. There is hope, hang in there.

    Reply
  51. Oh. My. God. I have never read anything that made so much sense for this! I’m battling a flare-up right now, and I just want to hide!
    I’m sore all over, because not only do these boils not want to heal, but neither do the mosquito bites, or the scrapes on my foot! My whole body hurts!
    I’m going to research this whole Paleo diet and see what I can do to make this happen! THANK YOU SO MUCH!

    Reply
  52. IHello everyone my Name is Latriece Dupree i was diagnosed last year ….but my first flare up was back in 2008 ….And the crazy thing is it didnt come back til 2011…I keep my house very clean…my body especially i really dont eat much…..i dont drink..i smoke ……I had a minor sugery …last year on my left armpit …although both armpits swell drastically..i dont get too many on my inner thighs ..small bumps every now and then…but now i have one up under my stomach right on the linning …i dont know what too do somebody please …

    Reply
  53. I might be sensitive to nightshades, but I think it is the high copper amounts in potatoes that I am most sensitive to. I was silly enough to go on a potato diet ( http://freetheanimal.com/2012/11/the-potato-diet-hack-observations.html ) and had a very bad reaction (excessive menstrual bleeding for weeks due to copper toxicity leading to zinc deficiency). I took zinc and the bleeding stopped immediately.

    I should have learned my lesson, but then later started taking potato starch for the resistant starch (also at Free the Animal – lol, I’m not extremely bright sometimes!) and developed a HS bump (very mild – I haven’t had one since I went Paleo) I wondered if it was also copper toxicity and found this which states that zinc salts are a new therapeutic approach to HS.: http://www.ncbi.nlm.nih.gov/pubmed/17460404

    I am cutting out copper in the forms of potatoes (never again) and now I’m going to replace coffee with green tea.

    Reply
  54. Hi Tara! I first want to thank you for expressing your challenges, trials and tribulations with HS so publicly, and for sharing your success story with so many who are having the same struggles as you. I am so eager to read your book after learning this much from your blog posts. Can you tell me when it will be available for purchase?

    Again, thank you so much!

    The book is available for preorder on Amazon right now, and will ship on December 1st. You can find it here: The Hidden Plague. You can also get a copy a little earlier on PrimalBlueprint.com.

    Reply
  55. I have just come back home after travelling overseas for 3 months. I was diagnosed with HS just before I left (mid August). I had absolutely NO lumps overseas, nothing at all, I was so happy. (FYI – I was not eating paleo at all). Then, the minute I set foot back in Australia, the flare ups begin. The only thing I can think of is the water. Has anyone else experienced this?!

    Reply
    • Hi Please read my post on primal girl about environment and HS. I would like to hear more about your symptoms, etc. My 12 year old daughter has it.

      Reply
      • Well, lfinks123, my HS began to flare up in about June of this year. I had never had anything of the sort before, although they do say the average age that HS can present itself is 23, which I am exactly. They also say it is more prevalent in people who have had acne, which I had as a teenager, although obviously that doesn’t apply to your daughter. When HS started in June, I had countless lumps under both arms, they were extremely painful and they just kept multiplying on top of and around each other. I then did some research online and diagnosed myself with HS, which my doctor confirmed. I was lucky she knew what it was straight away. She put me on antibiotics for 2 weeks and they seemed to go away. As soon as the course finished, they came straight back. However, tea tree oil seemed to really help, as did eliminating potatoes from my diet. I left Australia in August for 3 months in Europe/UK. I had absolutely NO lumps whatsoever. Nothing at all. I arrived home Thursday, and felt 2 lumps under 1 arm yesterday. I put tea tree oil on them straight away to try and nip them in the bud, and so far, I think it has worked. Fingers crossed it stays that way. As for environmental factors, I have heard another person say that their acne flares up only in Australia, so maybe there is something in the water here that I could be allergic to (I have hayfever all year round and am also allergic to many raw foods, so it wouldn’t surprise me). If you haven’t tried tea tree oil, I would definitely give it a go. If she eats potatoes, try and get her off them too as Tara has said. I hope this helps, and I hope your daughter gets better soon :) It really is a horrible condition.

        Reply
        • Thank you for your reply. She only gets in her groin area. Was much worse for her before going gluten free, I highly recommend you try that. Yes it is difficult but worth the effort. I know Tara and other people find remission via a paleo diet but that is just too restrictive for my daughter at her young age. I am still thinking there must be an unrecognized environmental factor/trigger. Could be water? Mold? She has no known allergies, but did start w/food sensitivities (when she eats gluten she gets terrible stomach cramps, diarrhea, etc. ) Has tested negative for celiac but that is not always accurate. Do you have stomach issues? Have you ever been tested for celiac disease? I feel like we are all trying to solve a huge mystery, the more we can work together maybe one day we can figure it out. Take care!

          Reply
  56. My young daughter has HS. We have been controlling via diet, mostly gluten free. I had noticed that when she went to sleep away camp over the summer, she came home and had NO visible marking from HS. Everything had disappeared including old scars. Since being home, she still has lumps that just wont’ go away. I too tend to think more environment could be a cause? I knwo it sounds crazy but I am curious if anyone else has noticed this…..

    Reply
    • Hi Everyone, i am new to this site. I have been dealing with HS for 12 Years but recently the past year has been extremely worse. I have started on a Autoimmune Paleo diet and have seen a lot of improvement, I am curious if Almond butter is allowed? This is a food I really rely on and eat with apples, pears, bananas when I am in a time crunch, could this be aggravating my HS?

      Reply
      • In general, nuts (and anything derived from them, i.e. nut butters) should be avoided on an Autoimmune Paleo Diet (AIP) because nuts can cause gut irritation (and in the super sensitive gut of those with autoimmune conditions, they just aren’t tolerated).
        -Donyel (PrimalGirl Assistant)

        Reply
      • To echo and add to what my amazing partner Donyel already said about nuts & their butters being tough on autoimmune compromised guts, therefore not AIP friendly, you should also remember that elimination isn’t always permanent. Eliminate for 30 days and then try the almond butter as a part of a meal. You’ll find out real fast if it’s a trigger or not. Good luck and be in touch with more concerns or if you are in need of more support. – Sarah, Assistant PrimalGirl

        Reply
  57. This is a revelation. Thank you so much for following your instincts and making some original, insightful connections. Hope the medical community pays attention. And here here on the breast cancer, etc fundraising drumbeat, which guarantees yet more misallocation of financial and attention resources.

    Reply
  58. Thank you. Thank you so so SOOOOOON incredibly much for this!
    ♡♡♡♡♡♡♡♡♡♡

    Reply
  59. Thank you so much for sharing! I have had HS for about 20 years now in my most intimate areas. My husband knows of course but not many others do. I will try to narrow down foods so thank you for that I would have never thought of it. It made me cry in relief that I wanst the only one. HS makes life so difficult to enjoy most thngs people take for granted. So Thank you.

    Reply
    • You are very welcome. Tara’s book The Hidden Plague has all of the information, research, and detail on how to put HS in remission through diet changes. Consider reading it in detail and we will always be here to support you. Best of luck on your journey we are very proud of you for taking these steps.
      Sarah – Assistant PrimalGirl

      Reply
  60. I have had HS since I was 28 (I am now 71). This insidious disease dug tunnels from one end of my armpit to the other, which resulted in multiple abscesses to develop. I had several painful procedures, including injections, lancing and scraping the tunnels, done in the doctor’s office and ultimately I was hospitalized for the third surgery. The surgeon said that surgery was the “ultimate cure”, so I was looking forward to saying “good riddance HS”! Not so! After a few years, it returned with a vengeance! I was furious, to say the least. I then started on a regimen of several different antibiotics and injections at the site. This has been ongoing…..

    My daughter, now 40, inherited HS, which made its first appearance when she was in her early 20s. She developed abscesses in most of the areas affected by this disease, and most recently in her breast. She still has scarring from previous outbreaks, so I was happy to read about the use of coconut oil may help to reduce these scars.

    I am very thankful I found you while doing a Google search for info on HS. Finally, after all these years, I am so happy to read all the information you and others have provided. HS is foreign to mostly everyone I know, so it is especially comforting to reach a site that is informative, as well as accepting. I will be trying the Paleo Diet and look forward to reading your book. Thank You and I look forward to future posts!

    Reply
  61. Hi just wondering if you can stay at stage one or does it just get worse? I have one like the picture of stage one on my groin. It only started after I had my second child but keeps flaring up in the same spot( over 10 times) it almost feels like my gland swells up first then the lump forms! I have been to the doc and they keep saying the same thing!

    Reply
  62. Well five years ago the doctor came out, took a look at my groin area as I could not get up from the sofa where i had been for about a month and he sent an ambulance.The hospital sliced me up and to them I was a boil abces victim.Ugly scars but what relief. I have been Paleo close to going ketogenic, but I have the sly potato/fries in the last few months.The pain i am in now ison a scale of 1-10 is 1 million. Potatos you are so gone.

    There is a dr in Lyon Dr Philip Guilaim, one of only 2 doctors in the world who has set up a group for sufferers of HS, he speaks English. I have met him, he is wonderful. He recommend hypaberic chamber treatment after surgery.

    We know how this screws up our lives folks,we look healthy and we are often in agony.Love and Strength to all of you.

    Reply
  63. Thank you so much for this article and comments. As sufferers from HS we can all share the frustration and futility of this disease and how badly it is handled by medical professionals, we really have a duty to support each other, its pages like this that have helped me through the worst of times.

    I have been a sufferer for 10 years. In secret. I’ve hidden my sores from boyfriends, friends, family and been misdiagnosed countless times. Antibiotics only worked while I took them, then the abscesses were back worse than ever. I read articles on HS a few years ago and went on the combined oral contraceptive pill. My sores cleared up for around 6 months, and then reemerged. Then I watched this video, which really helped; http://www.youtube.com/watch?v=mMUwZsxRq4w

    I had been using Hibi Scrub, which is an antimicrobial soap, and I continue to use it every day. I began using Turmeric capsules as a natural anti-inflammatory – they are amazing and everyone should take them, my sores are much smaller and less painful when they arrive now, I take them every day. I use Tea Tree oil on my sores which helps them shrink, heal and dry up faster.

    But I was really interested about the idea of links between Candida and HS. Candida, or an overgrowth of yeast in the gut, can cause a number of a of symptoms, many of which affect your immune system and are skin related. Interestingly, one of the main causes of yeast overgrowth is prolonged use of contraceptive pills, antibiotics and steroids… Could we all be part of a vicious cycle here? Are the things that we think help heal us really encouraging our next flare up? Interestingly, I’ve also found that fucidin and athlete’s foot cremes can really help on my sores, these are also used to treat fungal yeast infections. Candida also has strong medial links with thyroid, insulin and diabetes – all of which run in my family.

    I took the candida spit test and diagnosed myself with it. I cut out all carbs and sugar from my diet and I swear, within 2 weeks everything had cleared up. I’ve had one flare since, but it coincided with me falling off the wagon and binging on pizza and cake.

    These are recent developments for me but I just want to share with other sufferers that you CAN make changes that minimise the symptoms of this disease and how it impacts your life, I also came out to my mum about my HS and it’s such a relief having that support there, and I’m not sure why I hid it for so long now. Ultimately, I hope to get laser hair removal on my groin and underarms, I’ve read that some patients are completely cured from HS from having the follicles eroded.

    Best of luck to all of you, I hope some of this was helpful!

    Reply
  64. Thank you so much for this article ! I’ve had HS for over 20 years and your story sounds much like mine. I had given up, now I have hope.

    Reply
  65. Just wanted to thank you for posting this information. You have changed my life and I am forever grateful. I have been through two Doctors , a major surgery (excision of most of the epidermal layer around the perineum ) and no one in the medical field could tell me what was causing the cysts. I had ten post surgical flare ups (cysts that abcessed ) and have taken a metric ton of antibiotics Based on your suggestion I went paleo and eliminated all Nightshades from my diet. Zero flare ups, no more inflammation in my groin region and I am 12 pounds lighter. I also noticed that the IBS that I have had for 15 years has gone away. What a difference. Blessings to you and yours. Keep up the good work!

    Reply
  66. Hi , thanks for sharing this information, ( advance apologies , I do not speak English , wrote using google translator ) HS I start at 10 years old, under the armpits had a painful abscess that did not allow down my arms , crisis that lasted 3-4 days , oozing , pain and temperature ceased , but always had a greenish discharge , ruining my clothes and my esteem , not wearing clothes clear , nor ascended arms in public, did not participate in sports activities group , not going to the beach, always wore clothes in my bag in case of any accident extreme secretion especially when I was the crisis. It is amazing how this disease is not taken into account to investigate , with the doctor as I found there was antibiotic treatments and surgeries to remove abscesses that kept appearing. The past 43 years of age (33 years of my life with HS) year visit to an endocrinologist who recommended me to live Paleo remove my feed flour, beans , sugar and especially soybeans ( consumed ” soy meat ” milk and even supplements) started to eat real food and have surprisingly gone an entire year without the appearance of abscesses, this year leave the Paleo style vacation for a week and consumers always processed foods, and I woke up in the night pain abscess that was appearing again , the next morning I started my day with a glass of water with a few drops of apple cider vinegar, a glass of green juice , and until 3 pm, only consumers with vinegar water ( 1lt water +1 tsp apple cider vinegar or white) the abscess decreased and disappeared the next day without pain. From that moment I decided that Paleo is a lifestyle that works for me and I will always practice . once or twice a month , I make one meal out Paleo style either by a party, a gathering of friends and some unexpected event , but only one works and also because they saturate my body of toxins .

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  67. thank you for sharing your information. I am 58 years old and have been suffering with HS since my mid 20s. Recently my dermatologist has put me on finasteride. i will post my progress on this drug as I am not sure I have the discipline to go Paleo.

    Reply
  68. I cannot thank you enough for your courage and willingness to open up about this. I have been suffering from HS for 10 years and last year I found your post and adopted a paleo lifestyle. I honestly have not had one flare up eating whole foods which is so amazing. Thank you for your honesty and taking the time to write such an impactful post. All the best, Danielle V Boston, MA

    Reply
  69. I just want to thank for your blog. I just read this last week, after a long time of research on my own. I never thought it may be diet related. I have just started the Paleo diet and hoping to get the same results. Thank you again.

    Reply
    • So proud of you Rose!!!! Read the book, The Hidden Plague and it will give you all the tools you need to successfully transition to the lifestyle that is the absolute best for getting you healthy! Sarah, Executive Assistant to PrimalGirl Tara Grant

      Reply
  70. Thank you so much for this… even though you wrote it a couple of years ago. I spent the whole time reading the second part crying a bit. The idea of getting any sort of relief would be wonderful. I was on a heavy antibiotic for awhile, and while it generally helped, I had to stop it because of other issues, and the HS came back even harder than before. I’ve done paleo before, but I didn’t give up nightshades (even though I knew it was a possibility). Going to do it again, along with the nightshades. Thank you, thank you, thank you.

    Reply
  71. Hi, I have read most of the posts and can not find one that mentions sinus tracts that are associated with HS. Can someone comment on them?

    Reply
    • Hi Estell, sinus tracts are created when the infection in the HS flare site, which often presents as a deeply inflamed hair follicle, creates a tract to another infection site. They are a common symptom of the disease and create large areas of infection deep under the skin. Does that help? Also we recommend finding the HS support groups on facebook (there are many just search for them) as the people in the group often have the same or similar issues and have lots of advice and support in managing them. – Sarah, Assistant to Tara Grant, PrimalGirl

      Reply
  72. I am sitting here in tears right now. I have always felt so alone, this isn’t something you can really discuss with people who don’t understand. I love my friends but it’s impossible to explain the pain, depression, helplessness and worthlessness that you can experience with this disease. I was diagnosed with diabetes last year, and have since lost 135 lbs, with another 100+ to go. (The plus I will decide when I get down to that weight). It’s falling off pretty quickly. I don’t know if this adds to the discussion, but my doctor told me a couple of things that really opened my eyes. First of all, antibiotics do nothing except work as an anti-inflammatory. I have never had them work for me, and I don’t recommend taking them at all, because it wil build up your resistance to antibiotics and that could kill you when you need them the most (imo). I have also had doctors prescribe antibacterial soap and such. My doctor told me that this is a farce. You are just as well off keeping the area clean with regular soap and water. Why? Because they have examined the pus and blood that comes out of the boils and determined that there is no infection present, no bacteria. Bacteria does NOT cause this. It is primarily auto-immune. What I would like to say also, is that I have been inadvertently following a semi-paleo diet because of diabetes. I simply don’t eat potatoes anymore, and if I do, it’s sweet potatoes. I eat raw tomatoes occasionally and the one time I have had spaghetti since I started this, I was violently ill all night long. So it seems to me that losing weight, not eating nightshades and simply keeping yourself clean are the keys here. Thank you SO, SO, SO much for creating this page. You have given me, and probably countless others a new outlook and some hope. Question: Has anyone else suffered with Urticaria on and off? It worries me that I do get it occasionally (and NOTHING fixes it exept prednisone, until the next outbreak). I tried juicing, but even the very greenest of juices makes my blood sugar spike out of control. In fact it may be what helped to push me over the edge into full-blown diabetes in the first place.

    Reply
  73. Hi thank you so much for your blog on HS.. Had no idea what I have been suffering from for over 20 years. I did have a question. Last year I went on a strict juice fast for about 29 days. Mainly just drinking the “Green Machine” drink 4-6 times a day, no food just the juice. Sure I lost 30 pounds however I noticed, that all the boils under my arms went away and the scarring and marks lightened up so much that it almost looked like they were never there. I’m not a nightshades eater..but we do eat stuff like rice, flour, etc. Do you think the green machine ingredients in juicing helped the HS subside? Or was it just absent of certain foods? Have you heard any connection between juicing and HS reduction?

    Reply
  74. I had a painful lump between my cheeks/below my coccyx about 23 years ago when I was 13 and went to see a doctor but he dismissed it. The lump and pain went away but I’ve had a small hole there ever since. Now in the last six months, seemingly out of nowhere I have had a “boil” get huge on my face, two in my armpit, and now two more even bigger ones in the same armpit with smaller ones around. Plus I have one or two small zit-like bumps close to my mouth. My diet for the last decade has been reasonably healthy and the same so I’m very confused as to whats happening.

    I don’t want to start taking antibiotics.

    Reply
  75. Hi Tara,

    I can’t thank you enough for sharing this information with us as well as your personal journey. I have had HS for around 10 years now and like almost everyone here, did not understand what was causing it and what it was called. I was subjected to various different antibiotics as well and was asked to stop shaving/waxing and the whole nine yards. Nothing worked.

    I get flare ups every week and they are the worst before/during/after my periods. Reading your blog and what you’ve done to put your HS into remission has given me much hope that I would like to start a support group/fund for HS sufferers in Malaysia (which is where I’m from) and perhaps even Asia. The climate here doesn’t help the flare ups as it’s hot and humid all year round – lots of sweating! It is also extremely difficult (next to zero chances) of finding organic, grass fed meet/dairy products in our part of the world so I will be doing a largely seafood based diet.

    I will go into full AIP mode as per yours and the paleo mom’s suggestions to start my healing process as well. Once again, thank you from the bottom of my heart for the tonnes of research, experimentation and information that you have done and shared with us – it is absolutely live saving.

    Reply
  76. I randomly stumbled onto this blog while doing a google search on HS and essential oils. Just getting into the oils and wondered if they might help. I’ve had HS since I was around 7 years old (I’m now 33!) and it seemed to flare only if I fell directly on my butt. Doctors had NO idea what it was and told me to soak in the tub in the hottest water I could handle and gave me some crappy antibiotic pills to take. They worked for awhile and I didn’t get them that often, but around puberty those little suckers migrated to my groin. I’ve had them in so many spots on my groin it’s not funny and some do have tracks now. Some places healed and I haven’t had a flare there in years. When I was 15 or 16 my mom took me to a dermatologist and I can’t remember if she diagnosed it as HS or something else, but I was put on a grueling regimen of accutane and forced to sign an agreement that if I got pregnant that I’d have an abortion (since accutane basically guarantees a baby with sever birth defects); all that because my mom wouldn’t allow me to go on birth control (which I wasn’t sexually active at that point anyway!). I eventually just stopped taking the accutane because I would get these nasty headaches that lasted for DAYS which were typically triggered by wearing my hair in a pony tail or by being in the sun for 5 seconds. In my early 20s I went back to the same dermatologist who started injecting my boils with antibiotics. This actually helped some, but didn’t stop them completely. I did get a laugh when she went to inject one I had warned her about it being ready to pop and it popped all over her lab coat and she was visibly grossed out…LOL. I went about 10 years without seeing a doctor about my HS until I had a really bad flare a year and a half ago. Worst flare I’d EVER had…I literally couldn’t sit, stand, or walk. I went back to the dermatologist and I’m back on accutane. It took 6 months to get the correct dosage down for me and I’ve endured some of the worst side effects from it with the most painful the mouth sores! After that I started searching the web to see what if any new info existed on HS and some forums (I can’t remember what sites) indicated it might be a food allergy. So I decided to go to a naturopath and be tested for food allergies. My test came back and my blood is reactive to 18 different foods and 11 of them I eat regularly. I tried the elimination diet and failed a few times which resulted in some minor depression. I’m about ready to try the diet again because I’m just tired of the drugs. When I told my dermatologist about my trip to the naturopath (which my insurance didn’t kick in a dime for and they’re EXPENSIVE!) she basically looked at me and told me they’re quacks that want you to go off white sugar, but she was interested in the lab I had my food allergy test done at and said she was trying to work out a relationship with them. From that point on I’ve vowed never to go back to her for my HS again. If she can’t embrace that there might be some non-medical way to deal with HS then she’s not worth my time or money. Based on what you’ve stated you’re experience has been I think my case is either less severe or I’ve had to so damn many years that I’m almost immune to the pain. As I’ve gotten older it’s started migrating toward my breasts and arm pits. Thank you for being a voice for so many of us and I agree that there should be some sort of awareness group for people suffering from HS.

    Reply
  77. Thank you for sharing this,

    I have been suffering from HS for years. It was so embarrassing I tried to hide it from my husband and had to wear a skirted swimsuit. I didn’t even know it had a name.

    About 5 years ago I asked my General Practitioner about it and after a humiliating exam and questions about my hygiene I got antibiotics. They worked while I was taking them but the bumps came right back after I was done. I didn’t want to spend my life on antibiotics and I couldn’t go through with another exam so I gave up on doctors.

    So, I read your article and I’m fairly lazy so I just picked nightshades and gave them up, well it’s been two weeks and I’m healing! No boils, less bumps, smoother skin.

    I always got worse in the summer so assumed it was heat related. Well, I was growing grape tomatoes and peppers every summer and eating them every day. Although I’m really sad I have to give up peppers and tomatoes, which were a big staple in my diet, I’m so happy to have a cure. Maybe next year I’ll buy a bikini! This has been my dark embarrassing secret for a long time but I’m sharing my story to help others, I know it might not be nightshades for everyone but that’s what it was for me. Thanks for changing my life!

    Reply
  78. Hello Tara,

    first of all I have to say .. Thank you for you informations. THANK YOU! A good friend of mine has HS and I searched like a maniac for an cure. (I didn’t know what it would be, but I know it has to be simple and that a cure MUST exist) So I found your article on Rob Wolfs blog and your 2 article on primagirl. I believe this is the real truth and real cure. But the friend I searched the “cure” for don’t want to do these things – your “Easy three steps”. So I took your most important informations – tranlated it in german – took some other informations to explain your informations better – and KABOOM. This is the result: An article on my germansite – http://www.truewords.eu/akne-inversa-moegliche-heilung-gefunden/

    I hope that many people in germany will read that and get cured…

    best regards
    ingo

    Reply
  79. Thank you for sharing your HS story, PrimalGirl. It sounds a lot like my story so far, but without the happy ending. I agree there is not enough HS awareness because us sufferers are embarrassed, or most people who have it are misdiagnosed. Coming out of the closet about this awful condition is a necessary evil, if we want a cure sooner than later.

    I have had clueless doctors say that my boils are caused by being too overweight, too lazy to exercise, and too lazy to wash myself properly. I have tried showering with Hibiclens daily, bleach baths, cutting sugar out of my diet, avoiding exercise/sweating, change clothes twice daily, sleep naked, wash my bedding weekly in hot vinegar water, and homeopathic remedies: like loading up on yeast infection, B5 and Turmeric pills for a whole-body candida and inflammation kill. Still boils. Still pain. Still making up excuses to cover up that I am in too much pain to see my friends or family. I have been lucky thus far that my boils stay small and do not leak/rupture, so I am considering swimming because the chlorine may help. Living with HS has caused my depression to boomerang back after I weathered it through my divorce. My marriage ended because my ex-husband found my HS-infected body, and related weight-gain, “repulsive” so he cheated. Dating has been an utter failure because I am too scared of being judged while being intimate. All of this has ravaged my self-esteem. I find dieting is nearly impossible when you are depressed. I have no energy or motivation to cook, and (sadly) eating Chinese takeout for lunch is the highlight of my day anymore. After reading your post, I am curious about eating Paleo-style. Would throwing a slab of meat on the grill with a fresh veggie be a good way to start eating Paleo? Or what other suggestions do you have for the lazy cook on tight budget?

    Reply

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