The 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.)
- 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.
- 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.
- 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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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:
- 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.”
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.
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.