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Thread: Hidradenitis Suppurativa - still have outbreaks on Primal page

  1. #1
    amandaroo's Avatar
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    Hidradenitis Suppurativa - still have outbreaks on Primal

    Hi everyone,

    I don't post much, but I read a lot, so here's a brief background.

    I'm 26, and I started PB Sept. 15 2010 at 210 lbs/size 18. Currently I am 154 lbs/size 6. I lost the first 15 lbs in the first 20 days, it was amazing, and I felt drastically better after just 5 days of 100% primal (which, I should say, has always included dairy....mainly full-fat yogurt, creme fraiche, raw cow & goat milk, cheese, and butter with my veggies....I probably usually have at least one small serving of dairy per day, and no, I haven't tried cutting it out.) I was super strict about the diet in the beginning, for probably the first 8-10 weeks, sticking to it like 95% or better, my only "cheats" being liquor. However, I gradually got a little more lax here and there, and this year I have gone more 80/20 and my 20% now includes occasional corn or rice, but not wheat! Holy cow, wheat makes me SO sick now (within 30 min I vomit it back up)....which is so bizarre to me, since it was my staple, daily, grain before PB. I do also include liquor and wine in my 20%, and I know this is bad, but it's not always just 1 drink with dinner. I do still drink several in a night on occasion, til the point of being drunk (although that happens no more often than once a week). I did use to drink a lot more before PB (hey, I was living in New Orleans pre-PB lol)

    So, my HS. I had my first boil erupt in 2008, inguinal area (which is where I've gotten all subsequent boils). Dermatologist gave me doxycycline with like 10 refills and told me to take a course of it if I ever got an outbreak. Which I did. I'd take it for a few weeks, it'd clear up for weeks or months, get another outbreak and I'd take another round, etc. and I'd always get a damn yeast infection with the doxy, so I was taking diflucan with every round. This went on until just before starting PB, so a year and a quarter probably. Also, I would say that my symptoms have been mild stage 1....I have generally only gotten 1 boil at a time, and there may be 1-3 days where I'm really uncomfortable at work b/c of my clothes, but I've never had to miss work because of it. I'm grateful for that, because I've read some horribly sad stories about people with stage 2 and 3.

    After starting PB I had high hopes of this problem going away forever. But it hasn't. I've still gotten outbreaks, and I actually have one right now that is particularly annoying and makes wearing underwear painful. I still continued to get them in the beginning, when I was super strict, and I just attributed it to still being obese (even though I was losing fat like crazy). The outbreaks have been a lot less painful and heal up a lot faster compared to pre-PB (well, actually, they weren't healing on their own pre-PB, I had to take the doxy), so that's good. I've used tea tree oil on the boils and that usually seems to help them go away/drain a lot faster.

    I have done some research, but not enough, I'll admit. It's never been *that* severe of a problem, just an occasional annoyance, but now, 3 years later, I'm getting tired of it. I've never really felt that motivated to get to the bottom of it before now. And with the research I have done I end up getting frustrated and giving up quickly after every website or paper (I work at a university, so I have access to journals) says antibiotics or surgery are the answer. There's only 2 posts in the forums here that mention it as part of a cluster of other problems, usually auto-immune. I don't have any auto-immune diseases that I know of, but both of my half sisters (one shares the same mom, one shares the same dad) both have AI problems....lupus (dad side) and rheumatoid/psoriatic arthritis (mom side).

    Also, I used to be extremely D deficient....I enrolled in the D*Action study and I was really low, I forget exactly what the number was, but I think it was less than 10 ng/ml, and after supplementing I actually ended up a little high, was 90 ng/ml in March '11. The only other supplements I take are fish oil and occasional cod liver oil. Should I try zinc? Anything else?

    Anyone else here have any experience with HS? Any recommendations? Should I try eliminating anything? Like I said, the only things I never eliminated completely were alcohol and dairy (and coffee....but I usually only drink that 1-2 times a week, I'm more of a tea girl).

    This current boil, which is the worst I have had since starting PB, I feel like is related to my throwing my body completely for a loop due to my vacation in Puerto Rico. Went with my husband and his family (who is from the island) and it was impossible to avoid eating rice and beans.....every day :-( They just don't get it, and I would've been being incredibly rude by refusing to eat what was presented to me. I was able to avoid wheat entirely, because at least gluten intolerance is something people have heard of before. They also put Sazon in everything, which is MSG....and they cook everything in cheap corn oil. But anyway, I was there June 2-8, and ever since getting home I haven't felt right, my stomach was messed up (felt like I wasn't digesting anything correctly, would get random diarrhea) until 10 days ago. I could feel this boil coming on about 2 weeks ago, but it really flared up about 5 days ago.

    Anyway, sorry for such a long post, any help/suggestions/ideas/etc. are appreciated.


    Thanks in advance!!! :-)

  2. #2
    Blackcatbone's Avatar
    Blackcatbone is offline Senior Member
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    I have it as well, it's an AI disorder so of course gluten has to be completely eliminated. Corn is #2. You have to read labels, familiarize yourself with everything that's made of corn and pretty much give up almost everything even slightly processed. Rice, for me, is probably the least bad, but it's still not good. I'll have a small bit of something made from it about once every few months.

    Try supplementing with turmeric and zinc. I take others as well, but those two are key. And read every label for the possibility of cross contamination. I accidentally ate some macadamia nuts that were possibly contaminated, they were, and had a new flare up a few weeks ago. Still battling it back.

  3. #3
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    Corn is a tough one. There are so many additives that are corn derived. Just trying to find supplements without any corn is a trial.

    I've been wondering if I'm sensitive to it. I've been living half time at my dad's place lately. He's in hospice. Needless to say I don't have as much time for cooking as I usually do. I've been relying on more packaged foods. I'm still trying to stay primal but it's not with the level of cleanliness I usually have. I rarely had any digestive issues on PB but lately I have. And only when I'm at my father's house. I haven't had any problems while at home. I don't know if it's stress or that I'm having more additives in my food. These additives are often corn derived. The worst was after having some pulled pork my sister brought. It had a lot of ketchup in it. This was just your regular supermarket ketchup so it was full of corn syrup and lord knows what else.

    I had tried going gluten-free for six months a couple years ago for my autoimmune thyroid problem. I had no results. When I eliminated all grains and legumes going primal, I saw an immediate change in my thyroid symptoms and lab results. That leads me to believe that at least one of the foods I've eliminated could be an issue and I'm wondering if it's corn. I haven't eliminated dairy, either, but I don't tend to eat much of it.

  4. #4
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    I have had HS since I was 9...I am 32. I stopped eating gluten a little over a year ago and avoid sugar and sugar like stuff as much as possible and I have noticed that while the HS has not gone away completely....that it is much more manageable and I only get "bad" ones when I am in the throws of my cycle....and the bad ones are now like the tolerable ones prior to no gluten. I have only ben Primal for about a week so I don't have more info, but I do know that when stress levels are high my HS flares...also eating gluten makes my body think that my stress levels are off the chart...maybe there is something to that with the rice and beans for you.

    I also eat a lot of coconut oil, mana, or actual coconut...this seems to alieviate some problems too as it is anti bacterial and such...

    and while it is gross...boil ease makes the bad ones easier to tolerate and they go away faster....if you are into non homeopathic treatment.

    Good luck,

  5. #5
    omri's Avatar
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    HS - Treatment

    HS Treatment


    Hidradenitis Suppurativa (HS) is an autoimmune disease due to high levels of Antibodies to Gluten. The Gluten connection is not well known in the Medical community – doctors are not sure about it yet. This gluten problem became evident because some HS sufferers have gone on a Gluten-Free diet (GF diet )and their symptoms became less intense or removed.

    In all autoimmune diseases, there are high production of Antibodies .
    Oral Tolerance is the Medical Discovery we use to fix HS.
    Oral Tolerance" is the correct way and is now being used to treat HS.


    Oral Tolerance is the one of the Great Discoveries of Modern Medicine because it lowers production of Antibodies - Immunoglobin G, Immunoglobin M and Immunoglobin E.

    Proof: Autoimmune Inc. - a company that was established from the Success in Animal trials using Oral Tolerance for various immune diseases – arthritis, diabetes, experimental MS and other illnesses. That is correct – there was success in animal trials, but it was all premature because there was NO success with human trials.
    The company dissolved because it missed some important detail that brought success in their animal tests. This company was just one step to reaching success but could move no further and does not exist today.

    The success in animals - they used 6 months old mice and 9 months old rats – animals comparatively Fresh & produce good amounts of a blood factor. In most humans with immune problems and immune disease, there are small amounts of this factor-but not enough to heal.


    For more info on Oral Tolerance, please view:
    Oral Tolerance Therapy | Suite101


    Oral Tolerance depends on the T suppressor cell( a blood cell)- which functions to lower Antibodies - Immunoglobin G, Immunoglobin M and Immunoglobin E - associated with immune problems and can fix and cure HS and other immune diseases.

    But the important thing here is – if we duplicate all the Factors in the animal trials to human trials, we fix Hidradenitis Suppurativa.

    The studies by Dr. Polly Matzinger shows how to accomplish this: The T cell needs 2 factors or signals for full activation.
    1.) a peptide similar to gluten – we can not use gluten because it is the cause of HS – the peptide primes or makes ready the T cell. But without the 2nd signal the T cell remains in anergy( no activity). 2.) the Second signal - is B7 – other names for this are CD80 and CD86 also known as B7-1 and B7-2 ; either one is enough to make the T cell go thru the changes that makes it a fully activated cell.

    Matzinger's research is called Danger Theory. “Danger “ - because the Second signal can be induced in humans or animals by Dangerous methods-
    Vaccines , Toxoids , Products and by products of Bacteria , Viruses, Mycoplasmas and other contageous
    and virulent Disease causing Micro-organisms. These drugs can cause high fevers, Toxic reactions and Death and not acceptable for human use.

    You may view Matzinger's Danger Theory at
    Immunological Danger Signals




    However, there are other ways which produce that necessary 2nd signal and NO DANGER.

    The second signal is a blood factor & can be induced by HERBS.

    Two herbs that induce Second Signal -CD80 & CD86 production are:

    1.) Agaricus bisporus - is the white Button mushroom or champignon mushroom found in most U.S. and Canadian supermarkets.
    see article White button mushroom enhances maturation of bone mar... [J Nutr. 2008] - PubMed - NCBI
    2.) Goji berry known as Lycium barbarum - juice and extracts induces CD80- available from most Food supplement stores & the internet
    See article Activation of macrophages by polysaccharide-pr... [Phytother Res. 2009] - PubMed - NCBI


    This treatment is simple & not complicated - it contains a peptide (part of protein) and herbs and that's all.
    A course is 26 days.
    For Mild cases - 3 to 6 courses.
    For Moderate cases - 7 to 9 courses.
    For Severe cases - 10 to 12 courses.


    However, many HS sufferers are not yet convinced about the relationship between HS and Gluten.
    If you don't believe that Hidradenitis suppurativa is caused by gluten, kindly read this next info carefully.

    WE have researched Hidradenitis suppurativa – a Skin Disease - for some time now and we realized not just HS but a lot of Skin Diseases are also linked and caused by Gluten.

    We have listed several diseases and have found the causes point to Gluten and gluten Intolerance:
    1. Dermatitis herpetiformis (DH), or Duhring's disease
    2. Lichen Simplex Chronicus
    3. Lichen Sclerosis
    4. Prurigo Nodularis
    5. Lichen Planus
    6. Grover's Disease also known as Acantholytic Dermatosis
    7. some Morphea cases
    8. some Scleroderma cases
    9. Palmoplantar pustulosis - (18%) had IgA antibodies against gliadin
    10. Bullous pemphigoid- some cases

    If you do a research and even using the internet to get this info, you will find that this list of diseases - ALL 10 of them affect the SKIN &
    have been connected with Gluten and Gluten Intolerance and alleviated by GF Diet.
    I am trying to prove here that when you realize that gluten is the Source of these other SKIN Diseases, then you should decide for yourself if from these list, there is a VERY strong possibility that Gluten is also the Cause of HIdradenitis Suppurativa.

    One more proof: We are treating other illnesses successfully - Diabetes 2 and Celiac Disease. As pointed out Oral Tolerance
    works lowering Antibodes and our success with these has lead us to treat other diseases including HS.

    Our website is
    Home - Lux Health Resources

    Questions, comments or inquiries? kindly contact us
    via himmerland2000@yahoo.ca
    Lux Health Resources

  6. #6
    CAO1986's Avatar
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    ****Hidradenitis Suppurativa possible CURE 2013!!!!!!!!!!!!!!!!!!!!*****

    Hi girls just to give u a quick background I have had HS for about 15+ years since I was 11 years old. I tried everything from antibacterial soaps to antibiotics but most of those gave me really awful yeast infections even when I took probiotics to prevent that. My HS got worse over the years and I went from having one huge marble sized boil that would stick around for weeks to having several, up to maybe 5 or six very large unsightly boils that would last for months... And everytime a boil healed, another one or more would come up- it was like clockwork. I was damn near suicidal at a point because I thought I could never be close to someone and that I'd probably die alone with my HS for company. Anyway I finally saw a psychiatrist about this so thankfully I stopped feeling suicidal and started focusing on techniques to tell a potential partner what the deal was down there. Just to give some perspective on my condition, it was relatively mild, atleast in comparison to some of the HS pics I saw on google. The largest boils I ever got were maybe the size (in overall swelling) of about half of a ping pong ball. And that only happened like maybe twice. Usually they could get quite big like the size of a large marble (but not as round)-- or bigger. Anyway I had a psychiatrist treating me for ADHD and he recommended fish oil and when I started taking "pharmaceutical grade" fish oil my symptoms disappeared completely! I think most people who take fish oil usually take the over the counter version which only has about 300g of fish oil whereas the "pharmaceutical grade" fish oil has 1000g. I started taking two capsules a day and literally in two weeks even though I was at that time preceding my cycle when it's usually at its worst, I had, nothing... It was all clear. The boils that were there still took the same relative amount of time to go away but once they were gone they were gone. I have since cut down the fish oil to once a day and currently I just take it intermittently every few days or so but I had to share what has made such a difference in my life. The brand I take is Nordic naturals pro omega pharmaceutical grade fish oil because the type of EPA and dha in it is closest to that found in nature. All of this made sense in hindsight because if u research HS u will see that it is a condition rare in Asians, and guess what?? Asians have a diet that is high in fish. (Sushi anyone?) anyway if ur taking other medications or are pregnant u need to ask ur doc before starting on this supplement but stay strong ladies. I didn't think there was a light at the end of the tunnel for me but all I needed all this while was a high dose of... Fish oil!
    Last edited by CAO1986; 03-24-2014 at 08:11 PM.

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    Ok so I also had it... This is what has helped me... I think she is wonderful and has quite a bit of info to read...

    Primalgirl Opens Up: Hidradenitis Suppurativa Part 2 | www.primalgirl.com

    Basically, she says to cut out nightshades. When ever I eat nightshades I break out. I would experiment with it. And she mentions that sometimes it would take two weeks for an outbreak. Which makes it hard to pin point what is exactly effecting the outbreaks. I really hope this helps!

  8. #8
    Jmitchell's Avatar
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    Ok so I also had it... This is what has helped me... I think she is wonderful and has quite a bit of info to read...

    Primalgirl Opens Up: Hidradenitis Suppurativa Part 2 | www.primalgirl.com

    Basically, she says to cut out nightshades. When ever I eat nightshades I break out. I would experiment with it. And she mentions that sometimes it would take two weeks for an outbreak. Which makes it hard to pin point what is exactly effecting the outbreaks. I really hope this helps!

  9. #9
    Otilia's Avatar
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    Primal Blueprint Expert Certification
    Very informative post on possible benefits of fish oil supplement on hidradenitis. Could you please detail, did you also follow a paleo, gluten free or nightshades free diet. Anyone else had positive results with fish oil supplements?

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