Perhaps finally a definitive diagnosis and cure

Below is a copy of a letter I've sent to the local MD college. Please note I am not giving out medical advice here. I am only telling my own story to date. Make of it what you will. Test the hypothesis at your own risk!

Greetings:

I am a 65 year old male who has struggled with Hidradenitis Suppurativa for the past 25 years. Over the years several doctors have tried to treat it for me with most usually just making it worse. The main site has been my left armpit with classic presentation and development but smaller lesions have developed in other areas.

About 15 years ago I was seeing a dermatologist for it. Her massive dose of antibiotics and steroids did little good for the condition. At one point she just gave up and told there was nothing further do be done. I stopped going to see her. However I am an environmental engineer with a strong background in micro-biology. On my own I found measures that improved the condition, squeezing out all the puss daily, a fairly painful process helped. Soaking in a bath of anti-microbial soaps helped too. But the biggest improvement I found was from quitting caffeine entirely. Regular good exercise relieved the infection sick feeling and likely helped the condition too. After about 4 years I had reduced the lesion in my armpit enough to try a surgery to remove the infected tissue. I requested such.

The surgeon, a general surgeon completely botched the surgery. The tissues of the armpit are the marshy ground of the body. The tissues are loaded with fluid and any damage to the area leaks lymph fluid for days before healing. Even in a healthy armpit. Oddly inflammation of the HS area seems to help the disease. She did manage to remove most of the affected tissue, a fairly large piece in my armpit. But she uses too many stitches too closely spaced, completely closed the incision, injected several shots of local anesthetic and covered the incision with a tight fitting waterproof plastic bandage. This was all very bad practice for the marshy tissues of the armpit. They sent me home the same day as the surgery. The pocket left under the skin filled with fluid in a few hours, popped half the stitches and washed off the band aid. At this point I completely lost all faith in doctors and their ability to help me with the HS. I never went consulted a doctor for some time after that. I continued the protocol I had developed on my own. The pocket under the skin would get filled with air so it made farting noises when I squeezed the discharge out. It took about another year for it to finally heal.

There was still a couple of small bumps around the area of the surgery but I was ok for about 5 or 6 years. The HS didn't flare up again until I caught Covid a couple years ago. It was a small flare up that I managed to get under control in a few weeks. Since then every cold or flu I have had has caused a flare up. It was starting to get out of control again with each bout. But I've had a hunch for a few years now about the true nature of the infection. I am a trained scientist and collected clues over the years dealing with the HS.

The first clue, anti bacterial agents don't seem to have much effect on it. Second clue, most of the time the site had such a bad odor, I was avoiding going out in public. But at times when it wasn't too bad it had a smell that reminded of rivers of lakes with good water quality. Third clue. I broke my left arm when the HS was at it's worst. The weight of the cast kept my armpit closed. I developed a new symptom, a red rash outside the lesions. I showed this to an older doctor and he recognized it as a fungal infection. He prescribed Clotrimazole topical cream. It had a very good effect on the external rash but not the subsurface boils. Fourth clue. I got the best results when a doctor who lanced a lesion stuffed the pocket with gauze with Iodine or Betadyne for a couple days. The lesions seem to spread sub cutaneously under the skin and not over the surface from pore to pore or follicle to follicle. I developed a suspicion the infection was fungal or a community infection involving bacteria and fungi. I brought this up with a few doctors over the past 10 years or so. They would just look at me like that was a crazy idea or they had no idea what I was talking about. I lance the boils myself now using the needle tip from standard diabetic lances. They are much smaller and sharper than the pig stickers the doctor used on me. I can drain the lesions without doing a lot of damage that brings more fluid to site helping the infection.

There's a couple other clues. I've noticed this weird effect with the clusters of lesions. Lancing one boil and draining it often cause nearby ones to open on their own and drain. It seems that physically the HS develops some kind of sheet like material that blocks off the holes with pressure from the fluid forcing this sheet like material against the holes to close them off like a valve. When the pressure is relieved the membrane of sheet has no pressure to keep it tightly sealed against the inside of the hole. As well the discharge if often more slimy in appearance and not the standard creamy appearance of staph infections. It resembles fungal slime I've seen cultured on grain for the mushroom industry.

Last year I got a cold or flu twice. The HS flared up again both times. I was starting to get a little scared and desperate again so I decided to explore this suspicion. I didn't know anything about anti-fungals so I looked it up on the internet. I knew oral Fluconazole was anti-fungal, the popular one shot treatment for vaginal yeast infections. I looked up whether or not is was safe for men to take. Turns out is is given to men for a range of fungal problems. I got on over the counter 150 mg Fluconazole and took it. Holy shit! The HS cleared up in a few days like it never had. The second time I got sick and the HS flared up again and I eventually thought to try Fluconazole again. It seemed to have less of an effect and the HS cleared up again shortly after from using my usual protocol. Just before Christmas last I got sick with a bad bout of the flu. The HS flared up again. I applied my usual protocol and it was clearing up but I caught a cold again in February and it got worse. Bad enough to try Fluconazole again. Fluconazole seems to persist in the body for about a week or more. In March I took two Fluconazole a week apart. I wasn't sure how often a dose was safe so exercised some caution. The HS almost cleared up. It flared back up again in April so I tried two dose a week apart again. Good result but still not complete. So this past two weeks I've taken 5 doses two days apart for ten days. It's nearly cleared it up again, but not quite. It may clear up on this round but waiting to see. I looked it up again and it seems Fluconazole is relatively safe in much larger dose for much longer period of time. If it doesn't clear up I will ask my family doctor for a more aggressive regime. This year the problem seems to be worse in some ways. Lesser lesions have formed in areas they hadn't before like the creases in my groin and the other armpit. I started taking Perindopril/Indapamide for high blood pressure about a year ago. I now think this is aggravating the condition which the courses of Fluconazole would have cleared up by now if I hadn't taken it. Last time I saw my doctor she asked me I had any sores around my bum. I didn't at the time but now I think she was asking about this potential side effect. I will go back to see her about using an alternative in the next few days. The blood pressure medication makes my skin very sun sensitive and it makes me a urinate a lot like caffeine used to. I think the blood pressure med and caffeine make me urinate out too much mineral or salt content in my blood which are needed to fight off fungal infections. I'm now also diabetic and I know the higher sugar concentration in tissues favors fungal infections. I also started small doses of Metformin a year ago However 25 years ago when it all started I was very far from being diabetic.

The sub cutaneous spread, fungi develop tendrils that can bore through surrounding materials, even solid rock. No doubt they can easily bore through human body tissues with this mechanism.

In conclusion I am now fairly convinced my HS is a fungal infection or a fungi or yeast is a major part of the problem. I am quite disappointed and disillusioned with modern doctors and their practice of medicine. With all of their medical training far superior to mine and diagnostic tools and technology far beyond anything I could access at least one doctor in 25 years should have arrived at this conclusion and thought to try an antifungal. Granted fungi and yeast can be hard to tell apart from skin cells under a microscope and many are notoriously difficult to grow in a petri dish. Still, one of these highly trained highly paid professionals should have caught a clue long before I did. When I suggested the possibility of a communal a infection they reacted like they had never heard of mutualistic microbial communities, as common as they are in the biosphere. As well with HS being a global health problem for as long as it has been someone treating the condition should have figured it out a very long time ago! I've said it before, there's something wrong with the way MDs are trained. There's too much bulk rote learning, not enough problem solving and research training like we engineers do now. We used to be like this too a few decades, but the pace of development and the size of the knowledge base forced us to start training in the discipline a different way.

Man it was 25 years of suffering with HS. It was agony for month and even years like holding a burning charcoal briquette in my armpit 24/7. It took me out of the workforce and ended my career. I'm wondering if I now have grounds for lawsuit against the local health authority or a local association of MDs claiming due damages for all the incompetence that cost me so much. I'm going to have to consult a experienced medical malpractice suit about this.

But the main reason I'm writing, for those living the same agony and shame of Hidredenitis Suppurtivia please please please take what I say here seriously. Test my hypothesis! Try a good aggressive course of Fluconazole on some HS patients. It's a fairly safe drug and little harm will be done to the patients trying the treatment. The standard best treatment now is very large very prolonged course of Tetracycline. If you look it up Tetracycline does have some weak anti-fungal properties. Fluconazole may well produce a better faster result with far less potential for harmful side effects and building bacterial resistance to antibiotics. Man if I'm right about this, fairly certain I am with my professional training and experience with HS, then it would be a medical breakthrough to rival a cure for cancer!

I will be sharing this writing with all the medical associations and sufferers I can find in online support groups because I strongly suspect you still have a mental block of some kind that will keep from testing the hypothesis. If your college doesn't want to take a little risk chance at getting credit for this breakthrough then there's likely those elsewhere who will. As well other HS sufferers won't have to rely on a quack ass inept profession to cure themselves with over the counter Fluconazole. I know the liability of giving medical advice for lay people. So I will only tell my story as I have done here and let the patients make of it what they will.

Thank you for your time reading this.

Charles Belhumeur
Regina, Saskatchewan, Canada