Hello, I have had 70 operations. The thing that has helped me out tremendously is eliminating all Dairy, Seasoning, anything that contains gluten and all food that has artificial ingredients. I only eat Organic food, Vegan and Gluten free. If you need to use seasoning it need to be all purpose.

Hi, RaeRaeReins

Sorry for the late reply, I haven't been checking in often lately.

There have been many testimonials posted here about elimination diets being helpful, and there is a book by Tara Grant about her success with dietary measures for HS.

No two people with HS may be the same when it comes to what to eliminate. People have reported benefit from eliminating dairy, nightshades (potatoes, tomatoes, and eggplant belong to the nightshade family of plants), or yeast, and there have been some clinical reports describing some success with yeast elimination diets.

These are probably "palliative" measures - measures that don't get to the root cause, but can be helpful or provide relief, but elimination diets are something you can look into and try yourself.

Many posters here have reported some relief from taking zinc or turmeric supplements, although there are some cautions that come with them - zinc can be toxic in quantity and can accumulate in the system, turmeric can cause stomach problems in some people. etc.

We are fortunate enough to have enough research to have very plausible bacteriological causes for our symptoms, at the same time we're more or less notorious for not getting long term relief from antibiotics.

Doctors who are unaware of biofilm infections may misinterpret the antibiotic failures or the lack of cultures (because biofilms can be difficult to culture) as meaning there is no infection present, when in fact research not only shows there consistently is, but that we may in fact have a fairly predictable bacteriology, with a specific species of Staph infection characterizing the earliest stages, and anaerobic bacteria like Prevotella or Strep species joining in in later stages.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4257786/

I think a big problem making use of this information, though, is that biofilm may be involved. The Centers for Disease Control (CDC) warned doctors that some 2/3 of all infections that turn up at clinics may involve biofilm, but I don't know they or anyone else have really offered practical guidelines for treating them.

It seems widely accepted that biofilms can evade antibiotics but beyond that it may still be more or less the blind leading the blind.

I don't know how up to date this is now, but here's an example

https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X%2814%2900090-1/fulltext

"Biofilms cause chronic infections in tissues or by developing on the surfaces of medical devices. Biofilm infections persist despite both antibiotic therapy and the innate and adaptive defence mechanisms of the patient. Biofilm infections are characterized by persisting and progressive pathology due primarily to the inflammatory response surrounding the biofilm. For this reason, many biofilm infections may be difficult to diagnose and treat efficiently."

"Most microorganisms in the environment grow as biofilms in order to be protected against the hostile environment [7]. Traditionally, clinical microbiology laboratories have focused on culturing and testing planktonically (= non-aggregated) growing microorganisms and have reported the susceptibility to various antibiotics and antiseptics under planktonic growth conditions. Microorganisms in the biofilm mode of growth, however, cause chronic infections in tissues and on the surface of medical devices. The clinical implications of microorganisms growing as biofilms are that they may be more difficult to recover from clinical samples, and that they are physiologically much more resistant to the effects of antibiotics and disinfectants [6]. Moreover, antibiotic therapy based on susceptibility testing of planktonic microorganisms may be associated with treatment failure or recurrence of the infection."

Some doctors might still be out of the loop about these things. My psychiatrist who retired only recently was also a medical doctor and one day he asked what was causing me anxiety, and I said I was afraid I was never going to get successful antibiotic treatment because the doctors I go to don't seem to know what biofilms are, and he said, "What are biofilms?".

There are dozens and hundreds of YouTube videos and thousands and thousands of medical journal articles on biofilms and he had never ever heard of them.

I tried to explain to him the gist of what was in some of the videos - some that think bacteria are dodging the bullet with antibiotics by more or less going to into suspended animation (or some of them doing this), because many antibiotics target the processes of active, actively dividing bacteria which a lot of HS bacteria may not be - but he didn't think bacteria could do this at normal growing temperatures including in the human body.

I said, "Look, I'm not making this up, the CDC says 2/3 of all infections seen in clinical practice may involve biofilm" and "Our first three studies to look for biofilm in HS all found it" but we had to "agree to disagree" and just change the subject completely.

These videos talk about the same or a similar phenomemon, with bacteria showing resistance to penicillins by not dividing, when penicillin normally depends of bacteria dividing to be able to work on them.

Part 1: https://www.youtube.com/watch?v=pg3LcFd2Lz4
Part 2: https://www.youtube.com/watch?v=ncZUuzZVxBQ
Part 3: https://www.youtube.com/watch?v=YtB5KOeEuLY

Antibiotics may further suppress this kind of infection, or kill of those that it can (the active part of the infection), so they offer improvement, but as soon as they run out, relapse may be typical. Some of us might benefit from long term use of antibiotics like doxycycline. That's common enough that my doctor put me on it, although I didn't seem to get any of the benefits that some people have so after a long time I finally gave up.

There is a wound care specialist in Texas who is very aware when he is dealing with biofilm skin infections, but I don't know what he's been able to come up with beyond "frequent de-roofing and debriding", terms you'll see a lot in literature about surgical procedures for HS.

I worry about getting surgical procedures when it doesn't seem like infection is under control, and the literature on biofilms discusses the risk of contracting biofilm infections from various procedures.

So that is sort of the picture I've been able to piece together - we may know what the causes of HS are, and the bacteria that may be responsible are already closely associated with many of the symptoms we experience, but it may be something that no one really knows how to deal with that well yet (I could be wrong about that).

What I think happens is that if we get inflammation, it feeds the infection (or part of it) and returns some of the bacteria into a fast-growing state where they are trying to take over and really causing some dramatic symptoms. Stress hormones or hormonal flares may also encourage bacterial growth. Many of us here have experienced stress being a "trigger" for HS flare-ups.

The infection itself may also cause inflammation, so there may not have to be a food sensitivity present, although having one could obviously make things worse, and we do seem to be prone to them for whatever reason.

So in successful elimination diets, taking away inflammation from eating things we become sensitive to must have at least some serious potential to calm things down, just as many people report experiencing.

Elimination diets may not work for everyone, and since some of our food sensitivities may be caused by chronic infection (?), they may or may not keep us from developing further dietary sensitivities (?), so they certainly don't seem like a cure, but for those they apply to they may be a very powerful HS management tool.

The food sensitivities may involve developing antibodies to chronic infection that also react to different food components, or even to the patient. I suppose that too might be controversial, but it may also be fairly well studied. I think it may be revealing though that many of us seem as if we must develop them later in life, while they may be a hard thing not to notice earlier on.

Sorry I really don't have much more to offer than that.

At least with the biofilm angle, we know that as HS patients, we're not alone, other people with different problems may have the same underlying causes. It's a bigger problem than HS and it's probably getting a lot more research than HS is. I guess the problem is trying to turn that research into real practical steps and guidelines?

If anyone is interested, the wound care specialist from Texas is Randy Wolcott. He studied with Bill Costerton who is credited with introducing the world to biofilms.

You can just put Wolcott's name into Google along with the word biofilm and find a number of things he's written about biofims. He also has several YouTube lecture videos.

He knows a lot about them even if he doesn't really know what do about them. I don't know, though, I'm a bit out the loop myself the last several years. Maybe there is a breakthrough out there somewhere.

Be wary of people peddling biofilm solutions on the Internet though. Even the best and brightest may not be qualified to be doing that, and there may well be risks involved. A worst case scenario may be something that breaks up a biofilm but simply causes the infection from it to spread.

MAYBE that could be helpful if combined with antibiotics under a doctor's supervision, but I don't know if anyone really knows that - least of all the people peddling some of these things.