Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
I hope you find what works for you Pretty Mama--you're much too young to have to deal with this garbage. I'm 55 and postmenopausal (no hormone therapy) and they say you can't get it after menopause (BS!!)
Gentle hugs and just don't give up--something will be your combination that works. So keep fighting and come out the other side stronger!!
I regularly take Vit-E, Zinc, Selenium and 20Mg of Doxycycline. Also I wash every day with the Panoxyl soap. I'm not quite 100% clean but very manageable since I started this routine.
I definitely have flare ups from poor diet. Specifically sugar and caffeine.
(Plus, strange things happened when my curried shorts got tossed in the laundry with oxygenating cleaner, which caused the yellow to turn to a Horror-movie red).
Pardon me if I ramble here, I'm not a doctor or even a med student
and I'm not smart enough to know how to try to say this in fewer paragraphs...
I'm still not quite sure what to think, lately I'd more likely attribute these mixed results with Turmeric to different effects on different infections, but I'd already worked out that my worst triggers seem to be things that research suggests boost inflammation.
What's frustrating is that things like this can be sold as anti-inflammatories because they lower certain inflammatory factors, and they can also be sold as immune boosters because they raise other inflammatory factors and inflammation is naturally part of the immune process... and naturally, I look at HS and I see things not healing, therefore I assume deficient immunity, and so I would occasionally attempt to boost my immunity and then have a huge flare-up. Oops...
How I think that it works out is that these things boost Th1 immunity, whereas if you have HS you might have plenty of or too much of that already, while being deficient in Th2 immunity.
There also seems to be a pattern where this kind of immune booster may tend to work by having certain substances (certain polysaccharides) which the body thinks is the inflammatory junk that many microbes are wearing - LPS (lipopolysaccharides) - so it sees this sort of supplement and tries to prepare for the invader that it thinks has already arrived...
So a healthy person takes Echinacea or whatever gearing up their immunity for cold and flu season, and no problem - whereas if I try that kind of stuff, the Aliens go on the warpath, and then my inflammation doesn't turn off so easily like it's supposed to... So typically things can go crazy overnight with inflammation and swelling from a trigger, and then take a month of pampering just to get back where they were.
Most of this may make more sense looking more carefully at exactly what inflammatory markers are in question - one thing you can get from some of these immune boosters is elevated levels of the inflammatory cytokine, TNF-a, just as that's something that can also come from infection.
Of course, we know some of the cutting edge clinical trials for HS involve ANTI-cytokines, antibodies that neutralize inflammatory cytokines like TNF-a (etanercept and adalimumab / Humira, for example, are anti-TNF).
So I'm thinking it's no wonder I get flare-ups that way, because if you look at it like that, coming into contact with that kind of material is in a sense of the opposite of certain HS treatments.
One of things that I learned may have this kind of immune-stimulating (Th1 immunity) material in it, is Turmeric... so while it's got all kinds of beneficial properties, it may also have that annoying and inflammatory component in it that some of us - particularly some advanced HS cases - might be too sensitive to (and I even got that same kind of thing with the concentrated Curcumin topically). So even before a person gets into the bacteriology, I guess it starts to make sense that maybe I should only expect mixed blessings from Turmeric or Curcumin?
Right before I started looking this stuff up last year, I tried a Pomegranate extract supplement and it would have probably otherwise have been fantastically healthy stuff, but my Aliens increased in size by 300% overnight...
So I finally go to look this up, and in terms of TNF-a boosting, Pomegranate was about the scariest thing I could find in the literature, because the lit said it was shown, at least in the lab experiments, to be able to elevate TNF-a by some 300%. So suddenly it turns out all these weird flare-ups that don't really seem to correlate to anything, may actually correlate pretty closely to the lit on inflammatory markers and modulators.
I don't know if all this is right, but I've been trying to live by it for over a year now and don't seem to have any more of these major diet or supplement related flares, and I've had some bad ones in the past. I spent a lot of time having to lay down just because it took me a good while to believe that that Ginseng could boost inflammation and to learn how that could happen.
It's a shame, because Ginseng is otherwise a miracle worker for me for just being uniquely great at counteracting the yuk feeling of being sick all the time, but it's just not for me until someone figures out that there might be a market for some of these supplements with the inflammatory immune boosting factors taken out for the sake of anyone who already suffers from some kind of ailment that involves chronic inflammation.
Dunno... in hindsight this all seems pretty obvious, but I was never warned about any of it - you know, at least not without digging pretty deep in literature and brushing up a little on cytokines, which is something I wouldn't wish on anyone... On the other hand, it seems to have helped me to have over a year where I can actually sit most of the time.
While I'm thinking of it, another bag of mixed blessings I ran into is Licorice Root... I took like a fifth of a cap and I have never felt so UN-inflammed in years, OMG! - just for the burning and inflammation to stop for a day. Unfortunately, even this low dose also gave me a major anxiety attack all day, so I've been scared (literally) right off it.
I can't make sense out of what sounds like excess adrenalin because while Licorice Root is known to boost the adrenals, literature makes it sound like the adrenal-boosting is due to the same chemical that can dysregulate a person's electrolytes or whatever...
You've probably heard stories about that, about people who ate too much licorice candy with Licorice Root extract in it, who messed up their potassium...
But this offending substance whose name I can only copy and paste (glycyrrhizin) is supposed to be removed from the product I bought, (DGL, DeGlycyrrhizinated Licorice) so I'm not sure what to think.
I am wondering, though, what if I steeped a bit of a cap in water and filter it out to make a topical wash instead of trying to take do it internally. If it didn't find some other way to be a mixed blessing when applied topically, it would be a wonderful thing.
Mostly though I'm wondering what life would be like if more of the microbes would get evicted instead of having to obsess over what's in stuff. Hopefully I'll get caught up soon on what I need to know about the latest work in HS bacteriology, and head for someone who can help with those kinds of issues. Considering past experiences, I'm thinking of trying to NOT tell them I have HS yet, and see if it makes any difference to how much they think they can do about things.
Also some of it's relative, of course...
More on topic, zinc is the first time I had much hope at all, to think there was something in my cupboard already that might help HS if I used it right... Some wonderful work by Brigette Dreno et al, which may be where zinc use started... If I understand it right, they got that therapy to even out some of the typical HS skewing in cytokines, with "Th1 cytokines" going back down toward normal, and "Th2 cytokines" going back up toward normal...
But even fixing up that mess to whatever degree doesn't seem to make for a cure, so it seems to be a recurring theme that different kinds of cytokine management (anti-cytokines, zinc) may only be able to offer improved disease management?
Also I'm not sure what all paths to inflammation might be at work - in spite of my experience with zinc having some anti-inflammatory benefits, I think some of my triggers may be able to somehow do an end run around it, so while this kind of thing gives general quality of life improvement, it may not be able to prevent bad flares from happening?
Cafestol purportedly raises cortisol, and filtering is supposed to help remove it... I do this because stress is a well-known HS trigger, and cortisol is often spoken of as being a stress hormone, and some people benefit from various means of managing it. I'm not sure how many of those methods are fully appropriate for HS, so anything that can be subtracted from stress rather than adding an unknown to combat stress tends to sound worthwhile...
But I've also read that cortisol can elevate certain inflammatory markers - i.e., some of the relevant ones that may already be elevated in HS. I've never heard of coffee being accused of causing inflammation - I usually read the opposite and that may be the role that coffee actually plays in my life, is offering some small anti-inflammatory benefits - so coffee may make a good example of where an inflammatory substance might be lurking in an anti-inflammatory?
I could be wrong about all that, but a coffee filter is simple enough and I haven't figured out where it could hurt. I couldn't guarantee it, but I seem to think it at least helps keep my morning carb cravings down by a noticable amount. Likewise with morning grumpiness, which I think might be fairly reasonably associated with inflammation?