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 have had HS for 22 yrs. (I am almost 41) At times it is so bad that I cannot wear a bra or underwear.
My Derm in Chicago informed me that there was a correlation between my HS, Psoriasis, and the fact that I get staph infections so bad that I have to go on Cipro.
I have a lot of comorbidities. Psoriasis, Crohns, HS, Psoriatic Arthritis... I am going to have a tilt-table done in a couple of weeks, as they think I may have POTS as well (my daughter and my niece both have it). I have been on many different meds, biologicals included.
I also have chronic Urticaria. My Allergist thinks that me going on Humira may help my hives as well. I was going to start Xolair, but we’ve decided to wait to see if the higher dose of Humira works.
I’m already on tons of meds due to my PTSD and Chronic Anxiety, and ADHD. My biggest concern is that because of my Crohns, I don’t absorb meds correctly. I already have to take a ton of different vitamins because I don’t absorb the nutrients I need from food (plus, I don’t eat a lot- I’m on Adderall and have struggled with eating disorders my entire life).
I can only go to one pharmacy, one group of doctors, because they get concerned if I see someone else who doesn’t know my extensive history.
Just wondering if there is anyone out there, that, like me, has so much going on that their body feels like it’s going to fall apart. I’m lucky that I work for (let’s just say we’re one of the countries largest medical supply companies), and I have FMLA and plenty of flexibility when it comes to going to the doctor, or being off work due to my Autoimmune issues.
Some days, I just wish I lived a normal life...
I notice that carrageenan seems to be turning up more and more in foods, I accidentally ate a nightshade free lasagna the other night and ended up terribly ill including a bout of Tourette's (based on experiences, I will gladly listen to anyone who thinks Tourette's can be a complication of Strep infection). I go to look at the product label and sure enough, of all things, it's full of cheese made with carrageenan.
If your doctor is addressing Staph infection, they may want to be sure it's not "French Staph". Nobody except me calls it "French Staph" but two syllables is better than eight so I like to say "French Staph" rather than Staphylococcus lugdunensis (named after a city in France).
https://en.wikipedia.org/wiki/Staphylococcus_lugdunensis
"French Staph" may be much more typical to see in HS than Staph aureus. It seems to be a common mistake, from what I've seen on this board, to mix the two up or misdiagnose HS as MRSA, which may contribute to numerous antibiotic failures. A MRSA diagnosis might inspire a doctor to prescribe vancomycin, but that may be about the one thing that "French Staph" has reliably developed resistance to.
I suspect that lincosamides (clindamycin) and macrolides (erythromycin) may be the most reliable things to use, they may be better against bacterial biofilms than most of us realize.
Clindamycin has often been reported in literature to give good results for HS, but it's also important to realize that HS or biofilm may typically involve multiple infections, so even getting rid of the Staph may not result in a "cure" unless maybe someone is still at Stage 1 with their HS.
I'm still convinced my doctor killed my "French Staph" with an ordinary round of erythromycin, even when it was probably a biofilm, and that it's probably the stubborn anaerobic bacteria left behind that are causing a lot of my HS trouble and probably contributing to my gut troubles or even autoimmune complications. In my opinion, having an ETBF bug might explain a lot about both my remaining HS and what I'm starting to think may be Crohn's, although with the yeast sensitivities there may be some blame to go around for a yeast overgrowth, possibly related to previous antibiotic use since more than once the gut troubles seems to start about the time I get Bactrim.
My gut troubles don't seem to respond to probiotics.and it's getting harder and harder to get my doctors to take a yeast infection seriously, these days they're spouting this really silly stuff like, "Well maybe if you had HIV you might have yeast problems" whereas I thought it was very well known that all you need to have a yeast overgrowth is antibiotics.
At the moment I'm getting more good out of what I can avoid than what I can take for my complaints, but I don't think I can keep that up forever, I have a list of sensitivities that just wants to keep growing the past few years. It may even be that supplements are feeding some problem microbe strain or other, even after I switched to a yeast-free multivitamin, my guts are staging a rebellion when I take vitamins lately.
I think the two most important typical infections to look out for in HS may be Staph and Strep, they seem to be extremely common in the diagnosis, and some are potentially dangerous and probably shouldn't go untreated. It seems very typical with HS to have some kind of Strep as a skin infection, although not necessarily any type of Strep in particular.
I think there's a lot of hope left for us in antibiotics, but doctors may need to be particularly careful with them - I think there are a lot of ways to get it wrong, and history may bear that out - but I don't know of anywhere in particular they can go to get a good briefing, at present it's more like having to piece things together a bit from some of the more recent research reports on HS. They've done some fantastic work on HS as the Pasteur Institute in Paris, even if they may have still been overdoing things a bit with antibiotics last time they had a clinical trial.
They also published a paper on how rifampin and clindamycin might be able to get in each other's way when used together, and there are likely more different combinations of antibiotics that could be less effective against HS when used together, and I don't know if that's information that doctors are likely to run into a lot if they don't start looking at a few medical papers on HS on behalf of not only patients with HS, but in fact any patients with infections. https://www.ncbi.nlm.nih.gov/pubmed/24445967
I hope it doesn't cheer anyone up less to hear they may have multiple infections that can be tricky to treat, it cheers me up a little because I think "If you know what you're fighting, maybe you have a fighting chance" - somebody in the room needs to have a clue what they're dealing with when we go to the doctor's office. I haven't figured out how to clear the next hurdle though, which is getting my doctor to believe that the likes of me might have a good guess what I'm infected with, when they don't. They'd about have to take my word for it, since they don't seem to be reading any of the papers themselves that are being published about my diagnoses.
For whatever it's worth, you're certainly not alone in having HS (it's estimated to be millions of us), or Crohn's, which I"ve seen reported as one of the more common co-morbidities of HS, along with metabolic syndrome, PCOS, and etc, - and I don't think you'd be alone in feeling a debilitating level of misery with this stuff either. I keep trying to stay optimistic though - I really am looking forward to seeing how much help doctors will be able give us if they'd get just a little more savvy about dealing with infections, or learn to avoid a few of the more common mistakes with some of these diagnoses.
I guess if I'm going to treat everyone to my unqualified ramblings about autoimmune diseases, I might add that I've been studying autoimmune diseases more the past few months, and from what I'm seeing it's likely to be 10-100 times easier to deal with them in terms of associated infections, this business of "molecular mimicry" seems to be more common that I ever dreamed a few years ago.
That's an important point, is that doctors need to be careful to keep HS or other diagnoses separated from the well-associated infections. I don't think anyone is authorized by the Powers That Be to blame these diagnoses on the associated infections, but my doctors keep doing it by mixing up the two. It seems to be very easy for them to confuse themselves that an infection has become untreatable because it's complicated an "incurable" diagnoses. I've never asked any of them to treat my diagnoses, just the infections that are highly likely to be present in people with the diagnoses.
It's one of the reasons I"m so fond of the researchers at the Pasteur Institute because at one point they basically said in so many words, "Look, WHATEVER these infections have to do with this diagnosis, they need to be dealt with" - sadly, that degree of common sense still seems all too rare in literature on HS.
"Whether these pathogens are the cause of the lesions or are secondary infectious agents, these findings support targeted antimicrobial treatment of HS."
https://www.ncbi.nlm.nih.gov/pubmed/25418454