years of burning skin misery, halp

hi all, i have been dealing with folliculitis for a few years now - apparently - it has brought my life to a complete halt and i'm kind of losing my marbles. i have seen a bunch of dermatologists recently and i figured i ought to try and start getting in touch with other sufferers, rather than just doctors who seem to know *something* about a lot of stuff but... idk...doctors

until recently i had an idea for a year or two that i had dermatitis herpetiformis, which is caused by gluten, because 1) the lesions were appearing mostly on extensor surfaces and with bilateral symmetry (characteristic of DH), 2) a number of people in my family have celiac and 3) i have exhibited symptoms connected with inflammation/autoimmunity/"excess pitta" for a lot of my life. the lesions started quite a few years earlier, and i thought they were just bad acne/dandruff and i wasn't keeping clean enough, because i was homeless a lot of that time. however they got REALLY bad when i settled down and started living a "normal" life complete with a "normal" american diet with lots of beer and fast food. well i cut a lot of that shit out and it did get way better, as well as losing a ton of weight and becoming more emotionally lucid, but not til after i had been through a year-long course of oral and topical ABs that seemingly did nothing. that was around 3 years ago - first i thought it was candida (i know this really doesn't make a lot of sense now but i was pissed off at doctors), which prompted the dietary change (kind of a very half assed version of pescatarian keto), followed by my gluten theory, which doesn't seem to have helped or in the end to have really been correct. i have red, insanely itchy bumpy lesions that appear on the aforementioned extensor surfaces, face and scalp, upper back. upper back is chronically really bad face and scalp are not great either. back of hands and around ankles/lower legs are other common spots. i hate to say it but they seem to cluster particularly around my tattoos (some of which were done in less than sanitary conditions i'm sorry to say), although most of them didn't show any inflammation until after they'd been healed for years and i started having them on my face and elsewhere (no face tattoos!).

now i am starting keto because i see a lot of support for that in what (admittedly little) research i've done so far. (am also vegan.) i take turmeric, omega 3s, zinc, D and probiotics, and i try to keep all my clothes and bedclothes clean. i am also looking at some crazier sounding things like bathing in diluted bleach. the only thing i am really using right now is a glycerin-based topical witch hazel/aloe/lavender 'toner', prescribed benzoyl peroxide shower wash (planning to increase to 2 showers/ day), and a little bit of topical clindamycin i was prescribed. i don't really see the point in throwing more Antibiotics at what seems to be Antibiotic resistant and, if my doctors are correct, a basically incurable chronic staph infection. it is a lot better than it is been times, but i still wake up at night with my skin on fire (like now), going to sleep in the first place is tough; i still can't predict when it is going to get worse, i still feel overwhelming despair when it comes to planning anything like trying to get a job or anything else where i will have to go out and not knowing how bad it will be that day, if i will have horrid red welts everywhere that i can't stop scratching, i mean who wants to go out like that...

i feel so alone with this too and like i'm going crazy.....my parents have been very kind to put me up while my life falls apart but i can tell they kind of just think i am nuts, and they have their own health problems they are not really dealing with except through massive amount of meds, it's the "american way" and if they say anything about it it's usually like "sorry you feel that way, but it doesn't look that bad!" well it feels f*cking horrible and it doesn't seem to be much better understood by doctors either, who are all kind of like "meh, try this, then come back in a few months" as if i'm a f***ing guinea pig.... the simple fact is i can't live like this.

please tell me if this description provokes any thoughts or reminds anyone of similar experiences. what do i need to do???? what tests should i be asking doctors for? what supplements or practices should i be using (or not using)? i have an allergy/immunology first appointment coming up but other than that nothing but the same sad trudge back and forth to the dermatologist. thanks.... Tweet