Greg--reading your post gave me the first sense that i'm not the only one who has the kind of rash i have, and what jpmock said too. i have been googling this for a long time but this is the first time i think i have at least a path to explore for the first time. not say you had a rash like mine. It's what you said about bacteria etiology, and some things to google.
i'm so happy for you, that you are free of it for 4 years. i'll definitely look into SJW. i came across it a long time ago, in the course of researching some long forgotten health thing and at the time, i was put off by something potentially risky about it.
but everything you just said makes sense out of some disjointed puzzle pieces i was working with. My rash has been there for i don't know how long, maybe it started 15 or more years ago or 20, or 25, as a small half dollar sized reddish spot on my left forearm. Later i also saw a larger one on my left hip, and that was all i had for a many years. No itching, and i was otherwise extremely healthy so i didn't pay attention to it.
i don't remember exactly when it started spreading, but at some point it did, very very slowly. I'm not even certain that the thing that is spreading is the same thing as those two reddish spots i had for the first many years. i had no idea what to put on it or what to do about it to stop it from spreading. I tried some cream with zinc in it from Amazon, Dermazinc. Too expensive to put all over my body though, and not sure it was necessarily helping. It wasn't getting rid of it, that's for sure.
I rarely went to doctors for any illness because there are various holistic remedies i have had success with and MDs rarely have a treatment of anything i get, and they don't know the cause of it, so a waste of time, except in rare times when they do have what is needed.
Anyway, i do remember that the rash had spread asymmetrically to different parts of my body by 2014, and it has continued to very slowly spread, large red blotches, red bumps (i mean dark pink), flaring up , dying down, some places get 'weepy' especially if i try to peel the rough flakes off, some skin is very rough and dry, when not weepy, many places, the skin feels thick. I'm 68 now.
I finally went to a dermatologist last year. My dog's healer said it was mold. He meant internal mold though. i asked if the dermatologist could test for mold, he took a scraping and under the microscope, there was nothing to see. He took a biopsy from one of the worst places. The closest i came to a diagnosis was "consistent with allergic dermatitis" from the dermatologist and "spongiotic dermatitis, acute," from the lab, in parentheses they put "(allergic vs contact dermatitis.)"
Basically none of this was useful information--just some generic terms. The dermatologist---it was like my usual experience with doctors. He didn't know what was causing it but he cheerily said he was going to prescribe some topical steroid cream. I said i wasn't comfortable taking steroids, especially over such a large area, upper legs, lower legs, upper arms, lower arms, lower abdomen, left breast, right side of back, not on face, neck, hands or feet. skin discolored like a pinto pony, rash skin right next to normal skin. That would be a lot of steroid, i don't think it even comes in a size that would cover it.
Anyway, i had already told him it did not itch, it has never itched. As far as i know, the main reason for steroid cream is to treat itching. The problem is, he felt defensive, like i thought he would give me something that would hurt me. And yes, i do think that, i know that, but i wouldn't accuse him of it, i believe doctors don't see the risk the same way i do and are thinking in a one size fits all manner, rather than understanding my particular circumstances, they mean well, he said "I would put it on my 7 year old daughter."
I saw another dermatologist in that office for the biopsy follow up, and she was more supportive and understanding about my not wanting to use steroids, but she said "i have a lot of patients who beg me to prescribe oral steroid medication and i won't do it" (acknowledging her respect for the risks) but she said in my case, she strongly encouraged me to take prednisone orally for two weeks plus topical for longer. I can't justify it. My immune system is already not dealing with whatever is causing the rash. the last thing i want is to put it under more stress.
I've heard stories of people who said they used topical steroid for eczema with mixed results, and then when they stopped the steroid, there was a rebound and it came back worse than ever. I don't need that, or the risk of it. But, i still have this terrible rash that seems to be slowly destroying my skin.
doctors, these medical guys, they leave so many gaps in their communication and their expressed reasoning. Dermatologist said it was consistent with allergic dermatitis but when i asked about allergy testing, he said it wouldn't help. It wasn't clear why, though i believed him.
So, i went to an allergist. He tested for everything and i'm not allergic to anything. i knew that. But i was hoping, hoping maybe it would be eggs and i could just stop eating eggs and it would go away. but that was a dead end. So does it make sense to call it allergic dermatitis? i guess it does to people who speak that language,
The allergist said he didn't know what was causing it but that the normal bacteria we all have on our skin, our immune systems keep it in check, but maybe my immune system is impaired and so it's not being held in check, he said that was just a guess. He recommended a bath every morning with bleach to kill the bacteria, and then put vaseline all over myself. Petroleum sludge. I got the logic of it, as he explained it, but it creeped me out. I never got around to trying it.
So, i was sitting here a few days ago, thinking about some bacteria slowly eating all my skin, and being helpless to do anything about it. Then, i had an idea, why not put colloidal silver on it? I keep it around the house for occasional specific things. i know it's supposed to be anti-microbial. i have one that comes in a spray, it sprays a fine mist. It's just a two ounce bottle, so, i picked out 4 places and started spraying them about 4 days ago. It was soothing. The first couple of days, i was thinking maybe it looked a little better, the way it looks between flares, but i couldn't tell for sure. But the third day, yesterday, i could really see a difference. The skin is pretty thick in those areas so if it keeps improving the way it clearly is now improving, continuing today, i expect it will be a long time before the skin gets back to normal, if it ever does, but watching it change before my eyes is pretty cool. i hope it continues.
I have such a big area to treat and will have to get naked to put it on several times a day, to cover all the places, and it will cost a fortune. i think the 2 oz bottle is about $12 or something like that, it started getting low by the second day and i went out and bought two more bottles, they're all getting lower, maybe i can get another day out of them. Still, it's the first time i've felt like there might actually be something i can do instead of just sit and watch my skin rot, with no answer about what it even is. i have read that certain bacteria have become resistant to colloidal silver.
But your post is really helpful in just figuring out what's going on. It makes a lot of pieces fit. Like, the way you frame it--it's the first hypothesis i've heard that doesn't presuppose an inherently compromised immune system. Your idea is that there could have been an exposure of the skin to the staph aureus, giving them a way in , to colonize in the skin. I'm otherwise healthy, at least as far as very rarely getting colds or flu or anything else infectious, and whenever i do, they're very short and mild. so the self exposure of the skin from the nose makes more sense of those parts.
i notice you didn't mention any topical therapy, you just mentioned taking the SJW orally for 6 months. Was your skin itself in need of any kind of repair? Mine appears to be. But instinctively i don't like putting things on my skin, especially things that clog the pores.
Did you get any sort of test confirming that you had staph aureus on your skin? Or is it more a matter of treating with SJW and if it works, then you know the bacteria was probably the cause?
i sure appreciate you taking the time to write such a detailed and hopeful response. it must be wonderful to look back on dermatitis as something in the past. I am going to google all those terms you mentioned.
Thanks !