Anyone else also have Steven Johnson Syndrome? I have had these skin outbreaks for at least 30 years, which were misdiagnosed as Herpes until two years ago. The medication for Herpes never helped and I searched out alternate therapies to help. Also the outbreaks increased in pain over the years instead of declining, which is different from most Herpes symptoms I believe. Finally after a lifetime of not knowing what it really was, I made an appt. with a reputable surgeon during one of my outbreaks and told him to cut a culture and send to lab and find out what it was once and for all. He then diagnosed multiforme erythema but said no treatment was available unless it got bad enough and could try steroids. My own alt treatment was working fine so I declined but was relieved after 30 years to know what it actually was. Today I received my Mayo newsletter in the mail and learned that another name for this is Stevens Johnson syndrome which no one anywhere had ever told me. I had turned in my lab work from the culture to my GP and no comment or feedback was rec'd from her. This article is saying it is an allergic reaction to medicines or reaction to other illnesses. My reaction has always been to stress, either physical or emotional. If I'm sick or injured or overly upset, I'll have an outbreak. My self treatment is L lysine, has worked for me for all these years, thank goodness; as the newsletter says the skin rash life threatening and can cause lesions on internal organs. It also sounds like amyloidoisis doesn't it? So now alongside my curcumin is also my l lysine. I had been taking on and off all these years only when I had outbreaks but think I'll add it to my daily regimin. Anyone know of any reason why I shouldn't or have any insight of any of this?
Linda
MGUS
I had never heard of this syndrome, so I looked it up on Internet. I would be curious to know if curcumin has helped you with this skin condition? Have you considered topical applications of curcumin? The only problem with that is that your skin will turn orange or yellowish, so I would dab it only on areas that aren't showing (arms and so on). I know because I once tried dabbing curcumin on my face (I have rosacea, which is a kind of "lovely" adult acne) and turned blotchy orange. Lovely. It took a few days to return to normal. However, the bumps did diminish. And I know curcumin has been tried on psoriasis with good results. Wear dark clothes if you try this, though, because curcumin WILL stain!
I don't know much about L-lysine, so I can't give any advice there. But I don't see how it could hurt...Anybody else? Is there a dermatologist or MD among us?
Margaret
This is feedback on answers to my l lysine question. The painful rash does not respond at all to topical curcumin or otherwise taken by mouth. I had even considered that since this particular rash is sometimes caused by medications that I might be having a reaction to the 6 + grams curcumin and other supplements that I have been taking. But I quickly remembered that I have not been taking curcumin that long and this outbreak has been around 30 years. I wondered if the rash was a reaction to the IL-6 produced by stress (my CRP tests are very high off and on), or chronic illness. So my completely unprofessional, yet researched, thoughts are that this very painful outbreak is allergic/autoimmune reaction--since it responds to the L Lysine. By the way, that's interesting about Herpes killing cancer cells, but I did have better tests done that did rule that diagnoses out for sure as well as the test that found what it really was. Onward to more research about Lysine, side effects, interactions, and its possible effect on MGUS as well. thanks for feedback.
Margaret clued me into this and there are others
- interesting that herpes may form a cure?? So maybe your misdiagnosis might be your body's response to the invader??
http://www.aegis.com/news...
http://www.netscape.com/v...
Linda, have you looked into quercetin? I did a quick search, and found this, which may or may not be helpful to you, from the U of Maryland: http://www.umm.edu/altmed...
I thought of quercetin because I am taking it, and it reduces inflammation. Margaret
Margaret
You are a wealth of information as usual. That is a wonderful website, just spent an hour plus looking at some things. That the quercetin might help would explain my unnatural craving for bowls of cooked apples (from one to two bowls a day). It really made life easier when I found a hand cranked apple peeler and slicer. The guy at the fresh air market looked at me with concern and said, "What do you do with all those apples?" I guess he thought I was making some kind of illegal substance with it (-: btw, they are cooked with no sugar and lots of fresh ginger and a little cinnamon is all thats in the cooking. The website offered so much of other info to try as well. Thanks to all with your patience, as my question was not directly MM related or who knows..... maybe it was.
Linda
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