About 6 years ago, August, I was relaxing in a deck chair and noticed a strange bug bite-looking red spot on my arm. Except it didn't go away or itch, it was just there. About weeks or 2 later, I felt like I was getting a cold or the flu and broke out into a rash on the trunk of my body. Weird.
My physician was on vacation, so I went to his associate that diagnosed me with atypical pityriasis rosea. A small rash that would go away with exposure to sunlight and a benadryl.
Everyday I would break out with more of this rash until It basically covered me from the mid-neck to the tip of my toes. Even the palms of my hands and soles of my feet had the rash. I was quite concerned that some of the bumps would not just heal and go away, instead they turned into scary scabs that were black. The itching was the worst for me, which is a bit atypical. The sunlight actually made it worse, I think mainly because it was hot outside and the drastic temperature just exacerbated the itching. I always had this creepy skin crawling feeling. At this point I was wearing all long pants and sleeves...in August, in Michigan. Ugh.
I went to my doctor to discuss. He had an appointment for me at University of Michigan's dermatology dept. within 2 days. U of M was pretty easy. Within an hour I had a skin biopsy and diagnosis of PLEVA. When I asked the dermatologist how long I could expect to have the rash, he told me "at least 2 years". I also got to have a syphilis test which was really fun, since the rash was on the bottom of my feet. "Just to rule it out" of course. Talk about embarrassing. They also asked me to visit their dept. at 7 am so all of the residents could see this disease manifestation, as they had not seen it before. Uhhhh....naked in front of 100 residents. Science or not, no thanks. Or as a friend once quoted to me, in a Jersey accent "not fer nutin"! :)
PLEVA is http://dermnetnz.org/scaly/pityriasis-lichenoides.html Just a warning...the photos on this site are gross, so you've been warned!
Basically PLEVA is :
The cause of pityriasis lichenoides is not yet known but 3 major theories exist:
- An inflammatory reaction triggered by infectious agents
- A relatively benign form of T-cell lymphoproliferative disorder
- An immune-complex-mediated hypersensitivity vasculitis
We discussed treatments which included a year long course of antibiotics, chemotherapy drugs and light therapy. Since my reactions to the sun were negative we decided to wait on the light therapy. I am allergic to all penicillin and sulpha drugs, so there were major concerns over taking such a long course of antibiotics and possibly becoming immune to the erythromycin family of antibiotics. They wanted to keep the chemo drugs as a last resort....so that left the antibiotics. And a prescription for steroid cream that I had to measure everyday so I didn't overdose on it. "Today my arms will be itch free, but from the knees down....you're out of luck until tomorrow!"
I started a time release doxycycline and we had a few weeks of adjusting the dosage so I didn't have so many side effects. In the meantime, I was scouring the internet's THREE references for PLEVA and everything on immune disorders and what could possibly help to be rid of them. I couldn't shave my legs, wear a pair of jeans or have any type of fingernail growth for fear of scratching while sleeping.
Probiotics and fermented food became my focus and I really thought "what the hell, it can't hurt, maybe it will help." I truly believe that in order to be healthy, your "plumbing" has to work correctly.
I entirely cut out any foods from a box, bag or can. I also cut out all lunch meats and processed meats that weren't made at a butcher shop. I had always ate quite healthy foods and lots of vegetables, so this wasn't too difficult. Instead of taking probiotics in pill form (WHY would I need another pill?) I began eating fermented foods. And no, not just sauerkraut! I ate tons of cultured dairy products. I also got on the miso bandwagon, pickled fresh vegetables, sour dough breads, dark chocolate, tea, coffee, soy sauce, vinegars, wine, beer and more! I incorporated a fermented product into every meal. Sometimes more than others, but EVERY meal. When you really start looking around, fermented foods are readily available and delicious. Smashed cauliflower with pale ale...yes, please!
By June of the following year, my rash was healed up. I still had extensive discolorations from the lesions and scarring. I also developed pretty severe reactions to sun exposure, but that's easily dealt with! I went off of the antibiotics. I really felt great.
I've only had 2 other episodes over the last years of a "herald" spot along with flu-like symptoms and called my dermatologists to be put on antibiotics immediately for a short course, with minimal rash breakouts. At those times, I always boost my diet with more fermented foods too. I still eat mainly foods I have prepared, with good choices at restaurants containing (wait for it) fermented products! I didn't/don't eliminate anything from my diet. I do not eat much fresh dairy as it makes me feel terrible. I eat lots of iron rich foods including liver/pate, kale/super greens and lentils/dry beans which I think is really healthy and keeps my immune system strong. I also eat a ton of cheeses, dry aged meats, extra virgin olive oil and grains. Since I don't have a huge sweet tooth, I don't eat too much in the way of desserts, but I don't eliminate them either.
Since wine and beers are part of my "job" I sample pretty often, but tend to be a cheap date when it comes to drinking. If you've followed my blog, you will see how much I incorporated them into our diet (I will share a chocolate red wine cake recipe this week) that make it safe for children to eat too!
I thought I'd share my experiences with you in hopes that PLEVA will get some research behind it and a cure. Also to give PLEVA sufferers another option that may help in your overall health, (and get rid of the damn rash!! Been there, it's miserable.) and get physicians on the level about food/diet for health. Everyday I have customers who are avoiding foods because their doctor told them too, without any clear reasoning behind it. Make food your friend and defender to fight for you against disease and poor health. I do not take supplements or vitamins and my latest blood tests showed my iron to be great and my cholesterol at 117. All while eating an unlimited diet with NATURAL healthy choices. Educate yourself on nutritional foods, it's so easy with the internet these days! This book http://www.trulycultured.com/trulycultured/ was a great resource for recipes and science behind cultured/fermented foods!
All my best wishes for health to you!