15 March 2012

Fermented Foods & a disease called PLEVA

This post isn't recipes or cute photos of my little dog, so feel free to skip over it if you like.  I'm writing this post mainly for other folks out there suffering a rare immune disorder called PLEVA.  This post is also about my experiences with PLEVA and what role I believe food, specifically fermented foods, played in my remission status.

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!               



19 comments:

  1. I am sorry to hear about your PLEVA experience, but quite impressed with your proactive methods of combating its grip. Thank goodness you were able to get a relatively fast correct diagnosis. Natural solutions to nature's problems always seem to work best, and prevention is much more pleasant than dealing with outbreaks. Especially when it can include cheese, chocolate, and wine.

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  2. Wow! I've never heard of PLEVA. Thanks for helping get the word out there. You have done a very good deed today. xo!

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  3. I just got diagnosed with PLEVA and I haven't gotten much help on the internet but your post has helped me a lot and I am going to try everything that I can to make this get better. Thank you!

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    1. I truly hope diet changes works for you. FINGERS CROSSED I know how downright miserable PLEVA can be, but try not to let it get you down! Mine lasted less than a year of the bad rash and minor outbreaks after that. I haven't had a breakout in about 4 years now. One of my more recent blog posts talks about my recent retina problem and the drs. were sure it was immune related and were ready to prescribe prednisone, however, my immune tests came out GREAT and I still think my diet is to credit! Hopefully some reasearch will be forthcoming soon. Please keep in touch and let me know how things are going for you!! erika@boulevardmarket(dot)com

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    2. Hello Erika, thank you for this. I hzve suffered pleva for a year now. No one can understand the misery accept for a suffer. The steroid shot are a waste of time.

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    3. I don't think I've posted this, but I went to a new dermatologist last year and discussed PLEVA with him because he specializes in those types of diseases. Dr. Fivenson in Ann Arbor Michigan and you can google his contact info if you're interested. He did tell me that normal PLEVA cases USUALLY clear up within a 2 year time frame and never return :) He had some other info long term that you should be aware of and I'm sure would be happy to email you or your current derm. I agree that the misery is tremendous and I totally feel for you. Just FYI I recently have had some probs with B12 deficiency from taking long term antibiotics with the PLEVA so maybe be aware of that issue in the future. Good luck with all and fingers crossed for a speedy recovery, clear skin and good spirits for you. :) E

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  4. hi, i have PLEVA now and and after healing from it the rash started again. i don't know what to do. if you know anything about how to heal from it please help me. my mail is ola.elmesiny@system.ae

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    1. I'm sorry your rash has returned. That really stinks. I do think if you have gotten rid of the rash in the past, it's likely your body can kick a** and heal again. Unfortunately, I only know what worked best for me, but don't give up trying a fermented food diet like I did or using medication either. Good luck and fingers crossed for you!! Take Care-E

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  5. Thank you so much for this post. My 7 year daughter was diagnosed this year and I feel like we've been in limbo ever since. Her dermatologist also showed everyone in the office her "rash"....since they had never seen an actual case before (she was dressed, though). I do not want to put her on steroids or take her to a tanning bed(2 things that I've seen recommended over and over). Her "rash" has gone away and we have tried to adopt a "mostly" vegan diet...but I am very interested in researching fermented foods. Thank you again for sharing.

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    1. Michelle- So sorry to hear of your 7 year old dealing with this...I just mentioned to another post that once your body has healed itself from the rash, my experience has been you can continue to do so. Please don't get me wrong with this post, I still believe the antibiotics helped me too, and gave my body time to allow fermented foods to boost my immune system. I have never eliminated foods, except boxed/prepared stuff and we purchase as much meats/eggs/vegetables that are sustainably farmed as possible. Good luck and hope all continues to go well for you and your family! Take care- E

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  6. Hi Erika, really great information and blog. I just turned 30 this year, and prior, never really had any major health issues (well, a slow GI track and some lichen planus....but hey, I thought this was smooth sailing in retrospect!).
    All of the sudden, the day after one of my usual jogs outside, I woke up the next morning with very similar symptoms as you described. Total life changer. Now formally diagnosed, I'm struggling to find solutions for clearing up my PLEVA outbreak. It's been about a month, and very little progress. We should chat. I'd love to get your feedback on PLEVA maintenance through nutrition and diet management. Let me know how best to contact you. Cheers Erika! Sincerely, Kelli

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    1. Hi Kelli- You can email me at erika@boulevardmarket.com or message me thru facebook either The Boulevard Market or Erika Aylward and we can "chat". I have some new info from a derm that specializes in PLEVA and my progress of nutrition and PLEVA. I feel for you and look forward to speaking with you soon-E

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  7. I have been dealing with red spots on my body for over two months now. It started of with a creepy crawly feeling which led me to believe I has scabies or bed bugs. Unfortunately, my biopsy came back to the dermatologist today as positive for pleva. On heart broken seeing everyones post scattered all over the internet on how their is no easy fix. The Dr tried to put me on meds, but my fear of liver damage out weighed my self esteem. I can't wear short sleeves, or shorts. Thankfully it's still freezing so it's not detrimental...yet. Starting the bed tomorrow while I begin my search for a cure. I pray we all find relief, as I believe there is a cure. If fermented foods are a start or a step towards progress I'm all in. Best wishes to everyone!

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  8. I was diagnosed last year myself and was extremly upset. The first doctor never saw anyone with it and the second has but didn't seem to have much success in treating.
    Very interesting that you were able to retain a meat based diet. I have to stay away from meat sans fish and occassional eggs for now. Will look into the fermented diet though alcohol is also on my banned list... i hope a definite cure can be found soon. This is not nice to live with at all!
    I am concerned about the year long antibiotics though. After 7 weeks of antibiotics i stopped cause i kept flaring up and getting new ones. And they hurt dammit! Worse yet the itching. I too have cut (or trying to) food with preservatives. Tinned food is out for sure. I am also in the process of doing a liver and blood cleanse. So far, no more flares and i haven't noticed any new ones thank God. How did you treat with the scars? I'm using soft candle which has some progress thus far..

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  9. I would love for you to share any info that your dermatologist who specializes in PLEVA gave you. My son has suffered with it for two years now. My email is katehoag77@gmail.com. Thank you!

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  10. Erika
    I have been dealing with PLEVA off and on since 2002. I have tried antibiotics, indoor sunrays, creams, steroid injections and pills. For long periods I had no problems, but in the past 6 months I have had serious breakouts!!
    I am too from Michigan but moved to North Carolina 8 months ago. I would love some information on natural ways to get rid of the rash. I think the diet has a lot to do with the rash, but haven't figured out what foods may be triggering it. Ironically I am anemic also.
    Do you have a website where I can go to get some information? Any information would be greatly appreciated....

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  11. I don't have any additional information unfortunately. Have you had your B12 tested? Since you have anemia b12 can be a problem for skin especially after long term antibiotic use. Long story short mine was low and caused lots of skin problems. Your level shouldn't fall below 500 according to my neurologist.i will post something soon about b12 struggles....ugh. good luck with everything and maybe the fermented foods will help?

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  12. Hello Erica...

    Thanks for sharing your experience regarding PLEVA. I am so concerned as my daughter had his last year when she was 7 and its been a year she is still suffering from it...I have referred dozens of dermatologists but still not cured.As she has rashes from the neck till the toe, he rash is red later it has scabies and ends up decolorizing skin.They are non itchy rashes and they recovered twice but appeared again. She have been given lotions , anti allergies, shower gels but still not cured. Does it actually stays for 2 years as the dermotologists asked me to be patience . But being a student of grade 3 its really tough for a child to explain every one why is she suffering from it as students teachers friends keep on querying about it.What is included in fermented food please give some idea.
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  13. Hi all, i posted earlier this year on my encounter with PLEVA. I stopped the antibiotics and started drinking bourdock and sarsparilla tea which stopped the flares and new eruptions. The existing ones dried up in a couple days. I then did a natural based liver and kidney cleanse. Happy to say since then i havent had a reocurrance and really hoping it stays like that. I've also changed my diet to be less processed foods.
    for the marks i use a mix of natural oils. It's working but taking its time in doing so.

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