Q&A Two

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Question: My son was diagnosed with PLEVA almost 1 year ago, he is 5 years old. As I read some of your question/answer section I end up being more confused. My sons first real outbreak occured the day after he had surgery on his knees to remove cysts. His whole torso became covered with bumps that never really blistered but were brownish rough spots that I wouldn't really call scabs either. The major outbreak lasted several months. He has no itching or pain it doesn't seem to bother him. Now he has white spots under his skin that really don't look like scars and almost all the time he has new bumps but they very rarely go to the brownish rough stage. He was diagnosed through a biopsy and recently had another which we have not received the results. I guess my main concern is that he was diagnosed correctly as it seems his symtoms are so differt than ones I have read about.To me it seems like he develops the white discoloration under his skin as the first step and then it goes to a bump (like a bite)and then finally it goes to a brownish spot. And not very many of his white spots ever go farther than being just white spots. But I would say that on one inch of his skin he has at least 10-15 white discolorations. Does this sound like PLEVA or should I get a second opinion?

Answer: The rash doesn't sound exactly like those I have seen but you must remember that the V in PLEVA is varioliformis and that means varied forms so the lesions can have different looks, shapes, courses. Even the dermatologists can only go by the biopsy. That is done by a pathologist. If you read many of their findings, you will see that they cannot always be certain either. If you are uncomfortable about what is happening, a second opinion may help but may not be definitive either. It is a difficult disease because we don't know enough about it. Remember what I often say is " medicine is still as much an art as a science". Hope this helps. If you have other questions feel free to contact me again.

Question: When will it end?

Answer: There is no easy answer to this question. Some people have had one episode lasting a week or less. Some people get one or two lesions in spring and fall. It does seem fairly certain that , with time the lesions become much less agressive and fewer in number when they do appear. Stress in any form seems a possible trigger so take care of yourself and learn stress reduction techniques.

Question: What is acute?

Answer: The acute stage is when the first episode occurs. If it continues over a longer term it bcomes "chronic" and is then PLEVC and the last word is "chronica". There is no definition of when in the course of the disease this occurs.

Question: Hello, I am a 34 1/2 female and was told today I have Pityriasis Lichenoides. I must say I was not nearly as upset then as I am now after reading these stories. The Dr. told me this rash would clear up with minimal scarring. I first noticed the rash 27 days ago. My questions is a little odd, my daughter at 14 months was diagnosed with (forgive the spelling) Gianotti Crostti. Her rash was strangly similar, viral...no real answers on the cause...no real treatment with the excpetion of an antihistime for the discomfort. Her bout this this rash affected the development of her teeth which has lead to my 7 now seven year old having her 6 year molars crowned and stained front teeth. Are you aware of any similar complications that result from this rash? I greatly appreciate your web site and will be checking if often for updates!

Answer: Some people do seem to clear and have no further problems according to a few of the people who have written. Others are not so lucky. There is no information on why this happens. The ones who are continuing to have problems are the ones that would be more likely to contact the site so their questions would be about longer term problems.

Gianotti Crosti Syndrome is usually precipitated by a virus in other words, some action of the virus causes the rash to appear. Stress on the immune system may be one of the precipitating factors for PLEVA, too. The rash would appear similar since it is a Lichenoides type rash. There seems to be no information available about staining of the teeth. Did she have antibiotics for the rash and were any of them tetracycline based? Tetracycline antibiotics do stain the teeth. I will continue to search for information.

Question: My doctor just diagnosed me with pleva and prescribed tetracyclene. He said that it seems to work but they don't know why, or if it will prevent future outbreaks. What do you know about this treatment? Also, in an earlier post you mentioned herbs, which herbs have been helpful? Is anything helpful in fading the scars? Thanks.

Answer: Tetracycline is an antibiotic that helps alot of skin diseases and is used frequently by dermatologists. If there is any infection in the lesions, it helps quite dramatically. Once the infection is gone it is less effective. I had nerve pain related to the appearance of the lesions almost like shingles. I used tinctures of several herbs which work on the discomfort, reduced the stomach upset from the other meds, and would help me sleep because that was another problem. They included: St John's Wort, Valerian, Vervain, Scullcap, Ginger, Licorice and Siberian Ginseng in a formula I developed after doing alot of reading. I also used a skin oil that included Lavender and Tea Tree essential oils, Vit E and almond oils again in a formula that is said to regenerate and heal skin lesions. If you are intereseted in herbs, oils and books, you can check out Glory of the Garden, your local library should have herbals, the Herb Research Foundations Natural Healthcare Hotline at (303)449-2265 answers questions about properties and uses for conditions or illnesses, and your yellow pages may lead you to natural and alternative sources.

Question: My daughter has had pleva for a little over a year (consistant). There has never been a time when her lesions have totally healed. She does have periods when she has more lesions and these seem to occur when she is more stressed. For instance holidays. We have tried all kinds of things. Antib. did nothing for her. We have tried numerous herbs and did find one with tremendous effects. (Collidal Silver). I'm not sure I'm spelling this correctly, anyway when she took this she had immediate results. She would go from having over 50 lesions on her legs alone to only having 7 total on her body. However; the doctors told us we could not use this because your body cannot get rid of the silver and it builds, thus causing harm later. This was a major defeat for us because they had no answers of what we could try. Also they did two biopsis on her and found that they were not consistant with pleva, but the looks of the lesions and all of her symptoms matched perfectly. They wanted to do more biopsis's, but I couldn't put her through anything else. Emotionally at that time she was not handling it well. Since then we have been using a tanning bed in our home to help reduce the amount of infection in the lesions. We have found that the dryer her skin is the fewer lesions she gets and it also keeps the infection down. We only use whit dial soap on her and she cannot have any lotion on her at all. In doing all this it seems to manage it better than anything the medical field had to offer. I would appreciate any help. The doctors told me this should go away before she hits adolescents, but from what I have read in here it doesn't sound that way. Is there any hope for this to ever heal or will she have this the rest of her life?

Answer: I know the frustration you are feeling. I have had this for three years now. It does get less troublesome with time. My Cousin got the disease about thirty years ago. He stil gets one or two lesions in the spring and fall, but they are minor and clear up quickly. He doesn't use anything on them now because they are minor. Some people have no lesions in time.

Your doctor is right about the preparations with metals like silver in them. They should not be used on long term. I have tried all kinds of things and the herbal ones made the difference for me. Some I have used recently that heal them faster are echinacea tincture directly on the lesion and a skin prep with a mix of lavender, almond , vitamin E, and tea tree oils I made up. Check out the lavender line skin oil on http:www.de-inc.com/~begetc/gotg.htm. The "On-the Spot" seems to help me too.

Remember tanning can be a problem with the skin over time also. I know it feels like everything that works isn't good, but keep the faith, time should make a difference. Remember to keep fluids up, a good diet and proper sleep. They are the basics for a functioning immune system.

Question: I am fortunate to have found this site because it may help me. I also can share my experience. My unusual rash appeared 8 years ago as I was going through a divorce. Three different doctors diagnosed 3 different situations...parapsoriasis, pleva, and folliculitis. In 8 years I have never been completely lesion free. I have gotten down to 3 or 4 dots. The frustrating thing is that they follow a very precise "lifespan". When I see the first sign I know I will be cursed with it for at least 4 months duration. PUVA cleared up the first bout dramatically. Ever since then, PUVA is ineffectice. A fourth doctor recently said again that it is PLEVA. Antiobiotics have stopped new lesions from appearing. Pesky ones he freezes off and they are gone in 10 days with minimal scarring. I am so curious as to the cause of this malady.

Answer: As you probably noted in the information on the site, the cause of these lesions is unknown and there is no known cure. After three years, I'm am still plagued with the "croppings". I have turned to herbs to help myself because traditional medicine could not. I have had some success and have started an herb, spice and related products business because of the problems. I do feel that stress is a factor in this disease from the responses I have had on the site. If you have other questions after reading the information on the site, please feel free to contact me.

Question: Just wanted to complement you on the fine job posting questions and answers...it appears there is indeed a following here - my question, is there a common denominator working? It just seems so strange that there are some of us out here who have gotten this crazy ailment - and where it appears on people's bodies! I had only one on my abdomen and the rest (5 or so "bite-like marks" on my left arm only - which developed into open, scabbing sores and are just now healing after five months. The only thing I can think of that might (and I use that term loosely) have triggered this is approximately one month prior to the first onset, I had laser surgery for vein III dysplasia - nothing serious, outpatient, and no problems healing. What is the average age and gender of the folks' responding to this site? I am a 50 year old female and otherwise in excellent health. I am simply baffled by this. Anyhooooo, thanks for the information contained here - it's nice to know there is a place to research this...certainly more info than I could get from the docs - they too seem quite unknowledgeable about this. Interesting!

Answer: According to the Literature, the disease is more common in males, and usually in their 20's. However, the sampling that has answered the questionnaire are equal male and female, range in age from 2 to fifties, and range in lesions from a few like yours, to many over the whole body. I am going to put more detailed information from two different derm books in the information section. When You read it, you will be aware that they don't know enough about the disease. In fact, I think he could have written "I don't know" for the etiology section.

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