PLEVA/Mucha-Habermann's/Pityriasis Lichenoides et varioliformis acuta - Mothering Forums
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#1 of 6 Old 08-16-2010, 02:20 PM - Thread Starter
 
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I'm pretty sure those are all the names for this disease.

There isn't much information out there about this condition. Its basically an auto immune disorder that causes lesions all over the body but typically not on the face. They scale over and itch. Some doctors incorrectly diagnose them as chicken pox or bug bites. Current recommended conventional treatments include steroids, topical creams, and UV treatment. It has not been known to be life threatening - just cosmetic. Doctors say it randomly goes away within a few months.

That was not my case and after reading a lot of online discussions I see many people have it for many, many years. I've had it for about 5 years. I did all the recommended treatments and took every possibly beneficial medicine. I was a teenager and my mom cried over it and begged me to take every treatment. Nothing really worked and all that stuff probably did a bunch of damage. After a year or so of treatment I was tired of driving to the light booths that just made my lesions look more noticeable. My current doctors congratulated me for being comfortable in my own skin and I stopped the treatments. After a few months the lesions stopped popping up on my arms and torso. The few I get on my legs aren't itchy.

On one discussion someone said something along the lines of, "If we all could just sit down and talk about our lives we could link all of our common factors and possibly find the root and solution to our problem." So if anyone here is diagnosed with this condition PLEASE talk about any theories you think caused it and any treatments you've had that helped.

I was diagnosed right after getting a series of vaccinations that were mandatory to volunteer at a hospital. I also suffered from depression and practiced self-injury. Maybe I got some kind of bacteria from that? I'm allergic to antibiotics, pollen, and dairy - something that a lot of PLEVA victims have in common. Is it because our immune systems are too aggressive and overreact? I have thyroid issues and like PLEVA my immune system is attacking its own cells. I lived in the bay area in CA and my friend who doesn't share any of my above experiences contracted PLEVA so there may be environmental factors?

The only natural things I've tried are sunshine and tea tree oil. Sunshine doesn't really help and I don't get worse in the winter. Tea tree oil seems to help make my lesions disappear and lighten some scars.

I'd love any input of natural treatments anyone has tried.

ETA: Maybe I have PLC now since my lesions aren't itchy? I'm guessing it'd have the same treatments as PLEVA though...
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#2 of 6 Old 06-28-2011, 09:56 PM
 
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I too was mis-diagnosed, iwas told that i had scabies, then used the rx. that i was given that did not work, i was also given antibiotics & steroids, then told to only use aveeno liquid soap, which i believe helped a bit I also took a aveeno oatmeal bath, then dried off & used only aveeno lotion, my doctor was confused, i was scared, I do believe that stress & depression play a role in this disease, However, I got on Zoloft for my depression & Clonazepam for my acute anxiety, But, Guess What.  I remember being in hawaii & getting "howly itch" its what they say the mainlanders get, we are not used to that high level of sun, I have very fair skin, so I burned , my sister & my mother all 3 of us got the howly itch in hawaii. We all 3 went to seperate doctors not even knowing that each one of us had this itching problem, but you could not see it, it kept me up all night sometimes. My sister saw a very smart doctor, who told her to use dandruff shampoo.  She was told to take a shower get out, dry off, then apply dandruff shampoo all over the affected areas, wait for it to dry on your skin, put on clean loose cotton t-shirt & shorts whatever, do this right before bedtime, then get in bed let this dandruff shampoo work its magic overnight, not when you are busy during the day & may sweat it off. This worked for me.  Besides the meds for my medical conditions (depression, anxiety)  Then i started tanning & my skin is great. I still only use aveeno liquid unscented soap in the shower. I make sure my skin is never dry, that is the key thing. Good Luck

 

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#3 of 6 Old 02-14-2012, 04:25 AM
 
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Dear Lisa, Do you mind to tell us how many days in a week, should we follow the dandruff shampoo treatment as I am one of the sufferer.

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#4 of 6 Old 04-05-2012, 12:51 PM
 
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Dear Lisa, my wife has been diagnosed with Pleva. Nothing the doctor has done seems to be working and he is at a loss.  How many days a week did you use the anti-dandruff shampoo treatment and which of the many products out there did you choose?

We will try anything. Her name is Virginia (Ginni) and her e-mail is hinzev@yahoo.com .

My name is Rick and my e-mail is ricklove2fly47@gmail.com.

Thank you for your concern and time. Sincerly, Rick

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#5 of 6 Old 09-30-2012, 12:22 PM
 
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I too suffer from this, I've recently been diagnosed after a biopsy but it took ten long years to get this diognosis. I tried everything that can possibly be tried, I have been the doctors guinea pig, light therapy however is the only thing that worked for me but it's been 4 weeks since I stopped it and it's now back with a vengeance, the doctor said I can't havebit again cus of the risks of skin cancer so I'm now on creams yet again which I no won't work ad I've had them before. It us really affecting my life, I will not get into a relationship as I'm embarrassed of it, I can't do all the normal things with my children on holiday as I cover up cus I'm embarrassed and I've recently started working in a school and I'm finding I'm very worried in case they see it and think it's something more sinister. It is really getting me so down now and am willing to try absolutely anything? Is there anymore information on this anti dandruff shampoo?greensad.gif
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#6 of 6 Old 08-26-2013, 03:43 PM
 
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  Hi!!! I'v had an Itch for a Year Now :( I went to the Islands In the Pacific & when I Came Back I was Heaps Itchy!!!! I thought maybe it was the water In New Zealand or Using Soap again.....I then went to Australia....& My Itch Came Too :( Ive been Traveling & Having an Itch... It Is NO FUN!!! :/

 

 I'v Exfoliated with Sand, Small Rocks, Fenugreek, Oats, Iv taken Baths with Pinetarmol, Used Brushes 2 Scrub My Skin, I thought it went Away :) a Few days later I went Swimming In the Ocean & My Itch Was Back :( Ive Poured Vinegar on My Skin, Made a Vinegar Bi-Carbonate Coconut Oil & Lavender Concoction, Used Neem, been using Coconut Oil...:( Nothing Has Worked :'C

 

 I Finally Broke Down & Went to the Doctor.....they Said I Have Scabies :/ HORRIFIED, I thought well, mayb Now it Will Be Gone! :) Was Given Lyclear! Used It That Night, made 1 tube cover my whole body over 2 Nights! Did it Again after 7 Days....Still Itching :/ I Did This On Going of 2 Months While Washing My Sheets All My Cloths...EveryThing...for 2 Months! :/ Still Itching!!!

 

  I remembered a Doctor Years Ago Telling Me 2 Use Dandruff Shampoo After Taking a Shower & when the Body Is Dry 2 Put It All Over My Body. She Recommended "Selson Blue" & Said "your body will be Blue". She also said to Wash All My Bedding & Cloths In Hot Water!!! It Worked Then...but as of Now, I Smell Like Sulfur & have a Rash on Top of My ITCH >:-/ 

 

 Honestly This Is Fu*ked!!!! Im Over Itching Im Over Washing :( Im a Heaps Happy Person...but Im Slowely Becoming More & More Iritalbe as the Days Go On :/ Ive Been Reading Heaps & Heaps of Things!!! If Any1 Could Please HELP ME :'C Id Really Really Appreciate It, I Am Sad Now & just Want 2 Be Happy... I Even talk 2 d Lil Things & Tell Them 2 GO AWAY...They arnt Listening!!! :'C

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