PLEVA, Mucha-Habberman's disease
Concern Mom

Conway, PA

#366 Jan 27, 2010
Thanks Barb, Steve and Ivy......My son goes to an immunologist tomorrow. I plan to share this site with him.
Ivy

Flushing, NY

#367 Jan 27, 2010
Concern Mom wrote:
Thanks Barb, Steve and Ivy......My son goes to an immunologist tomorrow. I plan to share this site with him.
Dear Mom, I wish your son all the best. Good luck tomorrow with your son's immunologist appointment. I'm eager to know what his point of view is on pleva and what test he might request. Please keep us posted on your son's progress.
Lindadiane

Huntington Beach, CA

#368 Jan 27, 2010
Hi Ivy:
Were you applying the Muprocin to every spot? How many did you have. Steve has more than me, but I have alot also. Something just occurred to me and I am wondering if there is a connnection with anyone else...two months prior to my first "bump" my mother was in the hospital with pneumona. I was there caring for her, bed pans, etc. Was anyone else near a hospital prior to their outbreak? Also, how many of you have had chronic sinus problems over the years?
Sue H

Leeds, UK

#369 Jan 28, 2010
Lindadiane wrote:
Hi Ivy:
Were you applying the Muprocin to every spot? How many did you have. Steve has more than me, but I have alot also. Something just occurred to me and I am wondering if there is a connnection with anyone else...two months prior to my first "bump" my mother was in the hospital with pneumona. I was there caring for her, bed pans, etc. Was anyone else near a hospital prior to their outbreak? Also, how many of you have had chronic sinus problems over the years?
Just wanted to say that I believe stress does add to this disease. My Mum also was in hospital in Nov/Dec, she died of pneumonia before Christmas, amongst other things. I've got worse and assumed it was more stress orientated, who knows!
Sue H

Leeds, UK

#370 Jan 28, 2010
Also my daughter has the PLC version of this, and she has suffered chronic sinus most of her adult life, plus headaches. She's dairy intolerant.
Ivy

Flushing, NY

#371 Jan 28, 2010
Lindadiane wrote:
Hi Ivy:
Were you applying the Muprocin to every spot? How many did you have. Steve has more than me, but I have alot also. Something just occurred to me and I am wondering if there is a connnection with anyone else...two months prior to my first "bump" my mother was in the hospital with pneumona. I was there caring for her, bed pans, etc. Was anyone else near a hospital prior to their outbreak? Also, how many of you have had chronic sinus problems over the years?
Hi Lindadiane, Yes, I was applying the muprocin to every spot. I had too many spots to count. It was a lot not as many as Steve or as dark as his. I had them on all my limbs, butt, torso and neck. Like Steve I never had any above my neck or on the palms of my hands or feet. I do suffer from seasonal sinus headaches in the Sprint & Fall. I treat it with Sinus Advil and my headache goes away. My pleva outbreak was in May 2009 and I do recall being in the Hospital ER overnight due to dehydration and flu like symptoms. I was discharged the following day. When I was in the hospital ER I remember seeing a man with what I now strongly beleive was a pleva rash all over his body. I will always wonder if we had the same treating physician? I know that when I had peva no one in my family had it. Just me! It's possible that when you were in the hospital visiting your mother you could have contracted something(virus) that contributed to your pleva outbreak. Especially, if you were stressed out due to your mother's pneumonia. I have read that stress does compromise the immune system, which can make us more susceptible to contracting pleva or any other medical condition. Do you take vitamins? How was your blood count when you had a lot of pleva spots? My white blood cell count was low.
Ivy

Flushing, NY

#372 Jan 28, 2010
Lindadiane wrote:
Hi Ivy:
Were you applying the Muprocin to every spot? How many did you have. Steve has more than me, but I have alot also. Something just occurred to me and I am wondering if there is a connnection with anyone else...two months prior to my first "bump" my mother was in the hospital with pneumona. I was there caring for her, bed pans, etc. Was anyone else near a hospital prior to their outbreak? Also, how many of you have had chronic sinus problems over the years?
Lindadiane, I left our that I had been in the hospital ER in "March 2009". Yes, two months prior to my outbreak. It does sound similar to your situation.
Concern Mom

Beaver Falls, PA

#373 Jan 28, 2010
Took my son to an immunologist today. He told me he couldn't do anything because he deals with people that have little immune systems. Pleva people have an overreactive immune system of the T-cell. So he sent us to a rhuematolgist today. She talked about that oral chomotherapy drug I think she said it was called methotrxate. I said no. They did put him on naproxine for inflamation. He has been on this before and it only helps the headaches and leg pain not the bumps. So I guess you could say we didn't get to far.....
wendy

Burlington, MA

#374 Jan 28, 2010
paul e hampstead nh wrote:
I would like to ask everyone if they can remember getting any kind of innoculation prior to
their outbreak .. like a flu shot, pneumonia shot, tetnus shot, etc..etc.. If yes, what was the
injection and how soon did you get it before the outbreak . I believe this information could be
very helpful . Thank you
I received a diptheria/tetnus/pertusis vaccine May 2009, and broke out in a rash 3 days later that was eventually diagnosed as PLC. The doctors did not seem interested in exploring that connection, thought I was advised not to get any live vaccines or the dtap vaccine again.
Emmamae

El Cerrito, CA

#375 Jan 28, 2010
Wendy, that is what our pediatric derm told me for my daughter when she had full blown pleva, that was she was not to get any vaccines at that time. Now it is over a year later and she is telling me it is OK for her to have her boosters but to make an apt with her for a 2 week follow up after. This is not making me feel very confident. I asked her if the booster could cause her pleva to come back and she said anything could cause it to come back. ugh. I am completely on the fence about getting her these boosters. We were so lucky her pleva went away, but I always have the icky feeling if she ever got it again, it wouldnt go away so easy the next time. Has anyone out there tried this Bromelaine?( spelling) it is some pinnaple extract that is suppse to work very well and has anyone used it on children?
Steven McNellis

Frankfort, IL

#376 Jan 28, 2010
Hello everybody!

I wanted to share my personal webpage I created this past week. Hopefully some of you will find the information beneficial. Feel free to share stories/advice/info in my forum. I'm hoping to help a lot of people.

http://www.plevadisease.com/index.html
Kim

Blue Springs, MO

#377 Jan 29, 2010
I have PLEVA and had 3 biopsies. They put me on 999mg of Erythromycin. It was making me sick but it worked. Then I went back to the doctor (it was getting worse). My Dermatologist told me to stop using antibacterial soap and the loofa (spongy thing to wash yourself)as the soap was drying out my skin and the loofa was taking off the old skin. He told me to use Cetaphil soap and lotion (can be bought at wal-mart). I have been using both of these and my Pleva is gone. The lotion is great. He did tell me that if it came back, then I would have to be on the antibiotics for 6 months to a year. You really should try that lotion and soap. Hope this helps. Kim :)
Ivy

Flushing, NY

#378 Jan 29, 2010
Concern Mom wrote:
Took my son to an immunologist today. He told me he couldn't do anything because he deals with people that have little immune systems. Pleva people have an overreactive immune system of the T-cell. So he sent us to a rhuematolgist today. She talked about that oral chomotherapy drug I think she said it was called methotrxate. I said no. They did put him on naproxine for inflamation. He has been on this before and it only helps the headaches and leg pain not the bumps. So I guess you could say we didn't get to far.....
Dear Concerned Mom, Has your son been seen by an "Infectious Disease Specialist(IDS)"? If not I would suggest that he be seen by one. That's the type of doctor that my dermatologist referred me to after my outbreak with pleva. An IDS will do all types of blood test. They will check your son's t-cells and they will find out how your son's immune system is functioning. Remember pleva is the result of the t-cells forming on the outside of our skin. So it would make sense to be seen by a physician in that field (Pediatric Infectious Disease Specialist). Good luck and take care.
Ivy

Flushing, NY

#379 Jan 29, 2010
Kim wrote:
I have PLEVA and had 3 biopsies. They put me on 999mg of Erythromycin. It was making me sick but it worked. Then I went back to the doctor (it was getting worse). My Dermatologist told me to stop using antibacterial soap and the loofa (spongy thing to wash yourself)as the soap was drying out my skin and the loofa was taking off the old skin. He told me to use Cetaphil soap and lotion (can be bought at wal-mart). I have been using both of these and my Pleva is gone. The lotion is great. He did tell me that if it came back, then I would have to be on the antibiotics for 6 months to a year. You really should try that lotion and soap. Hope this helps. Kim :)
Hi Kim, My infectious Disease doctor told me to stop using all "Anti-Bacterial" soaps, body wash etc... This is how it was explained to me: "We are using so much anti-bacterial soaps and cleaners on our body that we are literally KILLING OFF the GOOD bacteria that is suppose to be on our skin to protect us". Since we don't have the good bacterial to protest us the bad bacterial has full control. I have stopped using anti-bacterial soap and body wash on my body. I only use it on my hands. The Infectious Disease doctor told me that she nor her entire family use any type of anti-bacterial soaps and/or cleaners.
Lindadiane

Huntington Beach, CA

#380 Jan 30, 2010
Hi Ivy: That is very interesting because I am a cleaning freak and I work as a teacher and use hand sanitizer all the time because of the kids' germs. Also, before my Pleva got very bad I was going to the gym alot and was showering and using the loofah twice a day since it was during the summer. I also wanted to ask everyone more info about food allergies. I have noticed my skin itches much more after meals. My husband has been convinced for some time this is food allergy related. The allergy or sensitivity could be triggering my immune response. My second cousin has a gluten allergy and it runs in families. Has anyone else noticed more itching after eating? Has anyone gone gluten free? I am going to try because if you read about gluten sensitivity it can cause neuro problems, impacts T-cells, etc. While I have not had many of these symptoms, some or all of you have. I was really surprised by the degree and spectrum of problems it can cause. It is very hard to diagnose and even with a biopsy a "sensitivity" will not show up.
Concerned Mom

Beaver Falls, PA

#381 Jan 30, 2010
No, Ivy we haven't been to an IDS. I never thought to go to one because Pleva isn't infectious to other people. However, I notice that we have been to so many specialist and each seem to just pass us on to another specialist so IDS might be worth a shot. I am thankful for all of your advice. I think it is important to keep sharing information since it seem like we are our own best avocate.

Since: Jan 09

Valdez, AK

#382 Jan 31, 2010
Concern Mom wrote:
Took my son to an immunologist today. He told me he couldn't do anything because he deals with people that have little immune systems. Pleva people have an overreactive immune system of the T-cell. So he sent us to a rhuematolgist today. She talked about that oral chomotherapy drug I think she said it was called methotrxate. I said no. They did put him on naproxine for inflamation. He has been on this before and it only helps the headaches and leg pain not the bumps. So I guess you could say we didn't get to far.....
I still think that exposure to glycol ether causes many autoimmune and often seemingly rare ones. SO, consider things like glyconutrients such as Ambrotose. It is in the glycobiology field and it is supposed to help with cell to cell communication. The big issue you are needing an answer to is, "What can stop a body from going autoimmune?" So far I see immune suppression and pain medication coming forth.

Gamma globulin seems to help. When kids get too much exposure to the glycol ethers in carpet cleaning chemicals, and come down with Kawasaki Syndrome (Such as Jett Travolta did at age 2), the doctors often give gamma globulin and they live; many times they can live in health as though the exposure never happened.

When there is autoimmune platelets (ITP), gamma globulin causes them to THRIVE. Doctors do not know why. http://www.valdezlink.com/pages/autoimmune.ht... Also, AHIA (Autoimmun Hemolytic Anemia) is a similar issue: autoimmune action on the red blood cells. SO wouldn't gamma globulin help this? I suspect this is the anemia of CFIDS, CFS, FM that doctors don't generally find. This is because there are too many autoimmune issues starting up at the same time (then 'the numbers' of blood work don't give a correct picture picture. There are also inaccuracies in medical thinking: for this population, very high white blood cell counts are an anemia sign, not an infection per se. http://www.valdezlink.com/pages/bodytemp.htm

What we call 'the flu' is not caused by a virus, but by glycol ether exposure. This is a list of 'flu symptoms.' You will note that they are a combination of exposure to glycol ether (& the anemia not diagnosed). http://www.valdezlink.com/re/health/anotherca...

The most commonly used glycol ether is 2-butoxyethanol. It is too strong in many cleaning products. Some of you here have the autoimmune issue discussed here because of exposure to glycol ether. Hand sanitizers are often about 70% ethanol (a mild glycol ether / same chemical in drinking alcohol). Exposure to glycol ether is primarily at the cuticle areas and through the eyes. However, I think you find it in prescription prenatal vitamins; many baby wipes, etc.

Glycol ether dries out the skin (defats the skin), damages the blood, damages the central nervous system, causes tumors here there 'n everywhere, damages the kidneys and liver. When eventually (with more and more exposure) cancers show up; people will not be dying of the cancer, but of the blood anemia: shortness of breath, rapid heartbeat,'the chills' are not from cancer, but from 'the anemia' that glycol ether such as 2-butoxyethanol causes. Memory loss, by the way, is a stand out harm of this chemical exposure.
Prasenjit

Aizawl, India

#383 Feb 3, 2010
Hi im 21 yrs old and suffering frm PLEVA for nearly 3 years and from last 1&1/2 years it has dried up.My skin spots are dried up and remains nearly like that.Im out of medicine from last 1 year. so what to do now?? Please tell me..
Ivy

Flushing, NY

#384 Feb 4, 2010
Prasenjit wrote:
Hi im 21 yrs old and suffering frm PLEVA for nearly 3 years and from last 1&1/2 years it has dried up.My skin spots are dried up and remains nearly like that.Im out of medicine from last 1 year. so what to do now?? Please tell me..
Dear Prasenjit,

Sorry to hear about your pleva. I know it can be very frustrating. I would suggest that you go back to your doctor so he can give you another prescriptions. What medicines was he treating you with last time you had the pleva?
Bill

Mission, TX

#385 Feb 4, 2010
My 8 year old son has had PLEVA for about a year and a half. It first started in summer of 2008. Dermatologist diagnosed after plug biopsy. Oral and topical erithromyacin antibiotics did not help. Steroid cremes dis not help. We began UVB-narrow band radiation in Ocvtober 2008 and that has controlled the lesions. We use a panasol (National Biological) lamp, and though expensive, it is good to have something that (finally) controls the lesions. Maintenance dosages of 5 minutes front and back every few days seems to be the level that keeps the disease at bay.

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