Lindadiane

San Fernando, CA

#526 Nov 7, 2010
To all: Do you now, or have you in the past, had elevated cholesterol levels?
Lisa

Jamaica, NY

#527 Nov 8, 2010
Lindadiane wrote:
To all: Do you now, or have you in the past, had elevated cholesterol levels?
Lindadiane, Yes, I have had elevated cholesterol before, during and after my pleva outbreaks. Why do you ask? Have you found a link between them?
Barb in Naramata

Penticton, Canada

#528 Nov 8, 2010
Hi lindadiane.
Was thinking of you the other day and wondering how you were doing.
I have been doing better this last couple of years thankfully. I have super high cholestrol.
I managed to get it down 25% by diet, vitamin B, and taking Guggulipid.( that is a resin from an aromatic tree ). I was told that it was impossible to get Cholestrol down more than 15% by that method, but I was rigid and ate nothing but fruit, veggies and grains. All done from scratch. Anyway. I have now been on Lipitor for years and have my inflammation level down to a level my Doctor likes.
I also take Thyroid and have my multi B shots. I also take Coenzyme Q10 because of taking the Lipitor and 1000mg of Vitamin D.
Have to say that the PLEVA's are barely with me anymore. I have a few every now and then, but if I didn't know they were PLEVA's I might think they are teenage acne LOL.
Anyway. Since my big dose a few years ago things have gotten a lot better.
Was interested to see that someone else has had this thing for thirty some odd years. I seemed to be the only one having it for so long.
To the new people reading this. Don't get discouraged. It does come and go, but if you just assume that it will go it makes you feel better and it doesn't get you down. I still think that stress is the number one initiator of this whole disease. I still take care of my skin and put aloe vera cream on almost daily. Also loofa when I shower which seems to make a difference and also gets rid of the dry skin which I seem to have. Anyway you guys. don't give up the fight. Hang in there. Keep smiling and enjoy life to the fullest. Hug someone every day. I now have two dogs again which make me go out doors every day for walks and I believe that that really helps. Hugs to all.
Brandy

Lexington, NC

#529 Nov 10, 2010
My daughter was diagnosed with PLEVA when she was 3. She is currently 9. I have read so much about it and it is all conflicting. Is it or is it not an auto immune disease? She currently has a full thyroid and they are running tests. Does anyone know how this might relate? My dermatologist says that it is not auto immune. Any help would be appreciated.
Kim

Overland Park, KS

#530 Nov 10, 2010
I have had Pleva for 2 years and went thru the whole biopsy thing, the antibiotics, etc. My dermatologist recommended that I use Cetaphil soap and Cetaphil lotion. My Pleva has not come back since. It is a little more expensive than the normal bar soap but it works. You can buy it at Wal-Mart. Hopes this helps. Kim :)
Lindadiane

San Fernando, CA

#531 Nov 10, 2010
Lisa wrote:
<quoted text>
Lindadiane, Yes, I have had elevated cholesterol before, during and after my pleva outbreaks. Why do you ask? Have you found a link between them?
Hi Lisa: My cholesterol is also elevated. Another woman I know who had Pleva also had elevated cholesterol. I started taking Red Yeast Rice for the cholesterol and noticed my Plevas started popping like crazy. I am just wondering if there is something our systems are not able to propery process the cholesterol. Maybe that's why the Bromelain digestive enzymes they used in Italy worked. I also have VERY dry skin like barb. Does anyone else have that problem?
Barb in Naramata

Penticton, Canada

#532 Nov 25, 2010
Hi Gang
Lindadiane I was wondering if you knew what happened to a whole bunch of women that were on the previous site that I locked onto about five years ago. They were a remarkable bunch of people and helped me through a really rough dose of Mucha Haberman. I remember Granma Ichy and think you kept in contact with her. Did you and do you have any idea of how any of them are ? Otherwise we are in dark cloud with -16 c temperatures , snow and ice so hope we make it out the other end. Even walking the dogs is a major hassle and being bundled up to withstand the cold is no good for the bumps. Anyway. Other than that still going strong and waiting for the new year. Hope you are doing the same. Hugs Barb.
Lindadiane

San Fernando, CA

#533 Nov 27, 2010
Hi Barb: I never heard from Grandma Itchy after they closed the other site. I am still friends with Cath, the woman from Australia. I am so glad to hear you are doing well, and at least we are still in contact!=)
paul e hampstead nh

Salem, NH

#534 Nov 28, 2010
Lindadiane wrote:
Hi Barb: I never heard from Grandma Itchy after they closed the other site. I am still friends with Cath, the woman from Australia. I am so glad to hear you are doing well, and at least we are still in contact!=)
Hi Lindadiane : I would like to ask you about the
tetnus vaccine you talked about getting just before your outbreak . I too experienced the
same situation. Do you know of any others you may have come in contact with that also had
a vaccine administered just before their outbreak.. Thank you . Paul from Danville NH.
nikki

Philippines

#535 Nov 30, 2010
what should I do?I had this pleva 7 years ago...I tried medicines,It didnt work...I am afraid that my boyfried will not marry me because of this....CURE FOR PLEVA PLEASE!!!!
Barb in Naramata

Penticton, Canada

#536 Dec 1, 2010
Dear Nikki.
I am giving you advice that you should think about.
I have been married to two men. One for twenty six years and one for over twenty years.
I have been plagued with PLEVA and far worse stuff all those years. Both men have not ever made any mention of not wanting to be part of my life and take care of me because of PLEVA. If you have doubts that a man does not love you because of your PLEVA then you should look elsewhere for love and companionship. I don't usually lecture people, I am a musician, but your letter struck me. Take care of yourself and don't wait for a cure any time soon. I have been diagnosed with it for forty years and nothing has changed in that time except that there seem to be many more people that have it. Hugs.
Lindadiane

San Fernando, CA

#537 Dec 1, 2010
Hi Paul: When I mentioned the tetanus shot to my doctor he decided he did not want me to get a flu shot.
Nikki: I have had PLEVA for 7 years too and I have been married for nearly 30 and my husband says he doesn't even notice the bumps. He's very sweet and understanding that Im not jumping out in public in my bathing suit, etc. Marriage is for better or worse and if you BF won't marry you because of this, well, he certainly isnt going to stick around for something worse! Think about it. <3
Barb in Naramata

Penticton, Canada

#538 Dec 2, 2010
Hi Lindadiane.
Interesting that your Doctor does not want you to have the flu shot. My Doctor says the same thing. Also about the shingles shot. The only thing that we had decided that I should get was the Pneumonia shot, which I did, which sort of knocked me out for about a week. I am super sensitive to anything. I took an antibiotic and wound up in hospital. Seems I am super sensitive to that as well. So beware.
Kelsey Bowling

Shepherdsville, KY

#539 Dec 5, 2010
paul e hampstead nh wrote:
<quoted text> Hi Lindadiane : I would like to ask you about the
tetnus vaccine you talked about getting just before your outbreak . I too experienced the
same situation. Do you know of any others you may have come in contact with that also had
a vaccine administered just before their outbreak.. Thank you . Paul from Danville NH.
I recieved the chicken pox vaccine and recieved the outbreak a couple days later. Very weird on another website I found, it seems almost common and all the doctors are saying that it is mere coincidence.
Sue H

UK

#540 Dec 5, 2010
Kelsey Bowling wrote:
<quoted text>
I recieved the chicken pox vaccine and recieved the outbreak a couple days later. Very weird on another website I found, it seems almost common and all the doctors are saying that it is mere coincidence.
The doctors don't have a clue Kelsey, my daughter got it after a bcg (tb) jab. I got it following shingles! We've both had it now off and on for almost fifteen years. I'm told it's rare in families, but no one has bothered to properly check out what we say.

Without a doubt chicken pox is involved somewhere, along with lack of immunity. My derm told me that yeast was also a factor, but they are no further forward now than in the early 1990's.

Since: Dec 10

Palmerston North, New Zealand

#541 Dec 5, 2010
Hi everyone, great to see there is a place to talk about this!
I've just found out that the rash I've had for 32 years is PL, after finally having a biopsy done.
I got my first breakout at 16 yrs (I'm 48 now). I just had this very persistent patch on the back of my thigh on one leg only, it weeped, itched, and never went away properly and would flare up regularly. After a number of years (maybe 5?)that patch cleared up and it came up again beside my knee on the other leg, it moved places a couple of times over the years! It never held me back, it was just annoying and although always there it did get a lot better over the next 10 years with just the occasional breakout of maybe 5-10 spots.

Moving forward to my late 20's, I got run down after travelling (rough) through Eqypt (had some shots too before I left). Lost a lot of weight, and when I got home the rash started to get worse again suddenly, broke out over all my extremeties, got massive infections, pus, throat infection, lost about 3-4 stone in weight, food was going straight through me. Really sick with it.
Serious candida infection also. Went off all sugar and yeast, took nilstatin powder, and me and the rash gradually got better over the next few years. Had two babies a few years after that and my rash disappeared almost totally for 10+ years - Yeahh...

Now in my late 40's, it's come back! Had a big breakout all over my arms and legs, 100's of them. I'd been feeling unwell for a couple of years, with joint/muscle pain and fatigue. Drs. couldn't figure it out, only thing that showed up on tests was a mild "iron overload", which has been dealt with now by phlebotomy (bloodletting). Now the spots are back I'm feeling a lot better, like it got rid of whatever was ailing me. Very strange.
They seem to be healing well, with not too much scarring.

Sorry for the long rant, but hope it helps people to know what happens over the long run. Just as a note, I had a splenectomy at 13 years for trauma, so I have huge amounts of T-cells/lymphocytes in my bloodstream anyway, this may have a bearing on why they are gathering in my skin.
Joanna

Chicago, IL

#542 Dec 7, 2010
Hi everyone, I had a biopsy over the summer after a year of trying to figure out what the red dots were all over my arms, torso, and legs and the doc said he was 90 percent sure that it was Pleva. just wondering, can anyone send me a pic of what their lesions look like? i've googled it but i seem to get the very sever cases. my e-mail is cubbygrll1123@yahoo.com
Thanks!!
Lisa

Jamaica, NY

#543 Dec 7, 2010
Lindadiane wrote:
<quoted text>
Hi Lisa: My cholesterol is also elevated. Another woman I know who had Pleva also had elevated cholesterol. I started taking Red Yeast Rice for the cholesterol and noticed my Plevas started popping like crazy. I am just wondering if there is something our systems are not able to propery process the cholesterol. Maybe that's why the Bromelain digestive enzymes they used in Italy worked. I also have VERY dry skin like barb. Does anyone else have that problem?
Hi Lindadiane, Yes I also have dry skin and high cholesterol. It's possible that there could be a connection with pleva. I have been taking a "policosanol" a dietary supplement I picked up at the local health food store. It's helps maintain normal healthy cholesterol levels. I have noticed ever since I have been taking the policosanol and vitamin D supplements my pleva has not returned.
Kelsey Bowling

Shepherdsville, KY

#544 Dec 9, 2010
Sue H wrote:
<quoted text>
The doctors don't have a clue Kelsey, my daughter got it after a bcg (tb) jab. I got it following shingles! We've both had it now off and on for almost fifteen years. I'm told it's rare in families, but no one has bothered to properly check out what we say.
Without a doubt chicken pox is involved somewhere, along with lack of immunity. My derm told me that yeast was also a factor, but they are no further forward now than in the early 1990's.
That's exactly what I'm saying, and it seems like doctors really don't care. I've had this since I was 12 I am now 18, and it's embarrassing. My derm told me he had no clue what to do and to "google" the disease. It's just funny that we have so much technology now adays and cant even use it for studies.
Lindadiane

San Fernando, CA

#545 Dec 12, 2010
Well, there appear to be two common threads.....immunizations and elevated cholesterol Hmmmm....

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