I Have Lymphomatoid Papulosis

i too was diagnosed with this disease on wednesday after about 10 years of agony. over this time i have noticed triggers that can cause it to flair up. 1 is cake soap, stress, automatic transmission oil and brake fluid has a reaction. recently with my complaint in full flair, i had to carry out storm water pipe repairs. our soil is a mix of sand and clay. with sores on the back of my hands i noticed that the clay in the soil had something of a benificial effect. allows the crust of the sores to somewhat dry out. and seriously people certainly on the sores that have a crust on them rub vacelene in to the crust. i dont know why but i think it blocks oxygen or maybe even allergents or something from affecting your bodies natural repair rsesponces from being over whelmed with i dont know multiple

chemicals perhaps or external bacteria or i dont know bed bugs or something.

also my skin sheds. and it sheds badly. with a petrolieum jell barrier this complaint has deminished. it for me does seem to work. but then i assume some of you have tried just about everything. my suggestion is to pick a limb try it and monitor the results.

i have tried moisturisers and all types of things quarterzone creams eluphrate lotions barrier creams

some had marginal effects but i never tried petrolieum jelly intill about a week ago.

i have been on akamin tabs for 1 1/2 months. i still get the bumps i am waiting for some to open and will monitor what happens. i hope you can do the same. note dont coat your whole body in vacelene your skin must breath

thanx peeps i will look forwards for a healthy responce

ohhhh yes hot showers are a no no as i am sure you know.

Thanks, MooseEgg, for the information. My doctor had no opinion whatsoever about whether the abrupt stopping of metho caused the horrendous breakout, but I really believe that it did. I am not taking the meds any more and want to see how this progresses over the next few months without any drugs or the PUVA light treatment (an approach not yet tried). And you are so right about Dematologists not knowing squat about the lymph system. Problem is, they don't want to admit it!

Hi Fotofan. I think I know how you feel. I suffered my worst ever breakout when I misinterpreted my doctors instructions. Instead of a metho dose once a week I thought he said once a month. The result was uglier than a double pepperoni and sausage pizza. It was all over my chest, back, arms and neck . It took 30 days to get rid of it. That was in November and here I am 5 months later with no problems, none.



First lesson learned: When things look rosy stay on the meds.



Second lesson learned: Dermatologists are skin experts but don't know squat about the lymph system.

Hello, all. I, too, suffer from both Lyp and mycosis fungoides. The conditions took six years to diagnose correctly, with several dermatologists not able to admit they didn't have a clue what they were looking at. Several biopsies later, the two "culprits" were finally identified. I went on 7.5 mg of methotrexate 18 months ago, which managed to suppress about 80% of the breakouts. I did not do all that well with the chemo; it caused dizziness and some nausea, even at that small dose. The real problem occurred when I stopped taking the metho about six weeks ago, and then the rash went out-of-control crazy, with the worst and most disfiguring breakout I have suffered to date. Did anyone have a similar experience with the cessation of methotrexate for this condition? Thanks.

Fotofan

Dear Linedance

I know it's hard to avoid being depressed but relief is available. LYP is rare and it is said that one million have it and, according to my dermatologist, it is not curable. When asked what causes it the answer is that it is a disease, either you have it or you don't.

I'm lucky. My dermatologist is far advanced in his field, so many do not yet understand how to treat LYP as strange as that may sound.

I've been on methotrexate (10mg per week) since early November, It is early March now and I have been blemish free the entire time. Prior to that I had three serious breakouts in a nine month period. I mean butt-ugly scary rashes. Huge!

Another member has claimed success with PUVA whatever that is.

Try some of these ideas on your dermatologist, he/she might not be aware of them.

Good luck.

MooseEgg

Hi,



I just found this website as well, and I am excited to learn from others on their experience with LYP. I am 26 and was just recently diagnosed. I was otherwise in great health and am still so confused with everything about this disease. It makes you wonder about everything. When I was 14 or 15 I was diagnosed with Juvenile rheumatoid arthritis and had many steroid injections but once I was 19 it pretty much went away and I have not had any problems with JMA since. Very weird I know, that is why I was intrigued by you having that as well. I am very interested on what happened while you were pregnant? My husband and I were just going to start trying until this happened, so we are wanting to see if it affected your baby or you at all while being pregnant? Mine started with one bump on my arm and over about the last 3 months has spread to my chest,back,stomach, legs. What treatments have you tried? What is HRT? Hope to hear from you soon!

Corina