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Recent Diagnosis of Lymphomatoid Papulosis

For the past 6 years, I have had red itchy bumps on the stomach and back- they go away, come back.  Sometimes will actually bleed and scar.  Over the past 6 years, went to top Dermatologist in RI, she advised me that I was allergic to Bounce fabric softeners and to stop using them.  This didn't work.  My PCP just gave me a cream to put on it and THAT didn't work.  I finally went to an allergist, who did all allergy tests on me- Found I was allergic to Nickel, but that didn't explain the problem.

The bumps have ALWAYS been on my trunk.  About 5 weeks ago, 4 bumps showed up on my left wrist and I went to a PA at a dermatology office, who thought it was nothing- but I insisted on a biopsy, and come to find out I have Lymphomatoid Papulosis.  CBC was done and CXR- all results were fine.  What are they looking for on CXR?

Can some of you out there that have this disease share their experiences with me??  Please email me at kduchesneau@cox.net

Thanks

 

 

 

mroreo mroreo 46-50 2 Responses Jun 21, 2009

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experience, not sure..but i was diagn. 4 yrs ago...every 6 months i have a BLOOD TEST CALLED CD4 & CD8....IF OUR COUNT IS HIGH IT CAN PREDICT AN OUT BREAK..( I GET 4-8 AT THE SAME TIME)...THE ONLY PLACE I HAVN'T GOTTEN THEM IS ON MY FACE....Once a yr. I get a x-ray called a CAT-PET... they are looking for tumors( the begining of ) so far iv'e been clean...hope this was a little helpfull...

I happened onto this website tonight because I had an LP search going on Google. I haven't read the articles lately but always save them when they are sent to me via the Internet. I just responded to another person with this disease on this website. Perhaps you could read my comments in that posting. I have had the condition since age 21. I have lived with it for over 40 years. I have wanted to find people with this condition for years so we could perhaps come up with a common cause of the disease. It has baffled me for years. One learns to live with it. My condition was so bad in 1990 that I ended up at Mayo Clinic and was diagnosed with the disease there. My mom talked me into going there when I finally broke down in tears from the discomfort. I couldn't go to work. I had a major breakout on my legs. So I have a lot of experience with the disease. I joined the group on this website. Please join. I will also send you an e mail in case you are not signed up to get notices when someone replies to your posts. I still need to create my story. I just replied to your post and another this evening. My dermatologist and I think that my exposure to DDT as a child could be the cause of mine. It is outlawed now, of course, so it may be something else entirely. I would just like to compare our backgrounds and lifestyles to see if we can come up with something. So lets get together in the LP Group. We can also tell our dermatologists to recommend this site for other patients with the disease. It is still rare, however. My dermatologist only has a couple other patients. Regards.