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I Have Lymphomatoid Papulosis

SPOTS

By: strawberriekc
Written on August 27th, 2008
Age: 22-25
1,667 people have read this story

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8 responses
  • bossrjc

    What is your treatment? I was just diagnosed.

    Oct 19, 2012
    2 likes
  • MooseEgg

    My dermatologist seems to be quite knowledgeable about LYP. When asked what causes it he says it is simply a disease, and so far it is an incurable disease.

    After 18 years of this devil I've recently had a breakthrough. A treatment of 10mg methotrexate once per week has cleared up my skin and I have been LYP free for the past 3 months, which is saying a lot since I had numerous serious attacks during 2009.

    I hope this helps someone else looking for a solution. Above all, don't become discouraged, there are helpful treatments available.

    Feb 20, 2010
    1 like
  • MooseEgg

    My dermatologist seems to be quite knowledgeable about LYP. When asked what causes it he says it is simply a disease, and so far it is an incurable disease.

    After 18 years of this devil I've recently had a breakthrough. A treatment of 10mg methotrexate once per week has cleared up my skin and I have been LYP free for the past 3 months, which is saying a lot since I had numerous serious attacks during 2009.

    I hope this helps someone else looking for a solution. Above all, don't become discouraged, there are helpful treatments available.

    Feb 20, 2010
    1 like
  • blanca46

    My 26 year old son was just diagnosed with LYP. I'm interested in knowing what treatment helped alleviate your sores.

    Jan 26, 2010
    1 like
  • linedance

    Hi there,



    I have lyphomatoid papulosis and have done for 30 years. I am very interested in the the comment KAfromVN, as my father used to use this chemical in his allotment.

    Jan 1, 2010
    1 like
  • 984sidedish

    dear strawberry, what is your treatment???? I could use some help...tried almost everything.....please respond...thanks...L.H. P.S.good luck feel healthy...

    Oct 21, 2009
    1 like
  • KAfromVN

    You are very fortunate to have been diagnosed with LP at such a young age. LP generally begins when a person is in his/her 20s. Mine started when I was about 21. I was misdiagnosed and mistreated for this condition for 25 years-- medications, surgeries and some radiation. It was not diagnosed when I had my first two biopsies because it was an unknown condition in the 60s when it first surfaced. I was diagnosed with the disease at Mayo Clinic in 1990. The condition got so bad I had to stop working. I have lived with it now for over 40 years. I have thought about finding others with the disease so we can help each other. I had a search going on Google and just happened onto this website tonight. I would like for all of us to compare our backgrounds and lifestyles to see if we can figure out the cause of the disease. My dermatologist feels that there is a possibility that my exposure to DDT as a child could be the cause. My father died from multiple myeloma which was supposedly caused by his exposure to DDT. It was outlawed after he was diagnosed with the cancer. I assume our condition is more common now since it can be diagnosed with a biopsy. I have probably had over 20 biopsies through the years. On a positive note, my condition has seemed to get better since I am older. The sores do always heal eventually, but I do have to have biopsies when they do not heal to make sure no cancer has set in. I did have one sore that became cancerous. It was removed at Mayo Clinic. If you have any questions, I will be happy to help. As you probably well know, most people don't know anything about the skin condition and always ask, "how do you spell it?" I just say it's rare and is not catching. Regards.

    Jun 29, 2009
    4 likes
    • lauriebender

      Please insist that you be referred to an oncologist and tell them that you want a complete blood work-up and a cat scan of your Chest, abdomen and pelvis. I don't want to scare you but I don't want you to wait. My husband was diagnosed with Non-Hodkkin's Lymphoma and LP is not the cause, it is a symptom. God Bless and well wishes

      Mar 31, 2012
      1 like