I Have Lymphomatoid Papulosis

A Lymphomatoid Papulosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Lymphomatoid Papulosis. You're not alone. 177 People

    I was diagnosed with LyP this week.

    One day 10 months ago I woke up with spots everywhere. Ever since that day I've consistently had them and not known what it is. I would estimate I've had around 200 spots of varying degree in the last 10 months. I am being referred to a hospital soon so I can know my treatment...
    shezac shezac
    31-35, F
    1 Response Mar 5, 2016

    Recently Diagnosed With Lyp

    After seeing a dermatologist twice, I was diagnosed with LyP. Luckily, she's sending me to a specialist in Chicago who can better treat the condition. After seeing the doctor on Thursday, I hope to have a better idea of what I'm dealing with! I always wanted to be considered...
    Bugsydog Bugsydog
    1 Response Feb 19, 2012

    Joing Group With More People With LP- Together We Are Better!

    Dear all, I have a family member with LP. As you all know this is said to be 1 in a million condition. We believe that getting together will help everyone to deal with the disease and also to pressure the health investigation community to go foward with studies to find the cure...
    Fredericamv Fredericamv
    Jul 25, 2013

    Lyp For Last 5 Years

    I have been detected with lymphomatoid papulosis at the age of 35 yrs.first up all noticed deep red papules benith my right arm. Also near my buttock. It was itching all the time and especially during hot and humidity days. Now after my skin biopsy it has been confirmed with my...
    shiva6666 shiva6666
    41-45, M
    2 Responses Jul 27, 2013

    Recent Diagnosis

     My 26 year old son has just been diagnosed with LYP. So far he has only had one lesion at a time. Did anyone have this experience at first? Can the outbreaks be controlled more effectively if the disease is diagnosed early? Has anyone had the lesions go away completely?
    blanca46 blanca46
    61-65, F
    12 Responses Jan 26, 2010

    I'm a 70 yr old married male.

    My very first 'lesion' arrived in 2011, on my neck. A biopsy claims I have LyP. In the last three years I believe I've had about a dozen LyP lesions. The most recent 'lesions' have appeared on my anus, scrotum, and upper eye lid's eyelash area. These 3 have driven me nuts...
    remski remski
    70+, M
    1 Response Oct 28, 2014

    Hi All, Anyone else find

    that switching to a plant based diet "cured" the LyP rash? Here's my story. In January 2014 I was getting dressed one morning and noticed what looked like bug bites on my arm. I didn't do anything at first. A few weeks later the "bites" looked a lot worse. They went from...
    jlow7 jlow7
    41-45, F
    4 Responses Apr 27, 2014

    I am a 53 year old female,

    diagnosed just over 1 year ago. I was put on methotrexate at the beginning, but due to multiple side effects was taken off after 2 months. My insurance company paid for a home phototherapy unit which helps for the most part with the leisons. However I am now experiencing...
    sleight4 sleight4
    1 Response Aug 27, 2014

    Lp After 100 Doctors I Went To Chicago To The Best One :)

    Hello,I am Portuguese with 26 year old. For 3 years that I felt that something was wrong in my skin.So after 6 mts in several doctors, I went to Chicago to the best doctor. He said so "many good things".I would love to speak with people with me age :) This Doctor told me to...
    blcmateus blcmateus
    22-25, F
    2 Responses Mar 8, 2011

    Concerned Mom

    My Daughter is 9 years old on April 24, 2009 she was diognosed with Vitiligo. We have been doing Xtrac Laser for over a year now, along with Protopic cream. On May of this year a lession formed on her kneck and was biopsied. Results and second confirmation on Friday of this week...
    Momconcerned Momconcerned
    31-35, F
    5 Responses Jun 27, 2010

    Hey there.... I just want to share my

    experience. I was diagnosed in Oct-08' I was 27 at the time) I had a few spots (and after a few biopsies and a wonderful doctor- it was LYP) I opted for Methotrexate and light therapy right away... was on it for ten months... the spots went away however as soon as I came off the...
    MaddieNYC MaddieNYC
    36-40, F
    4 Responses Oct 23, 2015

    A Private Facebook Group

    Hello Everyone, One of my friends shown me a private facebook group of us. If you are interested in joining. Please message me and I'll let you know how to join.
    coldfire83 coldfire83
    31-35, M
    8 Responses Aug 18, 2013

    I have been diagnosed 1 week ago.

    Now I have 4 small lesions, last year I had 10 lesions that healed espontaniously. I'm a 37 years old doctor and this condition leaves me very concerned about my future. I´m very glad to find you here!!!
    lctpereira lctpereira
    36-40, M
    2 Responses Feb 26, 2015

    My 6 year old son was diagnosed with LyP

    yesterday. About 3 weeks ago he started getting little read spots on parts of his body. We initially thought they were Chicken Pox and brought him into the Pediatrician when some of the spots began to get pretty big and red. He was initially diagnosed as has having MRSA so a...
    nebzach nebzach
    36-40, M
    1 Response Jan 23, 2015

    Hi Everyone, It is nice to see everyone's posts

    about their own experience with Lyp and I can relate to mostly everyone's symptoms in here. My experience with Lyp started when I came back from vacation in November 2013. It started with two bumps that resembles a spider bite. Those two bumps started to become bigger and...
    ejayb109 ejayb109
    31-35, M
    2 Responses Aug 8, 2015

    I was diagnosed in March 2015.

    I underwent multiple doctor and dermatologist visits, multiple biopsies, blood work, urine samples etc. Unfortunately, the diagnosis took months, and was given to me with very little information on the disease itself or how to go about treatment. Has anyone mastered how to treat...
    ForTheJourney ForTheJourney
    26-30, F
    1 Response Oct 21, 2015

    What Looked Like Bites Turned Into Lymphomatoid Papulosis

    Last year between the months of October and November I would wake up with red bumps on my body. After about a month I grew tired of trying to diagnosis myself with bed bugs or fleas so I had a biopsy done. The result was shocking at the age of 30 with the diagnosis of Lymphoma...
    Bowditch9 Bowditch9
    3 Responses Oct 29, 2013

    It's not actually me,

    it's my son. He is now 14 -1/2. Was diagnosed at the age of 10 after just one outbreak. I might add he has never had another outbreak. He is fortunate that way. HOWEVER, he has had ongoing muscle twitching when awake and asleep. It's almost constant. We are currently on a...
    chrisieplatt1967 chrisieplatt1967
    46-50, F
    2 Responses Feb 11, 2014

    I was diagnosed with this a couple weeks ago.

    I have had 3 lesions in a year. I am 22 years old and working on my masters degree in communication studies. Apparently LyP is rare and can result in certain types of lymphoma. There is a specialist I am going to see later in the month. I remember thinking I had bed bugs or...
    srf0013 srf0013
    22-25, F
    2 Responses Nov 5, 2014

    Time To Come Together On This

    Hello everyone. My name is Candace and I have had LYP for 3 years now. I wasn't diagnosed until 1 year ago, and it was because it became non-hodgkin's lymphoma. I went through radiation and chemo and was guaranteed everything would go away. Sure enough it did, and my final PET...
    canncann28 canncann28
    22-25, F
    4 Responses May 6, 2012

      I started getting the LyP symptons in

    early 2006. I used to get a single red spot at a time on my legs which turned into dark black lesions once the red spot had developed. I had these basically one at a time until I was diagnosed with LyP in late 2006. The dermatologist said there was nothing really that I could...
    Harrythetorch Harrythetorch
    51-55, M
    3 Responses Jan 13, 2016

    Hi I am a 34 year old female,

    I was diagnosed in 2009 after seeing several doctors, I had outbreaks on my legs and arms. I went to the university of south Florida as I knew what I was experiencing was odd and rare. After several biopsies I was diagnosed but my dr only wanted to treat the outbreaks once they...
    Rms010400 Rms010400
    36-40, F
    2 Responses Nov 15, 2015

    26 And Recently Diagnosed With Lymphmatoid Papulosis

    In early March of 2011 I started out with one small red bump on my hip. I didn't think much of it because it went away after about a week. About a week later I had two more come up on my knee, a week later, hips, thighs.....I think you get the point. I was covered. I went to my...
    jessicaogle1106 jessicaogle1106
    6 Responses Dec 6, 2011

    Former Hodgkins Patient With LYP

    In 1988, I was diagnosed with stage 4B Hodgkins Lymphoma with bone marrow involvement. After 18 months and 24 chemotherapy treatments, I am disease free for 23 years now. In 2003, I developed Lymphomatoid Papulosis, (LYP) and I have never entered any treatment protocol for...
    hodgkinsman hodgkinsman
    1 Response Jun 7, 2013

    I've Had LYP For More Than 35 Years.

    I had what appeared to be spider bites at first. When I was finally diagnosed I had hundreds of papules at a time. They always took what I thought was about three to four weeks to heal. The papules looked like they were capable of breaking, but never seemed to break...
    fordtempo fordtempo
    66-70, M
    2 Responses Oct 16, 2013

    Hi hope some one can help out of the blue 6

    weeks ago I developed a rash - spots still have them. Been on 3 lots of antibiotics now fluxocillin my GP thinks it foliculitis (which it's on clear skin with no hairs etc however I have to go back in two weeks if not gone GP going to refer me to a dermatologist for skin biopsy...
    kevmos27 kevmos27
    41-45, M
    1 Response May 9, 2014

    I Have Lymphomatoid Papulosis

    i have been a sufferer of this horrible condition, since my twenties, I am now 68yrs, female. I have a wonderful Dermatologist, his name is Professor Sean Whittacker, and is based in Guys Hospital London. this complaint comes and goes, I used to get ulcers on my skin, very...
    toby0208 toby0208
    2 Responses May 19, 2013

    I just found out I too have Lymphomatoid

    Papulosis any updates that you could give me, since I am new, I do not know a lot about this condition.
    dennyland dennyland
    61-65, F
    Jun 1, 2015

    Just Diagnosed With Lymphomatoid Papulosis :(

    Hello my name is Corina, I am 26 and was recently diagnosed with Lymphomatoid Papulosis. It has been a horrible couple of months of doctors trying to figure out what it was. What we thought was a bug bite I received while in St. Marteen turned out to be this disease. It was...
    corinap corinap
    26-30, F
    7 Responses Feb 21, 2010

    I Have Lymphomatoid Papulosis

     Dear All,    I have just found this website.  I was diagnosed with this condition around 25 years ago.  I am now 55 and have had the condition for 30 years.    I would be very interested to find out what caused this condition in order to...
    linedance linedance
    51-55, F
    6 Responses Jan 1, 2010

    Lyp Diagnosis

    I am a 48 y.o. female who was diagnosed with LyP about 18 months ago.  I have had approx 10-12 lesions (before this current outbreak of three spots) with several "pips" that didnt break the skin surface.  My treatment is to use clobetasol topically and take a course of...
    lmmelb lmmelb
    3 Responses Aug 18, 2010

    Living With Lyp

    Hi everyone... I joined this group to try to help and support others with this rare skin disorder. I was diagnosed about ten years ago and, at the time, was covered from head to toe with lesions (including my palms, soles of my feet, eyelids, inside my mouth, everywhere)... now...
    littletreeamanda littletreeamanda
    41-45, F
    9 Responses Sep 19, 2009

    Don;t Allow Sickness To Take Over Your Life, Think Positive

    I am so happy I have found a website that supports this Disease, and I am able to see that I am not alone. I have been dignosed with the disease Lympoma Papulosis only about 1 year ago, I am a female in my 30's and i was so devestated when i  finally found out that I...
    lifeisgreat8 lifeisgreat8
    31-35, F
    8 Responses Jun 20, 2010

    My LyP

    Howdy everyone, I have had my lymphomatoid papulosis diagnosis for around eight years now, and currently it is better than I have seen it in the past. I'm taking a once weekly dose of 7.5mg methotrexate, and it keeps the condition mostly in check. I still notice papules and crops...
    jacobbartz jacobbartz
    22-25, M
    1 Response Oct 2, 2013

    Just Diagnosed With Lymphomatoif Papulosis

    Hi, this is Banu from Istanbul, Turkey. I’m one in a million in my country… This year in the mid of May, I noticed a small red dot on my thigh. First I thought it was an acne, so I went to a derm and she prescribed an antibiotic. Later in June I recognised some more red dots...
    BanuNazli BanuNazli
    31-35, F
    Aug 29, 2013

    Hi, I was diagnosed 4 years ago with

    lymphomatoid papulosis and not only do I get lesions that seem to be immediately apparant but I get ones that are systic underneath the skin surface and then after about 2 months they eventually make there way through skin surface and after another 5 weeks they usually end up...
    BoneSists BoneSists
    51-55, M
    1 Response Sep 25, 2014

    Lyp - I Need Some Answers

    I'm looking for a little advice/answers... My dermatologist got the results back from my biopsy and said I had a 'scattering' of lymphomatoid papylosis cells but the biopsy wasn't definitive. What does that mean?? Is it rare to even have a 'scattering' of those cell or is that...
    cdawn91 cdawn91
    22-25, F
    5 Responses May 27, 2010

    Hello I was diagnosed Feb 2013 at the age of 38.

    I have found if I put a product with sulfur on my lesions when I first spot them they resolve quicker by not reaching the stage of crusting over. I still get a mark. Please try it and let me know your results.
    dayam770 dayam770
    41-45, F
    Apr 11, 2015

    Skin Condition Lymphomatoid Papulosis

    I was diagnosed with this skin disease in 1990. I had been misdiagnosed and mistreated by several dermotologists for this skin condition for a twenty-five year period till it was finally diagnosed at Mayo Clinic in 1990. It is a rare skin disease, but at least it has finally been...
    KAfromVN KAfromVN
    5 Responses Jun 30, 2009


    I have Lymphomatoid Papulosis. I developed these spots about 1 year ago. It was tragic. I thought i had cancer....lymphoma at that. i am only 25 years old i thought to myself...i am way too young to deal with this! well now i am on treatment and my skin is clear...which is a...
    strawberriekc strawberriekc
    8 Responses Aug 27, 2008

    I was recently diagnosed with LyP.

    After one year, 7 doctors and countless biopsies, I am now on doxycycline for 60 days. These are some of the previous guesses: folliculitis, bed bugs, Grover's Disease, allergy to Balsam of Peru, contact dermatitis, medicine allergy, eczema, persistent insect bite reaction...
    LyPnew501 LyPnew501
    70+, M
    Sep 15, 2015

    I'm 23 years old and was diagnosed

    approximately four years ago. I get blood drawn every six months to make sure that everything is normal. So far, so good. I'm rooting for all of us! :-)
    jjg846 jjg846
    18-21, F
    May 12, 2014

    Hello fellow sufferers.

    I am currently experiencing a bad outbreak (one lesion, but the worst I've ever had) and am wondering whether it could have been triggered by my treatment for a verruca (plantar wart) which involved silver nitrate. It may be a coincidence, but I remember reading on another...
    JDA62 JDA62
    Mar 10, 2015

    Finally I Know Whats Been Hurting Me For So Long...... Lymphomatoid Papulosis.

    for at least a decade now i have had this complaint, over time it slowly got worse and increasingly drove me nuts. i have always been self concious of myself uncomfortable around people and then to have these sores rashes bumps itches shedding skin and all the embarasment...
    blink8blink8 blink8blink8
    2 Responses Oct 5, 2011

    Discussion About Possible Causes That Accelerates The Eruption

    Now thinking back. I must have had my first LYP at the age of 15 on my chest, it went away within a monthAt the age of 20, a small bump appeared on my right forearm soon followed by more scattered around it... then the disorder spread over my body (mainly my legs, arms, hands and...
    NeverFrown NeverFrown
    3 Responses Feb 22, 2012

    My daughter was diagnosed with LyP

    since she was 3, she is 17 years old now and she's had a pretty easy time with it. Although recently she has had pretty swollen lymph nodes, and the little "red bumps" on her skin. She am going to the doctors soon to make sure everything is alright!
    Leopard1997 Leopard1997
    51-55, F
    1 Response Dec 12, 2014

    Does Anyone Feel Colder Than Usual????

    Hi all :) I have LYP and I'm wondering if anyone feels colder than normal. I am a thin girl and feel COLD always and people tell me to get some fat but I think it may have something to do with this condition and wanting to know if anyone else out there has this symptom??? in...
    lifeisgreat8 lifeisgreat8
    31-35, F
    3 Responses Oct 6, 2013

    I was diagnosed with LyP in April 2015,

    and have been on doxycycline followed by minocycline since then (it's June now)...to be continued indefinitely. Has anyone else been prescribed antibiotics for that long? Anyone else bothered by what seems like an inappropriate treatment? I mean...it seems to work, but I can't...
    cpagan cpagan
    31-35, F
    Jun 25, 2015
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