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Fri, Oct 12 8:50am · Lymphomatoid Papulosis in Skin Health

Hi Samantha- I'm so sorry for all you are going through at such a young age. Have you had your surgery yet? Have they given you a diagnosis? I was misdiagnosed for 9 years before demanding a biopsy and got the LyP diagnosis. Right now I have about 10 small lesions on me. If they get itchy I have Clobetasol foam (like it better than the cream- it's greasy and more like ointment) to put on them. When I did not know what they were- I would continue to scratch them- which made more come out. So, I think I am doing well. You have quite a bit going on; where I don't even know what to give you for advice. I hope your diagnosis was a good one, and prognosis as well. I believe more people have LyP -and that it is not so rare (they say 1-2 people in a million). I believe people just get misdiagnosed and are dismissed by their doctors. When my PA in my dermatologist office biopsied me and got the results- she shared with me that she had the same looking papules on her and the DERM dismissed her with dermatitis. She biopsied herself and learned that SHE has LyP. I saw her yesterday because I have also had Basal Cell, Squamous Cell & Melanoma in-situ (Skin Cancer) and have a full body exam twice/yr. I also have bloodwork and Chest Xray annually. My PA told me that her 1st cousin (female) just got diagnosed with LyP. There is a private group of us on Facebook that have LyP with 206 members. I think you should request to join- many of the members have a lot more going on than me and can hopefully give you some good information. I hope your parents are being a lot more supportive. You need someone to advocate for you. What state are you in? Check out http://www.facebook.com/groups/lymphomatoidpapulosis. Good luck and keep us posted!! Kathy in Rhode Island

Thu, Aug 30 7:35pm · Lymphomatoid Papulosis in Skin Health

Please see my post from April 25, 2018

Thu, Aug 30 7:14pm · Lymphomatoid Papulosis in Skin Health

He is still listed as practicing at Roger Williams Medical Center (www.rwmc.org) in Providence, RI. The telephone number they have listed for him is 401-456-2100.

Sun, Apr 29 4:43am · Long-term depression in Depression & Anxiety

Hi Seeker70- I can really relate to how you are feeling. I am a nurse and off to work now at a psychiatric hospital. (I guess seeing people suffering worse than I am gives me a dose of my reality) Like you, looking back to teenage years, I realize I wasn't happy. And all through these past 30+ years- on and off. You did not mention if you are taking any medications or going to talk therapy?? I will write again later. Take care, K

Wed, Apr 25 8:40pm · Lymphomatoid Papulosis in Skin Health

Melissa- So sorry for what you are going through. I've had LyP for 17 years now- 9 years diagnosed incorrectly. But mine are much smaller than yours. I use Clobetasol foam (I like it much better than the cream/greasy ointment). It does help a bit. I have definitely been paying attention to my triggers over the past few years- STRESS is a biggie! Hot showers, Jacuzzi tubs- (the spray from the jets on your skin may trigger an outbreak) clothing that is fitted or too tight. I find that I must wear cotton shirts (no silk, polyester, acrylic, etc) or I will have an outbreak. I have given up wearing sweaters unless 100% cotton, or a camisole underneath. I met with one of the top patho-dermatologists in the country (Marshall Kadin MD, Providence, RI) and at that time I had no active lesions. I asked him about whether I needed to see an Oncologist and he said not at this point. There is a 20% greater chance that we will develop Lymphoma than a person without LyP. I have bloodwork done once a year for my LDH level and a chest x-ray. I think you should see an Oncologist and/or Hematologist just to be on the safe side. I'm concerned about your symptoms. There is a group on Facebook for us LyP cheetahs. (We only have 154 members- as they say 1-2 people in a million have LyP) On Facebook, search for Lymphomatoid Papulosis. The members all have LyP and we are there for each other for support and guidance. I hope everything turns out well for you!! Hugs and Prayers! Kathy

Dec 27, 2017 · Skin Cancer/Squamous Carcinoma in Skin Health

Hi, Just saw your post about squamous cell and what your treatment was. You didn’t say where on the body it was. I have had basal cell, squamous cell on my face, and melanoma in situ on my upper thigh. For my face, I had MOHS surgery, where they remove a layer of skin and examine it under the microscope and continue to remove small layers until they no longer see cancer. If you ever have skin cancer on your face- that is definitely the way to go. Very minimal scarring. Of course, the doctor was wonderful. On my upper thigh- my dermatologist noticed a very tiny freckle, which I didn’t even notice was there. She biopsied it and called me several days later to tell me it was melanoma in-situ, and we caught it in time. Advised me to get an appointment with a surgeon(s), she recommended a few. She told me whoever could take me the soonest, to make the appointment with them. I had surgery and now have a 3 inch scar on my thigh; which is fading. That was probably 2012. I have always been a sun lover; living near the ocean and going to the beach since I was a kid with no sunscreen. So- many years of sun damage. My dermatologist tells me to use #70. I have heard that anything over #30 doesn’t protect you any better. But, I do use #50 on my face and #20 on my body. But, we only have summer here in the Northeast for 3 months or less. Good luck!

Aug 24, 2017 · Systemic Uncontrollable Itching in Skin Health

Hi – My name is Kathy and I am 55 y.o. I had the same symptoms as you do going back about 18 years now. I was misdiagnosed by my PCP, 2 dermatologists and an allergist. They said I was allergic to Bounce fabric softeners, had dermatitis, Folliculitis. I thought maybe I was allergic to the cold weather; as I had many outbreaks during winter. I finally demanded a biopsy when 4 bumps appeared on my left wrist. My PA at my dermatologists’ office did the biopsy. The dermopathologist was looking for Epstein-Barr, Mononucleosis. However, they determined I had a very rare skin disease called Lymphomatoid Papulosis. They say 2-3 people in 1 million have it. I believe the rate is much higher- because people get misdiagnosed. In fact- the PA in my Derm’s office at the time said she had something similar on her and after my diagnosis came back, she biopsied herself and has the same thing!

There is not a lot of information on the web about Lymphomatoid Papulosis. I know that I have a 20% greater chance of developing Lymphoma than the average person. There is an expert here in Providence RI named Marshall Kadin MD at Roger Williams Medical Center. He has published work on Lymphomatoid Papulosis. It all has to do with the T cells and B cells and immune system. I did see him- although I was asymptomatic at the time. Google him and you should find some answers. I happen to live in Warwick, RI, so that was very convenient.

I will tell you what I have learned my triggers are (took me a lot of years to work on figuring that out!) #1. I only wear cotton now- if I wear polyester shirts, acrylic, wool, etc….I am asking for an outbreak. I usually have flare ups all over my stomach and back. Occasionally my legs, rarely my arms and never (cross fingers) my face. #2. STRESS is a HUGE factor. The more you scratch, the more “bumps” you’ll get. You may find that you scratch so hard, they will bleed a bit and scab over and leave little tiny scars. (not noticeable to anyone but you) #3. Hot showers. #4. Do NOT go in a Jacuzzi or hot tub- the spray from the jets brings them right out. In fact you can feel them coming out. #5. Massage or skin to skin friction- This may have been a one time only thing- I went for a professional massage and the masseuse used an oil on me. As she is massaging my back, I can literally feel the bumps popping out on my stomach.

Depending on the severity of the disease determines the treatment. After I realized what my triggers are- I only have a spot here or there now. But, my PA has me use a very strong topical steroid called Clabetasol (sp?) It comes in an ointment form (very greasy) or a foam ( I love). Use it very sparingly.
I have the same bottle that I had a year ago. I also have blood work done and a chest x-ray once a year looking for any lymph node involvement.

Any other questions you have- please feel free to reply! Good luck to you! There is also an email address on yahoo where LyP patients email back and forth. I will get you the name – got to get ready for work. Kathy