← Return to Lymphomatoid Papulosis
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Replies to "Hi all, I have been recently diagnosed with LyP. Back on March 14, 2018, I broke..."
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
What us LyP? I've never heard of it. I know 6 weeks can seem like forever, especially if you're young, have children, and a job.
What is the stuff coming out of the lesions that looks a brown color? Have they told you?
I started a new group under Skin Problems called Morgellons and Other Parasites, if you know of anyone suffering from parasite problems. What people don't know, is that you usually cannot see them unless you have either a violent/blue light or just a phone camera that has a high MP count (mine is 12 MP) but the important thing is ALWAYS USE THE FLASH. Otherwise, you can't see a thing.
Good luck with yours. Don't you just hate it when you have something and can't figure it out?
God bless.
@melissaerobbins Melissa, I hope your doctors are able to solve this for you soon. I know how frustrating it is when your doctors cannot figure out what is wrong with you or what the best way to deal with it is.
JK