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Lymphomatoid Papulosis

Skin Health | Last Active: Sep 26, 2022 | Replies (68)

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@melissaerobbins

Hi all, I have been recently diagnosed with LyP. Back on March 14, 2018, I broke out with about 10 lesions all along my stomach, inner arms, underarms, and back. I had a few last year in 2017, and they went away with desonide steroid cream (They had been diagnosed as eczema). However, after about a week, one of the lesions became really inflamed and developed a necrosis center that was crusting, bleeding, and oozing. As it got larger it was painful and sore. I originally went to Duke Urgent Care twice and it was misdiagnosed as a bacterial infection and I was put on bactrim and doxycyline. Then I saw UNC Urgent Care and it was diagnosed as a brown recluse spider bite. I was prescribed predisone and dapsone of which I didn't end up taking. I then saw my new PCP and UNC dermatology. That is when they did one biopsy and a bacterial swab. They admitted me to the hospital for IV antibiotics of vancomycin. However, the swab came back negative for a bacterial infection. They then put me on another antibiotic cephlosporin. I had urine tests and blood work done. Currently, no signs of cancer in my blood or protein, etc in my urine. Then I was released from the hospital after four days. All along the lymph node under my left arm has been swollen and still is, and I feel like I have the flu. Very fatigued, sweating episodes, and fever episodes. I didn't originally have an appetite after taking all of those antibiotics, but now I'm drinking Kambucha tea, eating yogurt, and taking a daily probiotic which now I have an appetite. So after being released from the hospital, I was still feeling awful and no improvement for my lesions. They gave me a strong topical steroid clobetasol, but it only seemed to be helping minimally. So the following week I scheduled an appointment with UNC dermatology. I was able to see a dermatologist who specializes in lymphoma. She said that my lesions were characteristic of LyP and prescribed predisone for me. I have been on it for 5 days now, and together with the topical steroid, I have seen dramatic improvement with my lesions. The smaller ones seem to be fading away and even the larger necrosis one is breaking up and healing a little better. The inflammation seems to be going down. I can't tell whether or not my lymph node is decreasing in size. Maybe a little bit. However, I still feel very fatigued, get hot very easily and have sweating episodes, and a difficult time sleeping. I also have had a dry tickle cough for five weeks now. In addition to visiting UNC dermatology, I scheduled a PET scan and thankfully it came back that all of my organs are fine, but some of my cutaneous lymph nodes were lighting up with a higher metabolic activity. I am supposed to see the lymph node specialist this week for a possible biopsy, the dermatologist for a follow-up and possible second biopsy, and the oncologist.

Any suggestions regarding trying to reduce the occurrence of these lesion outbreaks would be super helpful or any insight into the relationship with enlarged lymph nodes and the LyP lesions would be great. (I originally got the lesions after taking a warm shower and toweling off - happened the same way last year and this year - I was also really stressed at both times). I'm just ready to feel like my normal 100% self again. I have been sick for six weeks now and it has been a rough process. I'm finally able to be back at work today and I'm so thankful.

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Replies to "Hi all, I have been recently diagnosed with LyP. Back on March 14, 2018, I broke..."

@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

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.