Hi Sadea and Jshdma,

I don't have ELP. I do have autoimmune disease, which seems to cause ELP in some patients.
I am NOT a medical professional, so I have hesitated to write this post. It's been on my mind, though, because you folks are really suffering and no one has relief for you.

Ask your doctors about applying "gentian violet" to your mouth sores. I don't know if it will help, but this is why I am suggesting it:

There might be a scientific reason that it would work. My pediatrician recommended gentian violet for infants (!) with thrush, which is a yeast infection in the mouth. Lichen is a yeast-alga combination, so maybe the gentian violet would work on the yeast part of the lichen and give you some relief.

Gentian violet is a really, really old fashioned remedy-- one that folks used before fancy medications and antibiotics for all kinds of icky sores and cuts and stuff. My pediatrician probably did his medical training in the 1940s. So, depending on their age, your doctors may never even have heard of it as a possible treatment of the mouth sores you have described.

My pediatrician was still in practice when my sisters and I had children! (God bless him!) At his recommendation, we all used gentian violet for our babies when they got thrush, which was pretty common among breast-fed babies, of that era at least. When my daughter was born, he had taken on a new, young associate who prescribed an oral med for my baby's thrush. I used 2 courses of it, and it didn't stop the thrush! Then my pediatrician (the older, boss- doc) told me to use gentian violet. One application-- yes, one!-- cured her thrush.

I haven't looked for it for years, but gentian violet is a purple liquid that used to come in a small brown bottle. We put a very little bit on a Q-tip, and spread it around the inside of the baby's cheeks. It permanently stains everything it touches, so be careful if the doctor says you can use it. The permanent stains might be part of the reason that mothers stopped using it!

I don't know if it stings or if it tastes bad. The babies couldn't tell us, but all of them did cry.

Let me say again that I am NOT a medical professional. Since we used it in the mouths of newborns, it seems like it must be pretty safe. But please check with a doctor before trying it.

I really hope you can get some relief! Let us know if it works. Good luck and blessings to you!