Hello ... This is my first post. I am here because I have some questions, concerns and fears ...
Long story short, I self Dx'd Demodex just over a month ago. My Dermatologist didn't disagree, but found only 1 in the (10 am) scrape. Still, she Rx'd Avar (a Sulfa antibiotic.)
In retrospect I know I've had a minor infestation for quite a long time. It surely got worse when I started the anti-psychotic drug Lamictal a few years ago, as my sebum output skyrocketed. I've tried coming off that, but I get way too depressed (suicidal). Decreasing dosage did not decrease the sebum. Then a year ago I injured my neck and had 2 or 3 courses of oral steroids. That corresponds well with when my newest symptoms slowly started.
Ever since I was 16 I've picked at my face. I remember my first Demodex nest -- on my chin -- and learning that there was a type of zit that just would not pop, and to never mess with those. I have OCD tendencies, and I came to use picking at my face (cleaning out the pores) as a method of self-soothing. Every night, and sometimes during the day when I was particularly stressed.
So I was able to see an increase in the gunk that came out of the pores of my nose. And then it became thick and chunky and really gross.
Another thing about me. I am very nearsighted. So if I look at myself up close in a mirror (w/o my glasses), I see far more than the standard "naked eye" can see. So I saw these white things coming out of my pores. The more that came out, the more I knew I had to keep at it until the pores were clear. It had become a true obsession and it could take me an hour each night before I felt clean enough to go to bed. I could also tell which pores harbored the white things.
Now I know that Demodex can be nearly everywhere. That is why I've felt crawling on my legs. They are why I have bumps in my mouth and in my crotch (which is always itchy). It is why I've got bumps on my sides and torso and thighs. And all the new bumps on my temples.
When I started treating, I did suspect I had mites on my chest, and I treated there. The skin wasn't happy, but it was OK. (Note that I can't pick at that skin; it doesn't cooperate). After a few days of not seeing any improvement in the amount of gunk coming out of my pores, I pulled out the "big gun" and treated with a mixture of Nu Stock (50% sulfer) and coconut oil on my face and torso. My face handled it, sort of. My torso got red, hot, inflamed and very itchy. Weeks later it hasn't calmed down, but that is because 1) the itchyness was from the Demodex coming out and 2) I've continued to wash it with tea-tree products.
So after 3 1/2 weeks of treatment nothing seemed to be getting better, but my skin was getting worse and worse. I'd bought a USB microscope and the landscape of my face is nearly unrecognizable now compared to when I started. My skin breaks and bleeds extremely easily. I try not to pick at it, but I know they are in there. My fingernails are permanently bent now from the past year of pore extraction, and I found I could use a simple metal tool to just pop the (egg sacs? larvae?) out of the pores.
But using the metal tool taught me how to find the small Demodex nests -- really I don't know what they are, but they are the same as the bigger bumps, only smaller and barely under the surface. I can see them clearly through the microscope but my fingers can't usually feel them. The tool, however, knows. Easily. They make a different sound as it passes over. What I scrape out looks like pre-Demodex, often similar to the thick white things that come out of my pores.
1. How can I learn to live with the knowledge that I have Demodex nests and all I'm doing is putting a topical on them in case they hatch while the topical is active? I'm ruining my face and skin (what the Demodex has left of it, anyway) and spending many hours a day examining and trying not to extract and extracting and treating and showering (and doing laundry).
2. What moisturizer can I use? I've been avoiding them for 4 weeks and now my cheeks and neck look burnt flat. The advice out there is so contradictory. Can I use shea butter, or is that bad? What about moisturizers with alcohol in them (they all seem to). Is there a good mostly coconut-oil based moisturizer? (And why is this information so hard to find?)
3. I have to sleep with a CPAP machine because I have obstructive sleep apnea. This seems to mean that when I've treated most of my face, especially the area around my mouth and nose, then the stupid mites go into my nose and are blown into my lungs, which makes me cough. But I'm sure that if I leave untreated space near my nose and mouth, I'll wake up with nests there. I just don't know what to do!
4. What do you do if you can't shower first thing in the morning? I'm traveling to visit family in a few days and I stay with a different relative each night, sharing bathrooms with my hosts. I don't usually shower 1st thing at home because the mites are going to sleep and I may as well leave the night's protection on for a bit longer. I actually like showering around noon and then having naked skin for a few hours 'til they start to wake up around 3 pm. But I smell like sulfer / tea tree oil / coconut oil during that time. Not OK while in a car with others for a few hours.
5. The people who know I have mites are my dermatologist, my mental health therapist and my husband. My husband barely touches me anymore. He has blephartis and now he blames that on me. Possibly my fault, but really that means that overall his skin and immune system and diet are not things that the mites like. He says that if I'm chasing the mites off my body, they will jump onto his. Is he right? He is VERY scientifically-oriented, so any research paper may help.
6. I have two boys, ages 12 and 8. They only know that my face and neck have been very, very red and often bleeding but that I've been to a doctor about it. I'd expected I'd need to treat for a few weeks and then it would be over. ... Right. I have no idea when this will be over. If it weren't mites -- if it were bacteria or a virus, I could tell them the truth. (It doesn't help that I don't want them to discover the microscope lest they break it.) Any advice?
7. How do I keep what little sanity I started with a month ago?
As for standard "how to treat", there is tons I've learned and need to buy and I have to change my diet more. I've been gluten free for something like 5 years, but the rest of my diet usually sucks. I need to get the olive leaf extract pills. Probably Neem. I need a tea-tree mouthwash 'cause my breath is worse and my gums often hurt.
Thanks for listening.