Anyone else dealing with Demodex Mites? What helps?

I don’t know where to begin, but I have been dealing with an infestation of what I believe to be Demodex mites. WTS, it continues to get worse, and is now everywhere I have skin….. that’s right, EVERYWHERE. NOT ONE SINGLE MEDICAL PROFESSIONAL has bothered to take a skin test, they tend to want to “treat” my condition as a mental health issue- I’ve seen dermatologist’s and was involuntary committed to a state run mental facility and still cannot get a medical professional to at the very least take a skin sample. If it is in my head- at least PROVE that it is in my head. I know better. This condition is slowly ruining my life. When the “sensations” (movement, itching and stinging) start- I cannot focus. One- because I just want it to stop, and 2.- because I literally cannot focus because I can’t see. I have no eyelashes and pretty much have plucked my eyebrows completely off because I am trying to cut off these f****** food source. (Desperate means take desperate measures)These mites have taken over as it’s all I think about- while trying to lead a a normal life. So I was glad to find this thread and the dates are very recent- because I also believe that this is condition under diagnosed and misunderstood. Yesterday I was in a Zoom meeting where there were 146 attendees. So in my book- 1 out of 146 people have it. Yet NO ONE is getting the help we so desperately need. These things are on my face, in my nose, ears, eyes, scalp, under my fingernails, even my private parts- because they aren’t getting treated. It’s the eggs that are the problem. And there are hundreds of thousands of these that cyclically hatch, perpetuating the problem. The skin on my body is rough like sand paper. (It’s mites) they also sparkle like glitter- I assume because of the mucous like substance. So I can see then on my clothes. Especially black- the other day I took off my black shirt and the inside of my shirt looked as if I had been rolling around in glitter! (I hadn’t) This thread is only addressing face mites, and I am experiencing both face AND body mites which (at least information on the internet) are different from each other. I don’t care if they different, or the same, I just want it to stop!!!!! Tea tree oil ? Got rid of some, it just came back. Everything to treat it lies in the expensive, I don’t have that kind of money. Diluted bleach helps. (Again…. DESPERATE) but not good) so I have resorted to 91% isopropyl alcohol- I already hear you thinking this is causing my dry skin- no amount of lotion or oil - anything moisturizing, has worked…. because it’s not skin, it’s mites. If it isn’t mites, please, I’m begging, someone, anyone, prove it! This s*** is literally ruining my life. The mental aspect of this condition has been soul crushing. No one is listening and everyday this goes on- the life I once knew, dies a little more each day.

I work in a school building full of mold which made me immunocompromised. Chances are you work or live in a building with mold. This is the connection that healthcare professionals (in my experience) do not understand or acknowledge. It leads to situations like ours. And yes extremely frustrating, expensive and unnecessary. I am on Accutane (to stop oil) and topical cream to stop allergic reaction / inflammation as the Demodex die off. After 2 years, I have finally found this combination to work so far. I’m 3 weeks in so it will take time to recover after being misdiagnosed while the infestation continued to get worse.

Like you, I’ve struggled with Demodex for years. I have tried everything from several different dermatologists. Finally, my current dermatologist put me on low-dose Acutane. It works wonderfully! I have been on this regimen for about two years and during my time with Acutane, I can honestly say that I do not have Demodex issues at all. However, Acutane itself causes some other problems for me, even at very very low doses. So, periodically I have to go off the Acutane. Whenever I am off the Acutane, the Demodex problem returns. So I am currently experimenting with different periods of taking low dose Acutane versus no Acutane at all. Right now I am doing four weeks of 10 mg Accutane twice a week followed by three weeks off. Hopefully I will eventually find the perfect balance, but for me anyway, Accutane was the only real answer for my issue. Oh, I do also wash my hair daily with tea tree shampoo, use tea tree conditioner, and tea tree body cream. All are by Paul Mitchell. They are not enough by themselves, but I do believe that they help make things better overall.

(@matikowskic, your mold theory is appealing to me. I have been exposed to mold in my life. And many years ago had surgery on my left lung- I had walking pneumonia that was resistant to the antibiotics. So- this is definitely something. All the information on the internet says immune-compromised and I have been wracking my brain trying to figure out how I could be. The medical community has been awful. Simply awful. Condescending, disrespectful. It only adds to my frustration and self worth. I am so sick of these F******!!!!! I feel like a rape victim getting re- victimized by the system. I cannot afford doctors, I paid the last dermatologist $215 for her to tell me “that’s a nice story”and that she can explain everything I pointed. She did take a skin test- but it was the wrong kind to test for demodex, they ended up calling me to come back in, but I declined because I can’t afford the results anyway. I need help. When you know….. YOU KNOW. I don’t know what to do, no one believes me. They just write it off and think I’m crazy. Meanwhile, i die a little more everyday I deal with this REAL condition. I can’t work, I don’t touch people, I do not want to be the reason anything like I’m dealing with happens to them. No one understands what I’m dealing with. I’m glad I found you guys. But I still have mites.

i am not immune compromised either but I am 73 yrs old.I started out with Rocesia and then progressed to bad cystic acne,wen t from there to burning itching even in pubic hair and nipples. I want to share what I have learned so that others wont suffer as I have. These are the things which I am using that are starting to show results.
I shower every night with sulfur soap 10% including on face I use Azufre brand, I also use a natural bore bristle brush for showering along with a special brush for face..I use Azel iac acid and ,tretinoin cream on my face along with metronidazole but not always all at once for all these products,although many times I do layer them. I have just started oral Ivermectin and plan on staying on low dose the rest of my life to try and keep a overgrowth of mites away. and I will be using premetheine in the same way that it is used for scabies sufferers soon. My face has really cleared up and the use of sulfur soap has helped at shower,i also use paul Mitchell Tee Tree shampoo and Tee Tree oil from Austrilia for lashes eyebrows ect.All this is really helping but I hope to put an end to the overgrowth once I do the premetherine treatments along with a little more time on the Ivermectin. This is a horrible proplem and most Doctors are NOT HELPFUL,you really have to serch far and wide to find one and I finally have!

my dermatologist of decades didn't believe me when I described my itchy scalp! "It feels like crawling teeny bugs!" and gave me Selsun Blue. SOOO frustrating. Every appt: my itchy scalp and forearms. For years!

Aha!! Now I will solve it myself! Also found a patent application for use of ivermectin for the two main Demodex critters.

I've made my own skin serums for two years with cold pressed oils. Just ordered Black Currant Oil to add to TTO & Rosehip/Borage oils (most GLA of all, more than Borage oil). Never heard of Vaseline for the itchy forehead. (thank you). I can't wait! And it's good to know I'm not alone! You all have my sympathy.

I even told her the 'scaling' reminded me of scabies! (I'm 78). She said it was 'dry scalp'....

Why are doctors so oblivious to a seemingly obvious and common problem. So many people suffering for so long for no reason other than their unwillingness to listen, learn, and research for their patients. Dismissing people and misdiagnosis only add to the pain, suffering, and decline of their mental health. I have had the same frustration with physicians and their quick judgment. Where have all the good doctors gone?

Again, I’m so sorry you are dealing with this but you are not alone!! Take pictures or use tape to get a sample. They can’t deny if they see them. Keep searching for a doctor that cares and is knowledgeable. They will give you oral ivermectin. Don’t waste your money on anything else! Tea tree oil was not helpful. Initially I paid money for scar cream but the hyperpigmentation was from Demodex mites. This was way before I figured out what it actually was. If my dermatologist had known, I wouldn’t have suffered so long and it wouldn’t have ever gotten this bad. So like you, while I was misdiagnosed and ignored the infestation continued to increase and my mental health has suffered. Once you get the ivermectin (or Accutane) it will take weeks if not months to be clear but at least you’ll know you are on the right medication. Again, forget all the other products. My skin is slowly getting improving. The die off causes a reaction so it does get worse before it gets better. The whole thing is so embarrassing and your self esteem takes a hit, that’s for sure. . It has impacted my life and my family. Why do they test dogs for parasites but not humans? Seems so arrogant to think it is only a third world country problem. Regarding mold: My coworker at school had pneumonia in the spring due to mold in her classroom. The school and administrators never shared the info about the mold. If it was in her room, it is everywhere as it is all one heating system! Now she has scarring on her lungs and sees her pulmonologist regularly. The school took no responsibility. I hope you are no longer exposed to mold! I need to get a different job. It is not worth exposing my body any longer and unfortunately OSHA doesn’t take mold seriously enough either so public schools do not have to actually provide clean air as long as they “say” they are cleaning/mitigating. People will continue to have symptoms and diseases and never know that mold is the culprit because environmental considerations and questions are not part of our doctor visits. It seems logical but it’s not. I don’t know why people do not want to admit the harm that mold causes. It can be the catalyst for cancer and so many other things. This is not a third world country problem, mold and parasites live in the U.S. I believe it would cost some people lots of money to admit/fix the problem so it is kept quiet while people continue to suffer. It is infuriating. I hope you find a good doctor!! Hang in there.

10% Azelaic acid is helping me.