Anyone else dealing with Demodex Mites? What helps?

I can't deal! I have psoriasis!
I believe I have an infestation of dermodex blepharitis living on my scalp, face and lids maybe even my privates! All the doctors I've seen haven't used any technology to see them so they think I'm just bugging out! Also got a case of Lice. I'm going crazy with these parasites and I don't want to pass it on to my 15 year old son! I need help desperately seeking Norma!

You're not alone.

Demodox are immune to so many things and hard to get under control. They've lived in our ecosystem for how long and with all the things we eat, take, and put on our skin it's almost impossible it seems to treat. Most Doctors haven't a clue and usually misdiagnose. There is also the misconception that they are microscopic even in a person that has a severe case of demodicosis. You can see them at that point. You can even feel them. You cannot see the true body of course with the naked eye, however they are visible. I believe I posted a pic of one that was huge compared to being microscopic. I had about 5 large ones come out of pores on my lower face. It freaked me out that I didn't take a pic of that, however I took a pic of one that was removed. Drs etc ignore when I show it to them and do not believe it.

It happened to me. I couldn't believe it either when it was happening, however it did. Our healthcare system is way off in a lot of areas with parasites, Demodex, and other conditions they can't explain and refuse to find out. It's like Morgellons almost. I watched that documentary Skin Deep about it and so many similarities in dealing with the condition. The body manufactured the fibers under their skin. The body in the case of Demodex is almost attacking itself so to speak. There is a correlation with the immune system, stress, oily skin, and probably the gut and antibiotics. Drs associate Demodex with Rosacea and diagnose as such. They also call it that with the results of a biopsy a lot of time. It's crazy that there's little to no help for people that have this condition. You can look it up and find that it is indeed a condition with a name when the numbers are way too high, however getting treated for it is a different story.

I've tried so much stuff just like so many. I'm now waiting to try Isotretinoin/Acutane from a Dermatologist I finally found that is at least more open to this condition. He still doesn't quite understand or believe the hell it has caused me etc, but at least he is trying to help me. So many DR's gaslight their patients instead of trying to listen and understand. I also had him take a biopsy of a place near the corner of my mouth. He did not want to and I begged him. The results haven't gotten back yet, but I'm sure it will be the same as one other I had from a different Dermatologist. (Rosacea type Dermatitis) SMH

You can clearly see this stuff on/within my face. I cannot wear makeup at all. It is worse with makeup. It's like trying to cover sandpaper. My case is extreme. I told them I should be a case study. I've had 2 DRs try to refer me to Wake Forest, but no response back from Wake. No one wants to study or research this condition further. My heart goes out to you all. I understand the hell/harm/destruction it causes.

Thank you for sharing your situation. Facebook also has a Demodex support group* that has 188 members as of today. It was only 104 back in Jan/Feb of this year (2024) and I'm sure there are hundreds of others out there who are suffering but don't know about the groups. Some of the members are desperate and are using products for animals since veterinarians seem to know more about Demodex than doctors working with human. And those products are readily available.

I called my derm two weeks ago because my husband is concerned that he has demodicosis in addition to his psoriasis and wanted an Ivermectin prescription. He and I have been seeing the same dermatologist for more than 20 years, but when I said we were concerned about Demodex the person I was speaking to said they'd get back to us. They did and said they don't (won't?) deal with Demodex. Amazing! But they deal with Rosacea. It's the ophthalmologists who seem to know the Demodex problem, but the word unfortunately hasn't reached others yet.

In the 1960's my husband went to a dermatologist for his psoriasis and was told his condition was due to stress and implied it was all in his head. They didn't know, but acted as if they did. Which brings me to your mentioning Morgellons. I had never heard of it until a few months ago and looked it up, only to discover that it's considered delusional! In fact, I looked it up again just now and in April Mayo wrote: "Delusional parasitosis is a condition in which people firmly believe that they're infested by parasites, mites, worms or other organisms even though a physical examination by a healthcare professional doesn't support this idea. The condition also is called delusional infestation. One form of delusional parasitosis is Morgellons disease. Symptoms of Morgellons disease include the feeling that fibers are emerging from the skin. People with this condition often report feeling as if something is crawling on or stinging their skin. The intense itching and sores that come with delusional infestation can severely interfere with quality of life."

WHAT?? Whoever wrote this is delusional themselves because they must believe everything to know about skin issues has been discovered, researched and determined, so there's no need for further research. For this person, I recommend changing professions. This reminds me of the story about the head of the Patent Office at the turn of the Century (19th/20th) who thought his office should be shut down because everything has been invented that could be invented. It may be an apocryphal story, but it demonstrates the small thinking that we're still getting from doctors these days. Don't forget it's the same medical profession that advocated bloodletting, leeches and smoking.

FYI, a few of us are thinking about how to approach doctors/dermatologists to get the word about Demodex.

Hang in there.

* FB has several groups but the one for humans is the one to check out. It's not trying to sell you any products.

YES, that's what the DRS/Dermatologists were doing to me. She's crazy and has that condition where she thinks she has parasites. SMH!!!! I dropped my primary DR due to major gaslighting like this. I've about lost it on several Physicians for this same thing. They don't want to hear what you're going through if it doesn't suit them. To treat people this way that have never exhibited any delusional behavior is unacceptable.

If you haven't seen that documentary Skin Deep, I suggest it. You can find it on Prime. It's not too graphic and it's familiar with the way Physicians treat people. Mine has calmed down some, however it is still severe. I did have sores all over my face and now it's just a couple trouble spots where they keep attacking. I still have noticeable scales/track marks/ visible white mites that look like lint balls/boogers/grit/skin flakes etc. It's all in my face and is relentless.

Yeah, I've taken Ivermectin on a couple of different occasions. It didn't seem to help me. I hope you both can find some help on treatment. Like most, I self diagnosed by researching and after many things didn't help it, and due to the appearance of my face. I have the glossy white sheen, extremely oily, and with what else I mentioned. I just clicked to join on that fb group. Thanks. There's that other page I've read posts on too. (Barbara's Demodex)
https://www.facebook.com/profile.php?id=100086502830383
I think all the stress I've been under is a major factor in mine. I lost my job almost 2 years ago as a Detention Officer due to retaliation etc. They put me through hell before they gave me walking papers. I've been blacklisted and branded as a whistleblower. Anyway, it's been pure hell with it all. I am able to actually sleep now though. I was so eat up with them that I kept feeling them crawling on my face at night and until you've experienced this, you more than likely wouldn't understand. That is one thing that puts you in that delusional category with Drs and others that don't know. I can still them periodically, but not near as bad. You can sometimes rub them off where you felt it. I can rub my face with a washcloth and the white dots/mites come off. I can shower/wash off my face with water and you still can see these white balls. I can't of course get them all off, but just evidence of how bad they can get. I'm not even talking about all the ones deep in the skin that you can't rub off.

I told the DRs that put me in the nut house category, I was headed that way from all the gaslighting by DRs and all I was going through with Demodex and no help. It's unreal.
Take care.

Wow, you've been through a lot! I read Barbaras' site every couple of weeks. It's amazing how many people are suffering, yet doctors just don't get it.

Suggestion - to cut down on the oils on your face, have you tried using salicylic acid? It's good for getting rid of sebum that the DD's love (it's not a real acid). I use Paula's Choice and find it's amazing. I don't use it often, just when I feel a need for exfoliation. Good to do it at night. Starve those little guys!

Hang in there. You're not crazy, you're just surrounded by ignorant, arrogant doctors, as the rest of us are.

Hello, Ladies. Im Donna and I have Demodex or it feels more like they have me,my face,eyebrows,eyelashes,eyes,ears,nose,mouth. Its horrible. And the opthamologist acted like he'd little knowledge about it and didnt want to get close to me. A doctor said most cases are patients that it is all in their head,,like we are all lunatics that dont know whats going on in our own bodies. Also had a nurse say she was going to give me a drug test first. They all say they dont have the equipment to do a biopsy to verify what i already know ,therefore i cant prove Im not insane. Im seriously tired of being treated like im an idiot. I think they are all over-paid, unqualified, rude and hurtful people. I did get ivermectin perscribed which is supposed to paralyze the mites and clearly doesnt,besides what happens if it does to the mite carcass. I dont want them to remain under my skin. I want something that makes me so offensive to their senses that makes them want to gather their mate and all their children and vacate and never return .
I feel ill at times and i think its from the bacteria from them. I believe it is an issue that should be taken seriously and urgently,instead of having uneducated medical help with biased opinions to offer. And why and how can this new medicine Xdemvy cost so incredibly much?

A consistent thread in posts on Demodex is this stubborn refusal by doctors , mostly dermatologists, to acknowledge this problem even exists. I fail to understand their absolute rejection. I've had arguments with three different dermatologists about these mites; they actually became emotional , adamantly rejecting what I was describing , what I was seeing. The first time, I thought it was the way I presented it; I was tense and distressed .... so maybe they were affected by my own emotional state. But three times, different doctors. Unlike any office visit I ever had. As I left each time I would wonder "what is going on "? Why were they disturbed or upset by what I'm telling them. . I have an appointment with yet another dermatologist later this month and dread it, anticipating a repeat of past experiences and no solution . I'm becoming frightened I'll have this problem the rest of my life and that is an unbearable thought.

It is very common for doctors to not know about this, but veterinarians do! Doctors think you are hallucinating. The doctors who are the most helpful are Integrative Medical Specialists because they treat the whole body, and Demodex overgrowth is the result of an impaired immune system. I have had demodicosis for 8 years, but found a doctor 5 years ago and have made great progress. I have been studying the problem and creating treatments for 6 years. You might like my Facebook page where I have posted the years of information I have gathered from medical journals, my doctor, and my own experimenting. The page is just information, no comments. The address is
Barbaras Demodex III (no apostrophe in the name).

We all have Demodex mites in our skin, and they are controlled by our immune systems (general and skin). If something happens to our immune system, and it is severe enough (can vary by person) the mites will not only over-populate, but grow larger and become visible. There are dozens of things that can affect the immune system, and usually it takes more than one to cause demodicosis. Things like autoimmune diseases such as Grover’s disease, diabetes, MS, lupus, etc, but also severe stress, toxins like mold, Lyme disease, Covid, other viruses, hormone issues (common with pregnancy), etc. In my experience Lyme disease and toxic mold (with toxoplasmosis, etc) are very common. Because it is an autoimmune condition, is why Grover’s disease or other autoimmune conditions pop up in the search. I have a FB page that I’ve worked on for 6 years that contains information and remedies. I did find a doctor to treat it, and he approves of my page. The address is Barbaras Demodex III. I hope this helps.