Anyone else dealing with Demodex Mites? What helps?

Well said. I have been dealing with demodex mites for four years with no long term relief. Couldn’t agree more that doctors need to educate themselves. And they need a change of attitude toward the patient who is living this nightmare.

Completely agree! The lack of knowledge among health care professionals is quite astonishing! Fortunately the ophthalmologists can see them under their high magnification. Dermatologists can do biopsies, but that’s invasive. We have learned a lot among ourselves, fortunately! And I believe our shared goals are to get them under control… not necessarily eradication. And important to know that there are two types of Demodex: folliculorum typically found on the face and brevis found all over the body. You can find some information in the medical literature… seems to be more in the ophalmologic literature than Derm!

Can I ask how long you've been treating these mites? It sounds like things are going well for you. Since I am in the early stages of treating I am wondering how long this mite killing saga is going to be. I wish I had a second washing machine at this point. I checked my machines hot water after tub was filled and it's only 112 degrees which would be harmful to mites, but not lethal.

Hi! I am at the one year mark… hard to believe and w much trial and error! Bless you w testing the water temp of your washer! I never tested the temp but washed all clothes and dried all clothes on the hot cycle! I started last year with what I think ( no biopsies) was brevis all over my body and foliculorum on my chest, neck, eyes, ears, nose and scalp. Interestingly, my whole body symptoms disappeared w two rounds of oral ivermectin ( likely brevis?) but didn’t touch the folliculorum. I had actually started using TTO ( mixed w other oil and don’t know per cent) all over my body for a couple of weeks and then finally saw my dermatologist ( who I think thought I was crazy!) but ordered the Ivermectin. She mentioned to me at the time that Paul Mitchell had TTO shampoo that I might want to try. I started using the TTO products but then tried topical ivermectin and metronidazol for 8 weeks while cleaning my lashes w Avenova and using X-Demvy ( this was through summer and early fall). The symptoms were better but not gone. I realized then that the more realistic goal might be control vs eradication (I have no immunosuppression, BTW). As I read more and more literature… TTO seemed to be the only think known to kill the Demodex. So, I decided to add some additional TTO (100%) to my 10 oz bottles of Tea Tree Special shampoo and combo leave in hair condition/body lotion to increase the concentration of TTO in these products. To be somewhat scientific, I added 1 ml of 100% TTO to the above 10 oz products and have used those products daily and have been in the best control that I have ever been in over the past year. I do daily shower/shampoo w the shampoo….I leave on my face (eyes, ears, nose) and scalp for a couple of minutes. Then after shower, I apply the leave in condition/body lotion all over my body including Face, scalp, etc. I repeat this application once during the day and then before going to bed. My skin is dry for sure. And I find myself differentiating itching due to Demodex vs dry skin. My legs were so dry, I tried this week using regular lotion on my legs. I have tried facial lotion and make up a couple of times but have developed symptoms. I have gone all year without makeup… except for 3-4 special occasions. Each time I developed symptoms, so I am holding off on make up for now. Hope this is helpful. I have learned so much from this group. Hope others will weigh in with their experience. If I were to give advice, I would recommend trying the TTO products w added TTO for 2 months before investing in a lot of the expensive products. And oh, back to the washer and dryer…. I will likely always use the hot cycle going forward. And I have reduced washing my bedding to every 3-4 days( from daily). And I have gone back to regular washing of my clothing (from wearing everything only one day and then washing). I have included a photo of the Mitchell products ( John Paul Mitchell listed as distributors on back in fine print). I do not have a photo of the leave in Conditioner/ body wash but you can find it on Amazon and I got it at either CVS or Target.

Thanks for all the info. I wish my hot wash water could be higher. 130 degrees would be better. On laundry you can't use bleach on many things, so I've been putting white vinegar in some laundry loads . There was no scent after a single rinse. I think it did bleach the towels a bit but that's ok. No idea if its really beneficial but it makes me feel better . I got some Tea Tree Special shampoo recently. Did you have any negative reactions to the oral ivermectin? I realize I need to be more aggressive and will add even more TTO to products. I read (along the way, didn't save article) that overly dry skin is a negative and skin needs to be hydrated. Mites like dry . I never stopped using lotion on my legs and arms which didn't have any mites that I was aware of, and have Cetaphil oil-free hydrating lotion that I am cautiously putting on my face and neck. I want to find out how long these mites live outside the host, on clothing or where ever they fall or rub off . My impression is that I am engulfed. I removed a black head band after washing my face yesterday and saw teeny, tiny white specks that must mites. Exactly uniform in shape and size , so what else could it be ? I remained calm, did not scream . I hope I can maintain sanity dealing with this and suspect that it's going to be a long journey. Having access to this forum is a life saver. Thank you for your comments .

This group will keep you and us all sane! Re the water temp…. I was just thinking that a home’s water temp max is usually 120 for safety reasons. Perhaps you could check to see what yours is and maybe increase it. Great reminder about cetaphil…. I have some and will give it a try. Re oral ivermectin… I had no side effects
Nor to the topical. I think you can get topical ivermectin over the counter. It is used for head lice. I used it once on my head and it helped reduce but not eradicate. I have also done a couple of mayonnaise applications (an old pediatric trick for head lice) and it helped! The topical ivermectin stays on your head for only 10 minutes … not sure what happens after 10 mins… but they all emphasized it. The mayo you apply (half to 3/4 cup) liberally all over your scalp and hair, put on a shower cap and sleep on it overnight and then shampoo. And re your headband….I have had the same reaction when I take off my yoga pants and try to reassure myself it is dry skin. I believe I have read that the demos can live 7-10 days. The thought of it makes me crazy! I used to wash everything after one use but I would rotate my wool sweaters every two weeks, hoping that any demos on my sweater would be dead. It is quite amazing what this all takes. I have more symptoms again so I am thinking that a batch of eggs have hatched…. I called my ophthalmologists office to renew my Xdemvy in case I need it and his message to me through his tech was “TTO, TTO, TTO”….. might be time to buy stock!😉

Thank you for your in-depth post. It is very helpful.

Thank you for all the information you’ve shared. It’s really been helpful and I’m glad you’re seeing positive results after a year-long process. Sadly I know it requires ongoing maintenance.

After completing Xdemvy on 3/18/24 I’ve been taking prescription drops to get ready for tomorrow’s cataract surgery. I’ve also been taking the drops my ophthalmologist recommended for Meibomian Gland Dysfunction, Meibo (drops) and Tyrvaya ( a nasal spray). They’re both outrageously expensive and I learned that Meibo is OTC in Europe at around $18 USD in England and $13 USD in France. They’re $375 or more by prescription here!! I’ll be buying them next month when I’m in France. Meibo’s are the very, very best drops I’ve ever tried for dry eye/MGD. They’re soft, almost silky-like, and when I miss my eye and they go onto my cheek it’s like a lovely moisturizer.

If you’re from, or going to Europe, Meibo is known as Hylo-Lipid in France and Evo Tears or Nova Tears in the UK. They’ve been OTC there for several years.

For washing clothes, 120 is generally the hottest allowed, however the dryer is more important since it can get hotter to kill the Demodex. I’ve had an LG front loader for 5 years and since my recent Demodex problem I discovered the Antibacterial setting. Never noticed it before. However, I just googled to see how hot it was and learned that it only goes to 140. So as I was writing this, I stopped the load that was in there and switched to Steam Sanitary, which is 212 or higher. (Uggh! All those I lost with it not being hot enough!)

On another note, I’ve been doing research using AI and asked I asked Copilot where they live, asking specifically about the ear and below is how Copilot responded:

“Demodex mites, those tiny arachnids that inhabit human hair follicles, can indeed be found in various areas around the face and ears. Let's explore their preferred locations:

1. **Cheeks**: Demodex mites can be found on the cheeks.
2. **Eyelashes**: They often reside on the eyelashes.
3. **Forehead**: The forehead is another spot where these mites like to hang out.
4. **Outside of Ear Canals**: Yes, you guessed it right! Demodex mites can also be found outside the ear canals.
5. **Sides of the Nose**: The sides of the nose are yet another favorite location for these microscopic critters ¹²³.

So, if you ever wondered where these little face mites are hiding, now you know—they're quite the social creatures, popping up in various spots around our faces and ears! 🕷️👂”

Source: Conversation with Bing, 4/1/2024
(1) Demodex (Face Mites): Folliculorum, Brevis & Treatment - Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/22775-demodex-face-mites.
(2) Demodex, demodicosis | DermNet. https://dermnetnz.org/topics/demodex.
(3) What Are Demodex Mites? - WebMD. https://www.webmd.com/skin-problems-and-treatments/what-are-demodex-mites.
(4) What are the manifestations of Demodex in ears? - iCliniq. https://www.icliniq.com/qa/demodex-mites/is-my-tinnitus-due-to-demodex-mites-inside-my-ears.

I personally don’t like WebMD or Cleveland Clinic for anything about Demodex but Dermnetnz.org was a new site for me and one I understand others already know about. I didn't realize they live on our foreheads, so I'm glad I put Vaseline there to keep them from coming to my eyes from my hair. (I put it on my forehead, between my eyes and eyebrows, down the sides of my temples and on either side of my nostrils.)

Hang in there!

Thanks for the references! I find it very helpful to review all of these sites to see what I can learn! Good luck w your cataract surgery! I had both of my eyes done last year and have been very happy w the outcome. I am interested in your experience w Vaseline. Do you apply a thin layer or thick? I am interested in trying and will use a towel over my pillow case to avoid staining! And thanks for the info on the washer and dryer. I think I have those settings on my dryer, so I am eager to test it out. I was wondering if those of us on this site would be interested in a zoom call where we could review what we know, how we are managing it, and accelerate learning from each other. I’d be happy to set it up. I could put the link for the zoom on this page. And if people wanted, we could maintain anonymity by listening only. Let me know your interest and times that might work. I am on the east coast.

Thanks for referring to water heater settings; I moved it higher. I wanted to discuss ivermectin with a dermatologist yesterday, but he knew nothing about demodex mites, I mean it. I reminded him they were incredibly tiny, almost impossible to see, he checked my scalp and back (without aid of any magnification) and pronouned me "all clear". I didn't remain long in his office and had impression he thought I was quite balmy. Even my primary care doctor a couple weeks ago was somewhat skeptical when I told her about the mites. I'm not getting much help from doctors I've seen on these mites, and am grateful beyond words for your advice and sharing. Thank you a hundred times for these posts.