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!

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.

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!😉

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.

I have an appointment with another opthalmologist who supposedly is familiar with demodex problem. Crossing my fingers. I've decided I need to modify treatment so the push back from these mites is less severe. My discomfort, itching, burning etc. increased three fold since I began end of February / early March. I never had itchy rash or bumps on my legs or arms or entire back, but now I do. If they were already under the skin in those places, they were quiet about it. My fear is they are actually new residents there. I think "die off" is misleading, and must come later, does not apply to what's happening with me. I had a single, vertical line of itchy bumps along my right temple at the hairline so applied 100% TTO after my shower. Because itching increased so much I went to look at what was going on there. Within about 30 - 45 minutes, the number of itchy bumps had expanded sideways from roughly 1/2 " to almost 3 " and vertically from about 2.5 " to 4". So, the critters were moving away from the TTO at warp speed. Fascinating , yes, but also very upsetting!. TTO is clearly a killer, but has a down side that's difficult to accept, for me anyway. I'd be interested to hear any suggestions on a modified treatment approach. The in-vitro trials' revealing results and discoveries, suggestions of products and how to use them do not transfer so easily to the normal day to day .

Hi all…
Just checking in. I did check w the MayoClinic site about creating a zoom call but they said they cannot add another one at this time. I will look into setting one up w zoom and post it on this site. I tried adding the baseline to my face, eyes, ears and nose at night and it is definitely helping. I do it on top of the daily TTO shampoos, washes, lotions etc. that I described earlier. I also started using a sauna ( temp is 160 degrees). I did it for three consecutive days and it too seemed to help. Again, I have modified my goal to “controlling” them vs “eliminating” them. I saw my dermatologist this week. It’s been a year since I first saw her. She like my opthalmologist said TTO, TTO, TTO. She offered me Ivermectin and Metronidazole but I said I didn’t feel they did much more than the TTO. And I would prefer to do this naturally if/when possible. Though I am on another 6 wk round of Xdemvy. I also added more pure TTO to the 10 oz bottles of the Mitchell products. I have now added three ml. I appreciate learning about the Vaseline. And I put a towel on my pillow to minimize staining. All for now. Hope everyone is doing ok w whatever regimens you have worked out. It is frustrating but I find that the demos don’t wake me at night anymore and I am not thinking about them 24/7.

Hi…oh dear, sorry to hear this. I have had those red bumps on my chest and back of neck and might have one or two of them on my back. I currently have one on my chest so out of frustration, I dabbed it this AM w 100% TTO. I showed this one to my dermatologist earlier in the week and she didn’t know what to make of it. When I first had the demos ( or little fekers as I call them!), I am pretty sure I had them all over. As I have learned more, my sense is that Inhad both foliculorum and brevis. Interestingly, when I took oral ivermectin early on in my fight, it seemed that it wipes out the brevis… as my total body symptoms seemed to disappear. And subsequently, my crawling, itching and stinging symptoms are on my scalp, face, eyes, nose and ears. I am feeling optimistic again w adding Vaseline to my night time ritual of washing with the TTO shampoo, applying the TTO leave in condition/body lotion ( all over above areas except scalp) and then covering all those areas w Vaseline. I sleep on a towel covered pillow case so that I don’t ruin my pillow cases. I find the scalp tricky…. I do the shampoo, use the TTO hair conditioner, rinse that out and then apply the leave in conditioner daily. But find by the end of the day, I am feeling the symptoms on my scalp, so I apply the TTO scalp treatment from OGX ( photo below). Again, nothing making them go away completely… but feeling more under control and manageable. I haven’t increased the concentration of TTO in this product yet, but will when I buy a new bottle. Hope this helps!

If you are healthy with no other illnesses and are not a transplant patient or immune compromised the mites should be considered normal everyday harmless companions. Your dermatologist probably is puzzled why this is an issue that you need to treat. Please be careful about irritation and over treatments.

Me again…..

So, Inhave set up a zoom for Saturday 4/27 at 11AM ET. The invite is:
https://us04web.zoom.us/j/76192969812?pwd=dVr4d8hbV5jgbkec6elT5X3t
I put in Nancyjg and aljiu. Zoom asks for emails, but let’s try w Mayo initials and see if you can get in w the invite. Anyone is welcome. Our time will be limited to 40 minutes. We can decide if we need more time and or periodic meetings. Let me know if this will work and if you are game for trying it!

Try Hydrex which is Chlorehexadine basically Hibiscrub. Get Dermol cream from Internet and rub garlic powder, cinnamon powder and olive oil together and exfoliate regularly, leave on body for 10 minutes and wash off. You won’t have any problems after a while.