Anyone else dealing with Demodex Mites? What helps?

Please share name of shampoo….

Hi! Know that you are not alone! This is a very supportive and helpful group! And several of us are nurses! I am a year into my journey and my goal has shifted from elimination to control w minimal to no symptoms. I started w 2 rounds of oral ivermectin, 2 months of alternating topical metronidazole and ivermectin all of which helped but the problem persisted. I have also taken Xdemvy drops… I am on my third round. I have been the best w the following routine: daily shower and shampoo w Paul Mitchell Tea Tree oil shampoo, followed by his “leave in conditioner/body lotion”. He also makes a conditioner that I also use after a shampoo. I try to leave the shampoo and condition on for a couple of minutes. I cover my body w the leave in condition/body lotion. And what I have added for a couple of weeks now is I strengthened the TTO concentration in all the above Paul Mitchell products. I purchased 100% TTO at CVS and I now add 3 ml of the 100% to 10 oz bottles of the above three products. Until about 3 months ago, I was washing my bedding on hot settings every day and my clothing daily. I wash my bedding every 3-4 days now and have resumed my normal routine of washing clothing. Two weeks ago I added Vaseline to my nighttime routine. I apply it to my forehead, eyelids, eyelashes, face, and in my nose. While this is fairly intense, it has become my routine and I am better….. in control but far from eliminated! I too have found doctor visits frustrating. My dermatologist has prescribed what Inhave asked her too but is kind of doubtful. My PCP and allergist had never heard of Demodex. I provided them w literature and they are “following w interest”. My opthalmologist is the most responsive. My guess is that he sees it every day in his practice. I am sure you have read that most people (100% over age 70) have some Demodex. And then for some reason, there is us…. Struggling w the infestation version! The literature will say due to being immunocompromised but many of us aren’t! I hosted a zoom call last week and have another one scheduled. I will re-post it in case you are interested. And so know that there are two Demodex groups…. Put Demodex in the search feature if this site and it will bring up the other site. One is much larger than the other. Perhaps we can get Mayo to combine them as there is a wealth of information. Everyone’s story is a little different and people find different treatment regimens useful. I haven’t heard one person say they eliminated the Demodex. I encourage you to take it one day at a time. It was a couple of months ago when I realized I was no longer thinking about it 24/7! And I think you will find this community very helpful!

It looks like you've tried everything. But have you tried 100% Lemongrass oil? As I write this I'm next to my husband who starting immersing himself in that and 100% tea tree oil on alternating days - both of which kill them, and also will do a number on your skin. He's not vain and doesn't care.

We're advised to dilute it, but if you can put up with the stinging, it'll help. No one will recommend 100% anything for fear of being sued. But clinical studies show what kills them, and Lemongrass oil is #1. TTO isnt even in the top 5!

My Demodex problem began with my dry eyes, and after a year when I was having difficulty seeing I looked into cataract surgery but wanted to treat the dry eye first. That's when I learned about the mites. She prescribed Xdemvy, which has been a miracle cure for me. But it's horribly expensive. It's a 42-day treatment of twice daily drops in each eye. During the 42 days there are three life cycles of mites killed off. I had my two cataract surgeries in April after the Xdemvy and no longer have a headache, but I think I'm seeing their dead bodies every day in my eyes' discharge. Looks a bit like your photo, but much smaller. My husband started the drops 2 days ago. I used what was remaining of my drops firvgis eyes and his watering eyes cleared uo, but there wasn't enough to go through all the life cycles.

FYI, We're leaving this Saturday (5/4) for 2 weeks out of the US, so if I'm not responding quickly you'll know why.

I've connected with three other women who are going through very much the same thing you are. (I feel like my eye problem is somewhat resolved m, but my husband is treating it all over his body, and the 3 others are not getting the help they, and you, deserve.

Send me a private message if you'd like to connect.

Take care!!

First, I'd be interested in a Zoom and am on the East Coast, too.

For the Vaseline, I put on several thin layers so it ends up somewhat thick. It doesn't get onto my pillow because I use a pillow that's cut out on both ends so just a part of my forehead and chin are touching it but not my cheeks, etc. Try it on your least favorite pillow case and maybe it won't discolor it.

My cataract surgery went well and I'm amazed at the difference in colors! Moments before surgery, while on the table, I took the opportunity to ask the surgeon to look to see if there were any collarettes - she looked at both eyes and said nothing was there. Yeah! My eye doctor, who prescribed Xdemvy, had told me that she saw one or two. I don't know if she was telling me the truth because she knows they never go away, or didn't recall since I asked her a week after seeing her. Either way, I think the scrubbing twice a day with that nano brush is working. I'm worried since I couldn't do it after the surgery but will ask when I see the surgeon tomorrow (and have her look again!). I did use wipes last night and this morning.

I've noticed a definite increase in itchiness, especially after adding TTO to the shampoo itself. (I hope it's only dry skin and not combative mites objecting to the TTO and pushing back. ) I think I'll try a plain shampoo tonight without any TTO and note itching results. Last night I was not happy , trying to decide if I should get out of bed and put lotion on my back. I've been using shampoo as a body wash too for past couple of weeks and definitely have drier skin. I still think about mite 24/7. Just received a bottle of Tea Tree Special; may have ordered the wrong one, as don't see lavender as ingredient and I believe yours has that. Sodium lauryl sulfate is drying to hair but is effective against mites and fungi (didn't know that) is the second ingredient listed after water .

Which nano brush?

Here's my conundrum...my ophthalmologist saw signs that it could be dermodex causing my dry eye (and I do have rosacea). So he recommended tea tree foam. But I'm 55 and have taken an estrogen suppressing drug for 5 years after a breast cancer diagnosis. So which is it? Mites or zero estrogen?

Was it Paul Mitchell tea tree?

Am I seeing "collars" here? And as for the realness of "die off," I have has two separate tiny itchy red bumps (a bit like a keratosis pilaris that can form around a hair follicle) show up. Pretty sure die off is what it is bc I *never* have bumps on my face. My skin is typically clear of any pimples whatsoever, save a bit of occasional perioral dermatitis that doesn't exhibit the same way.