Anyone else dealing with Demodex Mites? What helps?

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.

Outrageous. You don't deserve that.

Keep changing doctors until you find one that's educated. When you see your ophthalmologist, you may want to ask them to recommend a derm who knows about Demodex.

Yes!!!!! It's taken my will to live. I'm dismissed and put off as crazy. I've been battling this and don't know how much longer I can. I cannot get any help. I've shown pictures and you can tell by my face. It's as if they are just too afraid to admit what it is or they don't know and don't bother to get me help. I'm suffering and trying to hang on.

I have to disagree with you regarding dermatologists. They do not seem to care; they act like we imagine our symptoms and don’t know what we are talking about. (My ophthalmologist has been the most understanding of my situation.)The latest NIH abstract that I read said in the conclusion that dermatologists need to learn more about demodex mites, among other statements. Good luck to you on finding a healing solution.

I hear you!! . You are not alone in your frustration and anger. The dermatologist I saw recently and I nearly came to blows , she insisted loudly it's impossible to see the mites, while I insisted that I saw them. A report on NIH site states when mites die they release their "exoskeletons and internal contents"; your pic looks like that... very white, much larger than the mites themselves. I've seen lots of that stuff ; it was horribly upsetting the first several times. The folliculorum are the larger mites and are visible, very tiny, almost not there but I can see them with a magnifying mirror, turning to get the light just right on the spot. I have a specimen sheet to take to my next appointment . Scotch tape pulls them off your face; paper tape is more comfortable but can't use for collecting. I taped them to a dark blue folder; they're easy to see, tiny specks , but visible. They maybe only bits of the exoskeleton , that's ok. I dated and described where on my face I found them. These dermatologists I've seen are rigid, opinionated and closed minded. Something they read once in med school stuck in their brains ...zero ability to think outside the box. One male doctor last month even know what I was talking about ...demodex mites, no clue. Hang in there.

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.

Good to hear from you again. Since you've been dealing with this for a year maybe you can remember if this happened to you. Before I started using the TTO shampoo and body wash, the mites were located on my head - eyes, face, hair, ears - and some ( not all ) areas on my back. I started using TTO consistently about March 1. Within the last 2weeks I discovered numbers of bumps or red spots, some very itchy, others not, from mites on my arms, legs , expanded rash on back and especially back of neck and temples. I'm wondering if the TTO treatment is causing their migration. That seems more reasonable to me than there were silently there all along with no physical symptoms on skin surface. I'm very concerned and am moving into "alarm" stage very fast. Did you experience anthing like this ?

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.