Anyone else dealing with Demodex Mites? What helps?

Sorry to hear what everyone is going through. Thanks to all of you for sharing as I believe we have learned so much from each other! I’m a retired nurse and even told my dermatologist that I would do a grand rounds ( wkly or monthly medical conferences) on Demodex infestation. The lack of awareness among clinicians is astonishing to me! Nevertheless, I did get the “grant” for one year of treatment to XDemvy. My ophthalmologist tried the first round of prescribing and was told I wasn’t eligible. For the second round I called Tarsus myself and applied and waited a cpl of weeks and got the grant. So after paying hundreds for the first round, I received the second round free. I had mixed reviews on XDemvy…. It doesn’t kill 100%….. it gets them under control. I am now using Paul Mitchell’s tea tree oil, even on my (closed eye) eyelashes and I seem to be maintaining “control” not eradication. I use the shampoo for daily shampoo and body wash and the hair and body conditioner for my hair and whole body after shower. They are not gone but definitely better. I am very interested in learning about the erythromycin ointment. Is that taking care of the Demodex? Thanks all!

Are the new eye drops more effective to kill the mites than focusing on treating the eyelids? Over time the price will hopefully reduce. Is the Paul Mitchell tea tree oil you use on eyelids totally tea tree oil or a lid wash that contains TTO? I was debating last night whether or to use the straight TTO on my eye lids. I made the mistake of diluting 100% TTO with water but discovered that doesn't work. Diluting it with oil sounds a bit counter productive since the mites are attracted by oil.

This Monday (3/18/24) is my last day of the Xdemvy drops and I have an appointment that morning with my dry-eye specialist to see how I did. Wish me luck!! I do other things in addition to the drops, so I won't know for sure what's helped. But at least I can now open my eyes in the morning without having to spray something on them.

I'm impressed you got it for free for your second round - congrats!! I paid $997 and was told the next would be around $750, but I like free better. I was hoping I'd only need the one round. We'll see. I had called Tarsus in January to find out about the grants they had and the person I spoke with didn't know anything about it, nor did my pharmacy. You've given me hope!

I believe the erythromycin ointment serves two purposes and killing them isn't it. First is for inflammation and second is to not let them mate or move around at night. You have to really get it into the lashes at the margins, top and bottom, which isn't easy. Don't do it if you want to read or watch TV; it's the last thing I do before sleep. The only thing that really kills them is 100% TTO, which I use on my eyebrows, and now in my nose. I'll be doing that for 6 weeks twice a day, like the Xdemvy.

I read today that the collarettes are debris as well as eggs, so washing the margins is really important. The best thing I've found is a tiny brush by "We Love Eyes" that I got from Amazon that use twice a day. I hated it at first but after using it dry and looking into a 7x magnifying mirror it's easier to do. Then I do the TTO foam and then a TTO wipe.

Let us know what department you spoke with at Tarsus! Have you seen their ads? They bill it as a mite party on our eyelids. They seem to be trying to lighten it up because people get grossed out when they find out everyone's got a parasite living on their face. They're also doing an outreach to doctors about it, so there's definitely progress being made!!

Again, congrats! Please share!

If you use 100% TTO, you may want to put it on a Q-tip so you can control it.

Re the PaulMitchell… it is the shampoo that I was my hair and face with. Then I put the body/hair (leave in conditioner) on my hair but all over my face and I scrub my lids and eyebrows with it. Of course the problem is that it contains tea tree oil, ( also lavender and mint) but it doesn’t indicate per cent age. It is about the third ingredient in the list of ingredients. Last week I decided to increase the TTO in each bottle and added 1 mil of 100% TYO to an 8 oz bottle. I think that has helped even more, though it now smells like terpentine ( my husband me has assured me that he can’t smell it!). So, that is all I am currently doing. I am going to buy the eyelid brush that Nancyjg has recommended. I tend to have very sensitive skin, so I have been careful w TTO, but so far so good.

I was just on Amazon and was unable to find Paul Mitchell tea tree shampoo or lavender mint . Could it have been discontinued or they just don't carry that one? Lots listed but only specific ingredient was for Awapuhi with cucumber melon for fine , static-prone hair , which actaully sounds right for me. But no tea tree.. I liked and used this brand years ago.

Hi, cmcg, please disregard my previous reply . I finally looked on the PM website and discovered Tea Tree Special, that I assumed was another brand, is theirs. I noticed it before, but I saw nothing on the bottle itself links to PM. Thanks for the details on how you use it on your face as well. I will add this to my arsenal .

Amazon has some of their products. I have also found them at CVS and Target! Glad you found them!

I just looked at all of my bottles and as you mentioned, the brand is Tea Tree Special. You will see “ distributed by John Paul Mitchell” at the bottom on back in finer print.
As for the XDemvy “grant”. The Carepoint Pharmacy processed this application on my behalf ( I worked through their customer service… I did not keep the name of the person who helped.). They applied to: Healthwell Foundation and the specific fund is the “Blepharitis Foundation”. The grant is for the year and covers specific medications; Xdemvy in my case. They reimburse co-pays only. There is a number for Healthwell “processing questions” 1-855-326-9533. My ophthalmologist initially contacted Carepoint and was told I was not eligible. I called the Carepoint Pharmacy to see if there was any assistance available and they put me on hold for about 15 minutes and said that I had qualified. I received paperwork and a pharmacy card w grant info for any pharmacy I use for the Xdemvy in the mail. I believe that Xdemvy is still only available at specialty pharmacy…. Not sure how many specialty pharmacies. Carepoint is the specialty pharmacy used by my ophthalmologist’s office. Hope this helps!

Hi…. I never did have any adverse reactions to any of the treatments. I am now ONLY using the Tea Tree Special products and having the best effects ever! I use the shampoo for my hair and a total body wash including eyelids and lashes, ears and nostrils daily. Then I “lotion up” w their combined leave in hair conditioner … again, all over my body. I then reapply the lotion before going to bed. And I did add more tea tree oil to the 10oz bottles. I put in 1 ml of 100% TTO into each bottle (shampoo and leave in conditioner/lotion). My skin is dry but I have hardly any symptoms! I don’t know if anyone actually 100% eradicates the demodex… but I am close. I no longer think about it 24/7. I am still changing sheets every 3 days but am back to wearing and regular rotation of my clothes w usual wash cycles (though always on hot water cycle and high heat in the dryer).