Anyone else dealing with Demodex Mites? What helps?

Every time I search this entire site for info on demodex mite help, I get grover's disease. They are not the same. So will you please create a demodex mite group under Skin Health?

It's one of the "go to" medications prescribed for this problem. I'd prefer to use natural products, so plan to investigate caraway oil soon. Yes, I have very dry eyes . My Xalatan eye drops for eye pressure are an irritant in itself for dryness. I use moisture drops all the time which I think contribute to blepharitis and mites- the lubricant . It started with the burning, itching eyes but then I noticed this past year constant new, tiny bumps and roughness on my face that I couldn't understand. So I started this journey and questioning from there. Itchy scalp too, but that is not anything new. So I think this overgrowth must have been a slow process over time. Have read is more predominant in the older population.

I've gone through quite a few different drops and the one that I've settled on is Hylo-Forte, which gives a precise drop. There are several Hylo drops, but this seems to be the best, at least for me.

My dry-eye specialist at Scheie eye Institute (part of U of PA) prescribed erythromycin ointment to use every night. Before telling me about Demodex, she had told me to put it on my eyelid and onto my lash line margins (upper and lower). I agree with everyone that doctors don't like to talk about Demodex and she didn't tell me that they live on our lids, and that by putting the ointment on the lids it will keep them from moving around to mate at night. Putting it onto the upper and lower lash margins also prevents them from mating, and hopefully suffocates them (although I hear that's a long term issue). I know people use Vaseline, too, but at least the erythromycin is also an antibiotic.

This year I also started seeing tiny bumps and roughness under my eyes, which miraculously disappeared the first time I used Salicylic Acid. It didn't take care of the wrinkles, but at least it's helped a bit. : > )

I didn't have a lot of itches on my scalp and started noticing them when I started reading about other people's issues. As I've written before, I used 100% TTO on my scalp, waited 10-15 minutes (keeping my eyes covered) and then washed. I've done this 3 times now and if I have an itch, it's not persistent. I also laid down and put 100% TTO on my eyebrows and hopefully have killed them there. I've been losing eyebrow hairs over the past few weeks and hope they're now coming back. I just got them back after losing them and my eyelashes to chemo in 2021. But I know that losing eyebrows as we get older is normal. Horrible, but normal. It's my understanding that by the time we're in our 70's or 80's that 100% of us have Demodex.

Did you see the Xdemvy video animation of the Demodex? Not the one where they have them somewhat cute (if possible) and jumping around, but the one where it shows how they live and move around in our hair follicles.

Are the Hylo-Forte drops a lubricant for dry eyes or prescription med for eye pressure/retina protection? .
Did you put salicylic acid around your eyes? That sounds risky to me. My only salicylic use is pore clearing, oil eliminating astringent and is very strong and irritating , actually stings. How do you keep the ointment from getting into you eyes? I also read about the vaseline ---- but same issue? However, I'm about ready to do anything at this juncture, my eyes are burning so much today, all day. It stops for only 1-2 minutes after I use the Refresh moisture drops, but then starts immediately . It's getting to me. No, I haven't watched the video; I was afraid it would only make me more frantic about this mite problem. I'll try to build up courage to watch it. I've seen lots of color photos of the mites in the eyelashes and it's too gross for words.

I'm sorry you're going through that and the Refresh only lasts a few minutes. The Hylo-Forte is not a prescription and I get it through Amazon (see photo). It's for dry eye and wasn't something my Dr recommended, but I found it by reading lots of reviews for other products and it's been working for me. Ive been desperate and buying everything and today found an unopened box of Refresh that I got before finding the Hylo-Forte, and the other Hylo's that were less lubricating. Maybe I shouldn't be using them, but it's working so far. I've gone through many types of drops and maybe it works well because I'm on Xdemvy. Has your doctor talked about XDEMVY? It's horrifyingly expensive but it's been working for me. My 6-weeks on it is over this Monday, 3/18/24 and I'm seeing the doctor that day and can let you know if she says the Demodex are under control. If I need more I'll see if it's any less expensive now that its been on the market longer. I'm still reeling from the $997 I paid, but hear it'll be $50 or $100 and possibly covered by Medicare next year. But my headache is gone and I can open my eyes in the morning (but still put drops in either immediately or within a few minutes).

I used Paula's Choice 2% Salicylic Acid and put it under my eyes (not around) before I went to bed. The first morning when I woke up I was shocked by how smooth my undereye felt. It's still not perfect but it's made a huge difference. But now I'm so dry after using that mask that I'm worried my skin will never recover. I need my old moisturizers but they fed the Demodex so I'm off those for the time being.

I don't blame you for not watching the animation/video because you've done your research and have seen what those horrible things look like, You already understand. But anyone who's not sure they're real, or how they're living on us, should see it.

Have you talked to your doctor about the erythromycin ointment? You'd need a prescription for it.

I wish you the best and am happy I'm not alone, but sorry so many others are also suffering. I wonder if anyone who's been 'cured' and relieved their nightmare is over has stopped coming to this site and no longer sharing what worked. I'm also on the Facebook Demodex for Humans support group and there are 104 people on it and their stories are just as unnerving, but helpful with what they're doing.

Let's hang in there!

My opthamologist actually said I don't have mites when I mentioned to him a few months ago.... unreal. I have all the symptoms and have been suffering with this and complaining to him for ages about burning, dry eyes. I've used HypoChlor with hypocholorus acid he suggested for few years but obviously it's not enough . Like you or another person said, doctors seem to shy away from this ... the two dermatologists I saw were the same - almost indifferent . Very odd. I couldn't find the video of mites on the website you referred to, only the comical one. Will have to look again .I want to find out as much as I can about their habits. Notes I made -- life cycle is 15-18 days. Come out at night from eyelids to mate and lay eggs. What I want to know is where they lay eggs, where do the larvae stay to hatch. I think the larvae are visible but not sure. Demodex folliculorum are ones who live in eyelashes or small hair follicles and brevis in oil glands so I assume the DB are ones who are on in other parts of body.

Question: how do you keep the erythromycin from getting into your eyes, or does it matter if it does?
Do you know why you needed to use the Xdemvy ... since it's only recently approved by FDA and that pricey?
I hope you don't mind all my questions. I always ask a lot of questions, my family find it annoying.

I don't know where you live and whether you do or don't have a lot of options for ophthalmologists, but I recommend changing doctors. Immediately. You shouldn't have to suffer because your doctor doesn't understand the issue. So many stupid doctors out there!!

You're right about how they come out at night to mate and lay eggs. D. Brevis are what has clogged up my Meibomian gland (and probably yours, too). They're also found on the neck and chest. From a 2014 article I just found in the NCBI titled - Human Demodex Mite: The Versatile Mite of Dermatological Importance - I saw this:
"Female Demodex are somewhat shorter and rounder than males. Both male and female Demodex mites have a genital opening and fertilization is internal. Mating takes place in the follicle opening and eggs are laid inside the hair follicles or sebaceous glands. The six-legged larvae hatch after 3-4 days, and the larvae develop into adults in about 7 days. It has a 14-day life cycle[6] [Figure 2]. The total lifespan of a Demodex mite is several weeks. The dead mites decompose inside the hair follicles or sebaceous glands." Lovely.

It's a really good article, despite it being 10 years old. One of the things they say is:
"Pathogenesis of demodicosis and immune response to mite invasion are poorly understood.[31,32] Many views have been put forth..." That's an understatement.

I needed Xdemvy because I had (have?) a "Demodex infestation" and this is what has been shown to kill them after six weeks. I rescheduled my cataract surgery three times because of the dry-eye because it could impact the measurements for the new lenses. I wasn't told about the infestation the surgeon sent me to the dry-eye specialist I had been seeing before changing practices. Once I learned about the mites I cancelled again and rescheduled for 4/2.

Do you get any crusting around your eyes or eyelashes? I did; they're called collarettes and is one of the ways it's diagnosed.

Did you order the tiny brush? I hated it at first but now I use it twice a day dry and wet (only one eye gets it dry because the brush gets wet when I rinse it before using it on the other eye -don't want any transference!). I got an email from CVS today reminding me it's time for a refill (I thought they would be dead!!), so I went online to my account to see how much it would be and they say it's around $750. I plan to call to see why it was so much more last month. (I might have an out-of-pocket to meet first). Tarsus is supposed to have a program for getting it for less, but I haven't found it yet. And time was running out with the 4/2 surgery looming so I paid it.

The video from Tarsus, the Xdemvy pharmaceutical company, is on their website:
tarsusrx.com/demodex-blepharitis/ (this Mayo support site doesn't allow URL's), but type that in with https:// in front of it and scroll down to the video.

For the erythromycin, it does get in my eyes but it's not a problem since I do it while I'm already in bed and won't be bumping into anything. It doesn't sting at all. Two doctors who prescribed it didn't tell me how to put it in, but I figured it out once I knew what the problem is. Here's what I do:

I put a wad on my finger and rub it over my entire eyelid up to my eyebrow (where I put Vaseline); then I get another wad, pull down my lower lid and put it there before getting more and rubbing that onto the lower lid and then the upper lid (with more), then I get more and put it INTO the inside and outside of lashes at the bottom margins. It's a tiny tube and I have multiple refills so I slather it on. I make sure I'm not doing anything else and then go to sleep. Oh, I try to change fingers for each eye or wipe my finger clean. In the morning I have those round cotton pads and Micellar water next to the bed, and before I'm out of bed wipe each eye several times with a new pad for each wipe. Then I put my drops in, do the Wordle (compete against my husband), watch the Today Show, get up and change my pillow cases.

I'm hoping this is the only time I'll use it, but if I need it again I'm hoping it'll be covered by Medicare or cost just $50 (still a lot, but it's not $997!). But that's what I read could be for 2025.

Where do you live?

I don't know where you live and whether you do or don't have a lot of options for ophthalmologists, but I recommend changing doctors. Immediately. You shouldn't have to suffer because your doctor doesn't understand the issue. So many stupid doctors out there!!

You're right about how they come out at night to mate and lay eggs. D. Brevis are what has clogged up my Meibomian gland (and probably yours, too). They're also found on the neck and chest. From a 2014 article I just found in the NCBI titled - Human Demodex Mite: The Versatile Mite of Dermatological Importance - I saw this:
"Female Demodex are somewhat shorter and rounder than males. Both male and female Demodex mites have a genital opening and fertilization is internal. Mating takes place in the follicle opening and eggs are laid inside the hair follicles or sebaceous glands. The six-legged larvae hatch after 3-4 days, and the larvae develop into adults in about 7 days. It has a 14-day life cycle[6] [Figure 2]. The total lifespan of a Demodex mite is several weeks. The dead mites decompose inside the hair follicles or sebaceous glands." Lovely.

It's a really good article, despite it being 10 years old. One of the things they say is:
"Pathogenesis of demodicosis and immune response to mite invasion are poorly understood.[31,32] Many views have been put forth..." That's an understatement.

I needed Xdemvy because I had (have?) a "Demodex infestation" and this is what has been shown to kill them after six weeks. I rescheduled my cataract surgery three times because of the dry-eye because it could impact the measurements for the new lenses. I wasn't told about the infestation the surgeon sent me to the dry-eye specialist I had been seeing before changing practices. Once I learned about the mites I cancelled again and rescheduled for 4/2.

Do you get any crusting around your eyes or eyelashes? I did; they're called collarettes and is one of the ways it's diagnosed.

Did you order the tiny brush? I hated it at first but now I use it twice a day dry and wet (only one eye gets it dry because the brush gets wet when I rinse it before using it on the other eye -don't want any transference!). I got an email from CVS today reminding me it's time for a refill (I thought they would be dead!!), so I went online to my account to see how much it would be and they say it's around $750. I plan to call to see why it was so much more last month. (I might have an out-of-pocket to meet first). Tarsus is supposed to have a program for getting it for less, but I haven't found it yet. And time was running out with the 4/2 surgery looming so I paid it.

The video from Tarsus, the Xdemvy pharmaceutical company, is on their website:
tarsusrx.com/demodex-blepharitis/ (this Mayo support site doesn't allow URL's), but type that in with https:// in front of it and scroll down to the video.

For the erythromycin, it does get in my eyes but it's not a problem since I do it while I'm already in bed and won't be bumping into anything. It doesn't sting at all. Two doctors who prescribed it didn't tell me how to put it in, but I figured it out once I knew what the problem is. Here's what I do:

I put a wad on my finger and rub it over my entire eyelid up to my eyebrow (where I put Vaseline); then I get another wad, pull down my lower lid and put it there before getting more and rubbing that onto the lower lid and then the upper lid (with more), then I get more and put it INTO the inside and outside of lashes at the bottom margins. It's a tiny tube and I have multiple refills so I slather it on. I make sure I'm not doing anything else and then go to sleep. Oh, I try to change fingers for each eye or wipe my finger clean. In the morning I have those round cotton pads and Micellar water next to the bed, and before I'm out of bed wipe each eye several times with a new pad for each wipe. Then I put my drops in, do the Wordle (compete against my husband), watch the Today Show, get up and change my pillow cases.

I'm hoping this is the only time I'll use it, but if I need it again I'm hoping it'll be covered by Medicare or cost just $50 (still a lot, but it's not $997!). But that's what I read could be for 2025.

Where do you live?

@gottab When I looked up Grover's Disease and demodex mites, there are articles that point to the fact that the two are probably related. And that is why you seem to find what you did, nothing specific to the mites, but connected to Grover's disease. Does this make sense to you?

While I do not have issues with either condition, I am nonetheless curious to hear from you what your experience is, and how you are handling it all. Tell me all about it!
Ginger

I live in southern CA, San Fernando Valley, roughly 20-25 miles outside of LA. I really like my opthalmologist, has treated me for years, so doubtful I'd change . (I saw the dermatologist yesterday who did a Mohs surgery last month, told him I was treating for the mite overgrowth, and he looked astonished. I think they are just out of touch ....) Since Covid, getting appointment with any doctor = three - four times longer wait. Some of them look exhausted. I wonder if this is a forever thing now. 0000 people vs 0 doctors. I read that same article and found it depressing that they have several week life cycle. I'm not happy about all this shampooing of hair - my already thin, fine hair is getting finer and thinner. Just dandy. I will answer more questions later. I've been up since 3:26 a.m. and am getting very spacey. See if you got that other "private message" test - it wouldn't let me send one to myself..