Anyone else dealing with Demodex Mites? What helps?

Posted by medical1question @medical1question, Aug 10, 2022

Four years ago, with no history of any skin issues, I developed overnight red, pustules and papules on my eyebrows. Over the four years, I’ve gone to three dermatology groups known to be selected by other healthcare professionals, and have seen a total of seven practitioners. They have said it’s rosacea, seborrheic dermatitis, or actinic keratosis. I’ve been prescribed expensive new topicals, two different antibiotic courses, etc. Each visit I hear, “Well, you can try this.”

I’m an RN, and I know my body. I keep telling each dermatologist that I believe it could be an infestation or overpopulation of demodex; demodex reproduce at night on your skin (they live in hair follicles) and most evenings my eyebrows begin to itch about the time it’s getting dark. With needle-tipped tweezers, I can pull white cyndrically-shaped mucous-type material attached to a hair follicle. None of the practitioners have followed guidance from an article on the NIH website for ensuring there is a skin scraping or other method to obtain a demodex count. None has acknowledged the damaging effects on self image that abound in the literature for rosacea, with which demodex is associated. This post is in no way to disparage dermatologists in general, but I clearly don’t fit the mold of the repetitive frequently seen five minute visits to which they may be accustomed. Has anyone experienced an overpopulation of demodex? How was it diagnosed and treated? Thank you.

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@kaitymay

Hello, I’m doing my own Demodex research as I am certain I have this and am frankly sick of dealing with it. I started Dupixent back in Sept for severe dyshidrotic eczema and have found myself dealing with increased redness, papules, and scales on my face. It is extremely discouraging to be gaslit about this possibility when I bring it up to the prescribing doctor. I know that fungal issues and frankly anything that changes our immune response to those little microorganisms can definitely be contributing factor here but I am hesitant to give it up since my hands look so much better on the Dupixent. I was not even able to sleep with the itching blisters on my hands. But now my face looks awful! Defeating it seems like a full-time job. Hoping I can get some suggestions from this thread. Hopefully I can try the scabies med or ivermectin 🙁

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I would suggest the oldest and safest remedy I have used for the
past 50 years.
Most of us who have oily skin and seborrhea do have Demodex in our skin flora. Normally there are no symptoms. Overgrowth when we are immunosuppresed could cause your condition.
Years ago I was given an old fashioned compounded sulfur remedy by my dermatologist.
Most treatments for rosacea also help control demodicosis.
I suggest safest course for control is Prosacea gel ( 10% sulfur) daily
and zinc soap wash available in bar or liquid forms OTC as well.
Helps to use a shampoo like selenium sulfide or zinc phrithione
in your shower. I would only use permethrin a few day a month if that fails. Demodex lives with us.
Ivermectin is expensive.

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@seniormed

I would suggest the oldest and safest remedy I have used for the
past 50 years.
Most of us who have oily skin and seborrhea do have Demodex in our skin flora. Normally there are no symptoms. Overgrowth when we are immunosuppresed could cause your condition.
Years ago I was given an old fashioned compounded sulfur remedy by my dermatologist.
Most treatments for rosacea also help control demodicosis.
I suggest safest course for control is Prosacea gel ( 10% sulfur) daily
and zinc soap wash available in bar or liquid forms OTC as well.
Helps to use a shampoo like selenium sulfide or zinc phrithione
in your shower. I would only use permethrin a few day a month if that fails. Demodex lives with us.
Ivermectin is expensive.

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Thank you so much, I’ll try Prosacea. Right now I’m using the retinol preparation Differin at derm’s recommendation because she seems to think it’s “just acne.” But it’s not doing much. I do already have a Vanicream Z-bar that I use for my numerous back lesions along with CLN wash (could THAT also be Demodex related?)…I am afraid of using a lot of the more drying stuff on my face as I actually have REALLY dry skin; not oily at all. Which is why I’m so confused by the seeming demodex infestation. I think it must be related to the Dupixent and its effect on my immune response seeing as I do not exactly have a feast of sebum for the critters. Hoping Prosacea can help. I’m not sure what else to try at this point :-/

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Hello@medical question. I have had almost identical experience you described. I recently found a doctor who actually listened to me and I have just started with his treatment plan. He is Dr Rolando Toyos. He is located in Nashville,Tennessee but he does video conferences visits for people who are not within driving distance. Dr Toyos is an ophthalmologist. He specializes in Dry Eye and it’s various causes. He did a through history and diagnosed me as having Demodex mites from all the clinical evidence from my history and physical I have dry eye, rosacea, “eye and eyebrow dandruff “ I am on steroids s long term for Rheumatoid Arthritis. His recommendations for me was a prescription face cleanser, face wipes with hyaluronic acid, eye drops, eye gel and Ivermectin cream. He also gave me a IPL (intense pulsed light) a type of laser treatment to open my glands that were blocked in my upper and lower eyelids. My face was horrible and after just 5 days it was 70% clear! I had already had 2 rounds of Ivermectin oral tablets that I received from Posh Medical a telemedicine group of doctors. That had calmed the mites down enough that I wasn’t wild with the constant itching. Dr Toyos has several You Tube videos discussing the various treatments that he uses. So you can get a feel of what he is like before committing to an appointment. He also has written a book the Dry Eye Diet that is available from Amazon for the kindle or you can order the book from his office.. this treatment plan was not cheap. But I had been fighting these mites for a year and this was a priority for me. His contact information is on his website at teamtoyos After an agonizing year dealing with all the doctors who really had NO knowledge of Demodex mites, Dr Toyo’s was like a breath of fresh air! Sorry this is so long. I hope this information will be helpful.

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@gottab

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?

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Yes omg. Go-to Georgetown University Hospital ER tonight. Have lots of pics. Severe infestation. Can see imprints of them in apartment with no magnification. Back later.

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@gottab

Hi - Just seeing your post about demodex since I do not go on this website very often because, frankly, have not received any meaningful help regarding my demodex overgrowth. I did find a demodex group on Facebook that you may want to search for on the FB website. I have suffered with this overgrowth for three years with it getting progressively worse. One dermatologist said I should talk to someone about the anxieties I was feeling…not been back to her! Another was interested in the NIH article I showed her but let me know she believed I did not have demodex mites. All this to say, I use Cliradex and Optase wipes, Hydroclorious acid spray, cold packs on my face because they do not like cold. My eye doctor has diagnosed me with blepharitis but cannot do much for it except prescribe erythromycin eye ointment for nightly use. (It is my understanding that FDA is now reviewing eye drops for treatment of demo. mites that, if approved, will be available later this year.) Am thankful for cold weather, however, as you know, they become active at dusk no matter the season. Again, I highly suggest that you find the FB group because there are many suggestions for coping. Also, look up Natural Genesis products. Their products have been helpful also. Sorry to be so long; have been up since 3 am because of these terrible pests.

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It is spelled Natural Ginesis and their Kleen Green was very effective with skin mites.

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Due to newer flea and tick control not killing mites per Dr. Alice Jeromin who sees more mites than fleas - animals and people are becoming diseased. Omega 3’s, cut sugar and eat greens. Father - Lewy body, son MCTD, self- lupus symptoms We are 100% certain mites caused our families illness. Dementiamites.com

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@gottab

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?

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I have been to 3 different doctors and what I am saying is falling on deaf ears., I have these little mites that seem to be mostly around the back of my neck, sides of my neck, my jaw line then tend to crawl up my face. Be attracted to my eyes, sometimes my nose.
And then sporadic here and there on the rest of my body quite a few down the middle of my spine where there's fine hair. It is itchy, they bite, My skin is rough dry. It hurts it Burns. I need help. I do not know what else to do. They're tiny White almost clear. I have attached photos, Can someone just leave me in the right direction? Please

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Hi all…. So glad to have found this chat group! I have struggled with Demodex infestation for about 6 months. I started using tea tree oil which helped, then added John Paul Mitchel tea tree oil shampoo (daily shampoo and use it as body wash as well). I took two rounds of oral ivermectin and am now using topical ivermectin (once daily) and topical metronidazole (twice daily) on my face, ears, chest. I did an ivermectin scalp treatment recommended for scabies and I did see two some people recommend it for Demodex. It helped, but didn’t solve my scalp symptoms. My ophalmologist prescribed xdemvy the new eye drops specifically for Demodex blepharitis and Avenova (hypochlorite acid)for eyelid wash (both are twice daily. The xdemvy and avenova have helped significantly. The xdemvy is crazy expensive. I also pretty aggressively manage my environment ( wash sheets every other day and pillow case daily on the hot cycle). I wash my clothing frequently and vacuum frequently. Even w all of this, I still have Demodex…. but the good news is I have far fewer than I originally did. I see my Derm in two weeks and I have a feeling that I am going to learn that we have to live with this. Has anyone eliminated the demodex completely? The literature indicates that we all have them, but infestation occurs in people w autoimmune illness. I do not have autoimmune illness. I am very interested in trying the Metrin and Prosacea. And I will check out Dr. Toyos website. Hope this is helpful and I am very interested in learning more from you all!

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@gottab

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?

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You have my sympathy!! Hope by now you have found a dermatologist who understands Demodex. I found my opthalmologist to be most receptive. My dermatologist is now on board. I have had them for 8 months though I am happy to say that I am much better over the past two weeks. My sense is that I have them “under control” as they are not gone. I have been doing many things so unfortunately can’t point to one thing that alone can help. I first had two rounds of oral ivermectin. That seemed to eliminate the Demodex on my legs and torso. I know have topical Ivermectin ( applied it once to my scalp) and since then once daily facial application (ears neck shoulders included). I also apply metronidazole topical cream twice a day to face, ears, neck and shoulders. And my ophthalmologist prescribed eyelid washes twice a day w Avenova and the new eye drop medicine Xdemvy. In addition, I take daily showers and shampoo w tea tree oil shampoo ( and use the shampoo as body soap as well) and I change my sheets every day or every other day. It is exhausting…. But it is such a relief to have the Demodex under control. I take the Xdemvy for total six weeks (3 more weeks) and have talked w my dermatologist about continuing the topical ivermectin and metronidazole until symptoms resolve. I can now go a few hours w no symptoms…. I am concerned that this might be as good as it can get. And I am not autoimmune…… more research needs to be done on this! Wishing you good luck and resolution!

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@gottab

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?

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I'm writing this on February 26, 2024 and I have three more weeks of XDEMVY. I'm 74 and need cataract surgery but have delayed it until I get the Demodex under control. I've just started using 2% Salicylic Acid and it's already made a difference! Today I ordered shampoo, a facial mask, facial cream and eye scrubs from Amazon that are made by Ovante and hope they work. For the past few days I've been using We Love Eyes tea tree eye scrub and their tiny brush. I change my sheets every five days but change the pillows every day. I use 99% alcohol on my makeup brushes and use different brushes for both sides of my face. I have four mascaras and have them marked Left and Right and spray them with the alcohol a few minutes before putting them back into their tube. I spray my pressed powder blush and eye shadow with alcohol after finishing my makeup, and have two eyelash curlers, also marked L/R and spray them with the alcohol.
It may sound like I'm going overboard but I think this is what needs to be done to eradicate them.

They have caused me to have severe dry-eye, which impacts my vision and delayed my cataract surgery.

If anyone knows of anything else I should be doing, please let me know!!

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