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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Hi @medical1question and welcome. I can imagine that ongoing symptoms with no relief is quite frustrating.

I am inviting @gottab, @ainsleigh, and @markopolo who have mentioned Demodex here on Connect.

- Human Demodex Mite: The Versatile Mite of Dermatological Importance https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3884930/#!po=0.877193

Are you immunocompromised in any other way?

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@amandaa

Hi @medical1question and welcome. I can imagine that ongoing symptoms with no relief is quite frustrating.

I am inviting @gottab, @ainsleigh, and @markopolo who have mentioned Demodex here on Connect.

- Human Demodex Mite: The Versatile Mite of Dermatological Importance https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3884930/#!po=0.877193

Are you immunocompromised in any other way?

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Thank you, Amanda. I’ve read this abstract, and it’s a good one. No, I’m not immunocom-
promised to my knowledge. I’ve had two ANA that have come back negative for Lupus; however, my daughter was diagnosed with Lupus about a year ago.

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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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Meant to say that I hope this info helps; I understand your concern and frustration.

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Hello. I’ve suffered with this as well. I constantly went to dermatologists just for them to say it’s acne. My case is different. I would have a patch on my face filled with demodex. Being tired of not getting any solution, I had to research myself. Once I realized what it could be, I started to look for treatments. I finally found a solution. METRIN %5 Permethrin Cream 30g/1oz Treatment of Scabies. I would would put a thin layer on my whole face and a slightly thick layer on the specific areas on my face where I had an infestation. I would do this every morning and night after my skin care routine. I knew it worked when my skin would be full of white like mucous material you described. I’m assuming they were the dead ones that were on my face. It takes a few weeks to see your face clear up but it’s worth it. If it wasn’t for this cream, I would be confined into my home from shame.

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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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@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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@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

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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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@gottab, I modified the title of this discussion in the Skin Health support group so that there is now a space dedicated to the topic of Demodex or face mites and demodicosis.

For anyone looking for more information:
- Demodex (Face Mites) https://my.clevelandclinic.org/health/diseases/22775-demodex-face-mites

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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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Ginger, thank you for adding this subject to the Skin Health site. As requested, my experience with demodex mites is that doctors do not seem to know a lot about them and it is difficult for the doctors to successfully diagnose mites. I do have all the symptoms of these pesky parasites: activity around my eyelashes (to the point of blurred vision when active), itchy nose with "movement", ears itching, scalp movement with itchiness and eruptions on my body - at different times, different locations. For instance, I noticed above my eyelashes on my eyelid an eruption and area was red. Tended to the eruption and it is now gone but the redness remains. No rashes that I can determine, however, there is a lot of itching and former eruptions leave a subtle red mark. After three years of dealing with this, my doctor has prescribed ivermectin for two weeks while using metronidazole cream as needed for the itching. By 6 PM (in Jacksonville) the mites are having a "party" on my skin and in my eyelashes to the point that I feel hot all over and begin sweating. Have begun using an icepack on my face to get relief - which helps. This has affected my quality of life and social life being almost non-existent. Am praying the ivermectin will work.

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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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