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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I almost forgot, lavender oil also helps (has to be real, essential lavender oil not like fake lavender smelling something or other), maybe less effective than TTO but works nonetheless (and is a bit more relaxing of a smell than tea tree imo)… I have some lotions with lavender oil in em, like this dermalogica nighttime face gel and bbw rose+lavender ‘sleep’ body lotion, for example. I find them quite helpful and less medicinal feeling.

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@rkew38

(I should probably mention tho that my doggo is pink skinned with short white hair so she’s got extra sensitive skin, and her vet gives me the instructions of what to do bc she is who confirmed that what I thought was happening was actually what was happening… I don’t imagine most dogs have the same susceptibility, she just has some stuff that unfortunately makes her more susceptible). And, something I do suggest also is having your bloods done and checking for any vitamin deficiency and taking supplements. Shampoo and body soaps with sulfur/selenium sulfide/tea tree. Body lotion with salicylic acid/urea. Exfoliation and non greasy lotions so that way you’re ridding yourself of dead skin as best as possible. And, though it may seem weird, a strip of tape does help. And, the lint rollers help ease my mind so maybe they can offer the same assistance to others. My hands clear up pretty fast with daily application of lotion that I drop a couple drops of 100% tea tree oil over the blob of lotion and mix it together over my hands as I rub it in… they cause me eczema like spots that aren’t so itchy, but can be a bit irritated at times, mostly they’re just unsightly and affect my self confidence, as does the whole demodex issue, in general. I know that some people are sensitive to TTO if it’s not better diluted but if that’s not you then I do recommend it. For me, the places that are most bothersome (bc of the demodex) are those that I can feel the issue which is like places from the chin/neck up, the inside of my hands and the soles of my feet. And, I do feel like the higher my anxiety, the more aware of the sensation I am… that’s not to say anxiety/stress is the cause of it, but it definitely does make it worse. And, I also have noticed this because when I’ve taken anti-anxiety meds to help me sleep and/or calm, the sensation is significantly less.

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I've read numerous times that stress is a contributor to this awful problem. I think it must be;
lately other problems have added to my stress and rashes have definitely increased. What brands of lotions do you use with ingredients you mention? Salicylic acid and urea sounds interesting combination , must be strong ., My skin is very dry but moisturizers seem to immediately mean more itchy bumps. So a real catch 22 problem. . In early days I used a sulfur/selenium product that was a prescription. I've begun to use exfoliates and also think it helps. I'm aware over last few months, some areas on soles of feet are itchy at times and strangely pink looking but no visible bumps or rashes. I wondered if there was a connection but thought it a very odd place for demodex .

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@rkew38

I almost forgot, lavender oil also helps (has to be real, essential lavender oil not like fake lavender smelling something or other), maybe less effective than TTO but works nonetheless (and is a bit more relaxing of a smell than tea tree imo)… I have some lotions with lavender oil in em, like this dermalogica nighttime face gel and bbw rose+lavender ‘sleep’ body lotion, for example. I find them quite helpful and less medicinal feeling.

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I would like to get the lavender oil or body lotion. Is BBW the brand? Do you recall where you found these products. I have not bought any essential oils for years and years. Our local Sprouts stores sell some , probably Amazon also.

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@alju

I would like to get the lavender oil or body lotion. Is BBW the brand? Do you recall where you found these products. I have not bought any essential oils for years and years. Our local Sprouts stores sell some , probably Amazon also.

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I mix 1 % of permetherin mixed with a good lotion. You can get permetherin at any feed store. I use this about every month when I break out. takes just a dab for my face. On my dog who had an awful hot spot Carmex was the only thing that worked. (After spending hundreds on vet subscriptions) her hair finally grew back. But for the demodex mites I get them every monthly cycle bad. They are gone over night with the lotion mix.

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I work in a building with mold. Over the years, I have had random symptoms that come and go with my time in the building. The last few years, I developed a skin rash/acne that at first would improve over the weekend and actually completely go away over the summer (I’m a teacher). This year, my school building “mitigated” for mold 1 week before school started. Lo and behold, after having clear skin, in 2 weeks I ended up with full blown acne that I knew was not acne but parasitic. I had the same frustrating experience! And like you, never had acne or any issues before this. The mold triggered the oil / pore blockage which caused the infestation. Yet, no doctor knew this and I wasted so much time and money on the wrong things. I have been taking Accutane (at 45!) for 1 week and pray it helps. I am using FMLA time and terrified to go back in the building. I just need one professional to care enough to identify and solve my problem and for the school to provide clean air!

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@matikowskic

I work in a building with mold. Over the years, I have had random symptoms that come and go with my time in the building. The last few years, I developed a skin rash/acne that at first would improve over the weekend and actually completely go away over the summer (I’m a teacher). This year, my school building “mitigated” for mold 1 week before school started. Lo and behold, after having clear skin, in 2 weeks I ended up with full blown acne that I knew was not acne but parasitic. I had the same frustrating experience! And like you, never had acne or any issues before this. The mold triggered the oil / pore blockage which caused the infestation. Yet, no doctor knew this and I wasted so much time and money on the wrong things. I have been taking Accutane (at 45!) for 1 week and pray it helps. I am using FMLA time and terrified to go back in the building. I just need one professional to care enough to identify and solve my problem and for the school to provide clean air!

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Noveha Tea Tree products. My dermatologist recommended them. Order from Amazon.

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@mblanch56

Noveha Tea Tree products. My dermatologist recommended them. Order from Amazon.

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Do they work? I bought tea tree wash from Amazon and it didn’t help.

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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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Yes due to my mold allergy, while working in a school building with mold, the constant stress on my immune system and exposure to the toxin. triggers an assortment of uncomfortable and unsightly symptoms that are not often understood by many doctors. The school board pretends the mold problem is fixed. My body knows differently based on the symptoms happening as soon as I spend time in the building and then cease when I leave. What is scary, is that after 20 plus years, the symptoms are becoming worse and take longer to go away. The most recent issue being the Demodex ordeal. It has been painful physically emotionally and socially. It impacts my family as well. They don’t understand why doctors and school officials don’t seem to care.

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@medical1question
I’ve never had acne. For the first time in my life 4 years ago when I got Covid my face broke out so weird in almost blister like acne. I cannot even describe it. Since then I have been on sulfamethazine off and on. Keep in mind I’m already immunocompromised. It was doing kind of okay with the occasional break out until this April. My body was so itchy and I saw a new derm an NP followed their orders, it honestly made things a million times worse. I’ve seen an allergist since as well and it’s been confirmed that I have a dust mite allergy and Thimerosal. This made me go even more crazy because I clean like crazy. I would really like to get the carpets removed in our bedrooms. I vacuum at least once a day excluding the roomba. I wash the sheets weekly. I started doing it every other day-i stopped since then. I clean the ceiling fans try my best to do the blinds, I disinfect, I clean the bathrooms, kitchen daily. I already barely have enough strength to shower most days but I do this. I’ve also seen 2 eye docs and been told I need dry eye treatment but the insides of my eye lids the lymph nodes or something looks okay. I’ve been doing everything they tell me to do but what I first thought was burning under my eyes or described as my sister who is an RN told me it’s rosacea and then the eczema on the eye lids gets crazy. I’ve tried so many diff eye drops they have recommended. Now the thing you described on your eyebrows is happening to me-half of my left eyebrow is gone. I want to cry daily. As if I wasn’t dealing with enough health crap. I messaged my endo from Mayo and he told me to self-request an internal med appt and asked if I had a biopsy. A PCP has to refer you to derm there and mine transferred to urgent care and she was amazing and it’s been hell finding one that cares or actually examines you. I have an internal med doc here that works PT and then at my other clinic I’ll be seeing the other one in May that will be my PCP hopefully. I’ve asked for a referral from this one so I hope I get one but I just went to urgent care for influenza A and I hate going to urgent care or the ED I usually just see my doc-and the provider there told me it was impetigo and last weekend unfortunately I also went to urgent care because my dog gave me a 1pm corneal abrasion. Thankfully it wasn’t on the eye that always has the most severe symptoms. My eyes get so dry inside the eye lids and then the next morning it’s like the tear ducts were blocked but the outside of the eyelids has eczema or whatever but this eyebrow problem is like no other it is insane. Idk how this will ever be fixed if ever. It is so embarrassing. I cannot wear makeup or anything. If you can at all message me on here please do so. I’m not sure how it works. Thank you.

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@beverlyp1

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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I really am desperate for help and I’m nowhere near TN ugh.

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