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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@cmcg

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).

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Congratulations on not thinking about it 24/7. I'm getting to that point, too, but am not there yet.

I finished my 6-week Xdemvy eye drops treatment on Monday 3/18 and saw my dry-eye specialist that morning. She said I'm clear and nothing was on my margins. She's prescribed Tyrvaya, a nasal spray that's supposed to be good for dry eye, and Miebo for Meibomian Gland Dysfunction (MGD). They're also very, very expensive so I'm thinking about it. They're OTC in Europe and I'm going to France at the beginning of May and will look at what the prices are there.

Despite being cleared, I'm still changing pillowcases every day and changing the sheets every 5-6 days. I think the mites are primarily in my eyes and I'm not feeling much in my hair*, but I like your routine and will start that next. For my eyes, I really, really like the tiny brush from We Love Eyes. I really hated it at first but now that I use it dry in front of a magnifying mirror it really works. Once it's wet it's more difficult to get into the base of the lashes, so as of tomorrow I'll have four brushes (they're expensive but it's too important, so I splurged). I find that taking a selfie of my eyes and blowing before I use the brushes is really helpful so I can see where any debris could be and then attack that spot. I use them wet, too, but think dry is the better way to go.

Thanks for your info! Good luck everyone!!

*I just scratched my head. Any time I feel an itch I wonder...

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@nancyjg

Congratulations on not thinking about it 24/7. I'm getting to that point, too, but am not there yet.

I finished my 6-week Xdemvy eye drops treatment on Monday 3/18 and saw my dry-eye specialist that morning. She said I'm clear and nothing was on my margins. She's prescribed Tyrvaya, a nasal spray that's supposed to be good for dry eye, and Miebo for Meibomian Gland Dysfunction (MGD). They're also very, very expensive so I'm thinking about it. They're OTC in Europe and I'm going to France at the beginning of May and will look at what the prices are there.

Despite being cleared, I'm still changing pillowcases every day and changing the sheets every 5-6 days. I think the mites are primarily in my eyes and I'm not feeling much in my hair*, but I like your routine and will start that next. For my eyes, I really, really like the tiny brush from We Love Eyes. I really hated it at first but now that I use it dry in front of a magnifying mirror it really works. Once it's wet it's more difficult to get into the base of the lashes, so as of tomorrow I'll have four brushes (they're expensive but it's too important, so I splurged). I find that taking a selfie of my eyes and blowing before I use the brushes is really helpful so I can see where any debris could be and then attack that spot. I use them wet, too, but think dry is the better way to go.

Thanks for your info! Good luck everyone!!

*I just scratched my head. Any time I feel an itch I wonder...

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Great news from your eye doctor! I am holding off on another Xdemvy Rx as I am finding that the TTO lotion seems to be doing the trick.🤞
Did you ever think you would be analyzing every itch on your body? Same here…. As these topicals dry out my skin, I am getting some random itchiness which I am pretty sure is dry skin. I would love to hear if anyone has gone back to regular skin lotion. I just worry that it might invite the Demodex back. I am thinking that the TTO products create a hostile environment for the Demodex and that they don’t replicate and eventually die off.

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@cmcg

Great news from your eye doctor! I am holding off on another Xdemvy Rx as I am finding that the TTO lotion seems to be doing the trick.🤞
Did you ever think you would be analyzing every itch on your body? Same here…. As these topicals dry out my skin, I am getting some random itchiness which I am pretty sure is dry skin. I would love to hear if anyone has gone back to regular skin lotion. I just worry that it might invite the Demodex back. I am thinking that the TTO products create a hostile environment for the Demodex and that they don’t replicate and eventually die off.

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I've noticed a definite increase in itchiness, especially after adding TTO to the shampoo itself. (I hope it's only dry skin and not combative mites objecting to the TTO and pushing back. ) I think I'll try a plain shampoo tonight without any TTO and note itching results. Last night I was not happy , trying to decide if I should get out of bed and put lotion on my back. I've been using shampoo as a body wash too for past couple of weeks and definitely have drier skin. I still think about mite 24/7. Just received a bottle of Tea Tree Special; may have ordered the wrong one, as don't see lavender as ingredient and I believe yours has that. Sodium lauryl sulfate is drying to hair but is effective against mites and fungi (didn't know that) is the second ingredient listed after water .

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@nancyjg

Congratulations on not thinking about it 24/7. I'm getting to that point, too, but am not there yet.

I finished my 6-week Xdemvy eye drops treatment on Monday 3/18 and saw my dry-eye specialist that morning. She said I'm clear and nothing was on my margins. She's prescribed Tyrvaya, a nasal spray that's supposed to be good for dry eye, and Miebo for Meibomian Gland Dysfunction (MGD). They're also very, very expensive so I'm thinking about it. They're OTC in Europe and I'm going to France at the beginning of May and will look at what the prices are there.

Despite being cleared, I'm still changing pillowcases every day and changing the sheets every 5-6 days. I think the mites are primarily in my eyes and I'm not feeling much in my hair*, but I like your routine and will start that next. For my eyes, I really, really like the tiny brush from We Love Eyes. I really hated it at first but now that I use it dry in front of a magnifying mirror it really works. Once it's wet it's more difficult to get into the base of the lashes, so as of tomorrow I'll have four brushes (they're expensive but it's too important, so I splurged). I find that taking a selfie of my eyes and blowing before I use the brushes is really helpful so I can see where any debris could be and then attack that spot. I use them wet, too, but think dry is the better way to go.

Thanks for your info! Good luck everyone!!

*I just scratched my head. Any time I feel an itch I wonder...

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I have a problems trying to clean away the collarettes because that gunky stuff clings like glue to skin. I rubbed too hard with the q-tips last night and underneath my eyes was burning for a long time. The q-tip cotton itself seems very rough too. Very uncomfortable .
Warm water soaking doesn't seem to help much. I am going to try applying almond oil under my eye to see if that loosens it at all before wiping .

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@alju

I have a problems trying to clean away the collarettes because that gunky stuff clings like glue to skin. I rubbed too hard with the q-tips last night and underneath my eyes was burning for a long time. The q-tip cotton itself seems very rough too. Very uncomfortable .
Warm water soaking doesn't seem to help much. I am going to try applying almond oil under my eye to see if that loosens it at all before wiping .

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You may want to think about those tiny brushes from We Love Eyes, or doing it again with the Q-tip while it's dry. I can get into the lashes more easily when dry and then do it again with the TTO stuff.

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@alju

I've noticed a definite increase in itchiness, especially after adding TTO to the shampoo itself. (I hope it's only dry skin and not combative mites objecting to the TTO and pushing back. ) I think I'll try a plain shampoo tonight without any TTO and note itching results. Last night I was not happy , trying to decide if I should get out of bed and put lotion on my back. I've been using shampoo as a body wash too for past couple of weeks and definitely have drier skin. I still think about mite 24/7. Just received a bottle of Tea Tree Special; may have ordered the wrong one, as don't see lavender as ingredient and I believe yours has that. Sodium lauryl sulfate is drying to hair but is effective against mites and fungi (didn't know that) is the second ingredient listed after water .

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I never had the itching in my eyes until I started the Xdemvy, which leads me to believe it's when they're dying. At least I hope so! (I'm scratching my neck and hair as I write this. Oy!)

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@seniormed

We all have demodex mites in our sebaceous glands.
It may not be possible to eliminate all of them.
In most situations they are harmless commensal
residents on our skin. They rarely cause a rash
Simple everyday rosacea topicals usually diminish
any overgrowth. Selenium shampoo can help inour scalp are.
You can use normal skin care items and save money.

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Obviously you do not have a compromised immune system and have never had to deal with overgrowth of demodex mites. Your suggestions will not help the majority of us on this website. Trust me, I know firsthand.

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@gottab

Obviously you do not have a compromised immune system and have never had to deal with overgrowth of demodex mites. Your suggestions will not help the majority of us on this website. Trust me, I know firsthand.

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Have you taken or considered taking oral Ivermectin ? I think my mite problem may exceed the topical remedies, but hopefully I'm wrong. Taking it sounds pretty scary. I don't recall seeing if anyone has posted about going that route.
I am a "possible suspect" for a compronised immune system based on what was diagnosed, by two very young doctors. Not impressed by either one. I will reject that opinion until I see a "specialist" who confirms it. Maybe just wishful thinking.

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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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Demodex are not harmful. Once you have suppressed any excess overgrowth
on the eyelashes there is no need for further treatment.
If you over treat the irritation can be worse than the original symptoms.
Best to let your sensitive skin rest and heal.
Most of us have Demodex in our oily sebaceous glands living with us all of our lives. No need to try and kill them all. They are not found on our lower body areas. It may take time for you to rest and heal your skin so that you can tell that the problem is cleared. Much easier to use a sulfur or metronidazole gel applied to the skin if they recur. No need to expose yourself to oral Ivermectin or treat your body.

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@seniormed

Demodex are not harmful. Once you have suppressed any excess overgrowth
on the eyelashes there is no need for further treatment.
If you over treat the irritation can be worse than the original symptoms.
Best to let your sensitive skin rest and heal.
Most of us have Demodex in our oily sebaceous glands living with us all of our lives. No need to try and kill them all. They are not found on our lower body areas. It may take time for you to rest and heal your skin so that you can tell that the problem is cleared. Much easier to use a sulfur or metronidazole gel applied to the skin if they recur. No need to expose yourself to oral Ivermectin or treat your body.

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To say that Demodex are not harmful tells me you aren't living with the problems they cause. Yes, my dermatologist says that Demodex are part of our human flora and has mixed feelings about eradicating them since we do need them. However I am on this forum - and assume others are, too - because we are truly suffering from infestations in our eyes, hair and bodies. The quality of our lives has suffered because of Demodex, so I cannot agree that they are not harmful. Before doing self treatment and then taking XDEMVY plus self treatment, my vision was impaired and I had a 24-hour headache on the side where my vision was the worst. Waking up and being able to open my eyes was a true challenge and required a lot of night-before preparation. Medical professionals (a dry-eye specialist and two other ophthalmologists) didn't tell me that a Demodex infestation was the cause of my problems. Then I questioned whether my dry eye would impact my much-needed cataract surgery and was only then told about them. I'd never heard the word DEMODEX before then. Why is that?

I don't understand why our suffering is allowed to continue while our doctors ignore the real problem - Demodex. We'd like to have a better quality of life and wish others could understand what we live with.

We get your point that our overdoing eradication can be worse, but we're desperate. Doesn't anyone see that?

We know we will always have Demodex, but it's important that medical professionals wake up, get educated, and stop pretending there's no problem.

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