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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.

Interested in more discussions like this? Go to the Skin Health Support Group.

cmcg | @cmcg | Apr 27 10:23am
In reply to @gottab "Every time I search this entire site for info on demodex mite help, I get grover's..." + (show)
@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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So, just for my trouble shooting, you clicked on the link and it asked for mtg number and code? And they didn’t work?

Sorry this didn’t work. I will stay on until 11:30 in case anyone succeeds.

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1 reply
nancyjg | @nancyjg | Apr 27 10:29am
In reply to @cmcg "So, just for my trouble shooting, you clicked on the link and it asked for mtg..." + (show)
@cmcg

So, just for my trouble shooting, you clicked on the link and it asked for mtg number and code? And they didn’t work?

Sorry this didn’t work. I will stay on until 11:30 in case anyone succeeds.

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I'm in and it says they've let you know I'm here. You have to admit me.

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cmcg | @cmcg | Apr 27 12:58pm
In reply to @gottab "Every time I search this entire site for info on demodex mite help, I get grover's..." + (show)
@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?

Jump to this post

Hi all...

We had a very good discussion today on Zoom. If you would like to join us in two weeks on May 11 at 11AM (ET), please see below Zoom invite. It is followed by a second Zoom invite at 12N as the free Zoom calls last only 40 minutes and you need a delay before a second call. The second call is only if we need it.

Invitation to a scheduled Zoom meeting.

Topic: Mayo Group
Time: May 11, 2024 11:00 AM Eastern Time (US and Canada)

Join Zoom Meeting
https://us04web.zoom.us/j/79639937273?pwd=dTy2YNYUqa5bc11kXvbnXyTDqDnnmN.1
Meeting ID: 796 3993 7273
Passcode: n0E1Vq

Second Zoom Call:

Topic: Mayo Group
Time: May 11, 2024 12:00 PM Eastern Time (US and Canada)

Join Zoom Meeting
https://us04web.zoom.us/j/72368259411?pwd=aSmhGb98UAxuvo0xHMLn1ez1alOmO5.1
Meeting ID: 723 6825 9411
Passcode: PLWKU1

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alju | @alju | Apr 28 10:21am
In reply to @scouse "I think it was some sort of garden bug. I couldn’t shift it and the dermatologists..." + (show)
@scouse

I think it was some sort of garden bug. I couldn’t shift it and the dermatologists had no idea what it was. It started a few years ago when I got bit by mosquitoes on holiday. They left what looked like bumps on my arms. They didn’t really bother me at first but looking back I think they had burrowed into my skin. A few years later I was really itchy and had a crawling sensation on my skin. Anyway, I know the answer to get rid of them now. It is Hydrex which is Chlorahexadine - basically Hibiscrub which is a surgical scrub. I’ve been using Hydrex and all of these sensations have gone and the bumps are disappearing on my arms. I discovered this after researching intensively on the Internet. The scientists recommended Chlorehexadine for unknown mites on your skin. Also buy Dermol cream on the Internet to use once or twice during the day. It’s a really good cream. If you have bumps on your arms mix ground cinnamon powder, garlic powder and olive oil together and exfoliate the bumps. It was also a great way to get rid of these bumps. Good luck. It’s a nightmare but I know have the answer and relief. X

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I will look for the Hibiscrub. Were you on holiday in a tropical area when you got the bites? There are way too many biting insects in the world to torture us . I've had a zillion mosquito bites in my lifetime; if there's one within a mile , it will find me. My bites usually go away after about 4 days of intense itching.

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1 reply
alju | @alju | Apr 28 11:10am
In reply to @cmcg "Hi…oh dear, sorry to hear this. I have had those red bumps on my chest and..." + (show)
@cmcg

Hi…oh dear, sorry to hear this. I have had those red bumps on my chest and back of neck and might have one or two of them on my back. I currently have one on my chest so out of frustration, I dabbed it this AM w 100% TTO. I showed this one to my dermatologist earlier in the week and she didn’t know what to make of it. When I first had the demos ( or little fekers as I call them!), I am pretty sure I had them all over. As I have learned more, my sense is that Inhad both foliculorum and brevis. Interestingly, when I took oral ivermectin early on in my fight, it seemed that it wipes out the brevis… as my total body symptoms seemed to disappear. And subsequently, my crawling, itching and stinging symptoms are on my scalp, face, eyes, nose and ears. I am feeling optimistic again w adding Vaseline to my night time ritual of washing with the TTO shampoo, applying the TTO leave in condition/body lotion ( all over above areas except scalp) and then covering all those areas w Vaseline. I sleep on a towel covered pillow case so that I don’t ruin my pillow cases. I find the scalp tricky…. I do the shampoo, use the TTO hair conditioner, rinse that out and then apply the leave in conditioner daily. But find by the end of the day, I am feeling the symptoms on my scalp, so I apply the TTO scalp treatment from OGX ( photo below). Again, nothing making them go away completely… but feeling more under control and manageable. I haven’t increased the concentration of TTO in this product yet, but will when I buy a new bottle. Hope this helps!

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I wonder if they mutate and become resistant over time. Horrible thought.
I've used the wrong lotion on my legs, out of habit without thinking, several days recently and the mites just loved it. Can't believe I did that . I recall you found an oil free lotion you liked, but don't remember if you identified the brand. ?? Is the vaseline supposed to trap them , they get stuck in it and suffocate.

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nj65 | @nj65 | Apr 28 11:28am

I've been to four dermatologist and 3 physicians. Not one did a biopsy. I'm trying to get an appointment with infectious disease specialist. I went down the rabbit hole on the internet. I have the same symptoms as you and then some. Mine has spread to my chest and back. I'm on oral Ivermectin it is helping. I now use straight tea tree oil on my scalp. The tea tree oil had these jelly like things come out of my scalp. I go back to the dermatologist this week. Best of luck combating these mites.

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1 reply
scouse | @scouse | Apr 28 3:29pm
In reply to @alju "I will look for the Hibiscrub. Were you on holiday in a tropical area when you..." + (show)
@alju

I will look for the Hibiscrub. Were you on holiday in a tropical area when you got the bites? There are way too many biting insects in the world to torture us . I've had a zillion mosquito bites in my lifetime; if there's one within a mile , it will find me. My bites usually go away after about 4 days of intense itching.

Jump to this post

I went to Malaga by a lake. It was a friend’s apartment he rented for a year. He didn’t tell me it had no air conditioning. The mosquito bites were everywhere on our bodies after a week. It was so hot & we had to leave the windows open at night and sit in the dark to stop the mosquitoes coming in. We could not wait to go home!

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1 reply
alju | @alju | Apr 30 11:38am
In reply to @scouse "I went to Malaga by a lake. It was a friend’s apartment he rented for a..." + (show)
@scouse

I went to Malaga by a lake. It was a friend’s apartment he rented for a year. He didn’t tell me it had no air conditioning. The mosquito bites were everywhere on our bodies after a week. It was so hot & we had to leave the windows open at night and sit in the dark to stop the mosquitoes coming in. We could not wait to go home!

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Something like that can ruin any vacation; I have memories of being bitten by bed bugs, being miserable for days in Torreomolinos years ago . Sadly, that is my clearest memory of our visit there.

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nancyjg | @nancyjg | May 1 8:32pm
In reply to @tis4trouble "Yes!!!!! It's taken my will to live. I'm dismissed and put off as crazy. I've been..." + (show)
@tis4trouble

Yes!!!!! It's taken my will to live. I'm dismissed and put off as crazy. I've been battling this and don't know how much longer I can. I cannot get any help. I've shown pictures and you can tell by my face. It's as if they are just too afraid to admit what it is or they don't know and don't bother to get me help. I'm suffering and trying to hang on.

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You are not alone!! I believe you, and others on this group do, too.

What are you doing to kill them?

There's another support group that has over 100 people whereas this one has only 16. And there are multiple Facebook support groups (avoid the Ungex one) and you can see that there are many, many people who are suffering ad you are.

Hang in there!!!@

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1 reply
tis4trouble | @tis4trouble | May 1 9:23pm
In reply to @nancyjg "You are not alone!! I believe you, and others on this group do, too. What are..." + (show)
@nancyjg

You are not alone!! I believe you, and others on this group do, too.

What are you doing to kill them?

There's another support group that has over 100 people whereas this one has only 16. And there are multiple Facebook support groups (avoid the Ungex one) and you can see that there are many, many people who are suffering ad you are.

Hang in there!!!@

Jump to this post

Thank you. I've tried the Ivermectin, but only the 2 prescriptions of it. Dr's don't understand it at all. I'm waiting on the biopsy still to come back. I've also tried the Ivermectin cream, metronidazole oral and cream, Doxycycline, dog meds, horse meds, you name it! I've also been battling some other kind of parasites or worms in my vaginal area and anal area. The stool sample test came back negative, however I know better. I have felt periodically and seen through taking pics. It's horrible and even with the symptoms and showing pics of my stuff down there, Dr's still ignore and refuse to see what's there.

The result of stool test I can't explain especially when I saw dead stuff in the samples. The conditions itself will drive you crazy and then trying to prove it to get treatment is hell.

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