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.

Thank you, I'll look for you on Facebook.

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@nancyjg

Wow, you've been through a lot! I read Barbaras' site every couple of weeks. It's amazing how many people are suffering, yet doctors just don't get it.

Suggestion - to cut down on the oils on your face, have you tried using salicylic acid? It's good for getting rid of sebum that the DD's love (it's not a real acid). I use Paula's Choice and find it's amazing. I don't use it often, just when I feel a need for exfoliation. Good to do it at night. Starve those little guys!

Hang in there. You're not crazy, you're just surrounded by ignorant, arrogant doctors, as the rest of us are.

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Thank you and you also. It's so frustrating and humiliating/debilitating. I just came from the Dermatologist and said the biopsy came back with some kind of dermatitis. Imagine that! Smh

Desonide/hydrocortisone cream prescribed. It's unreal. I've had test after test. Blood test. Stool sample. Colonoscopy, endoscopy. Pap smear. Dermatologists looking at my female parts and pics I took. They all are negative and Dr's think I'm seriously crazy. I believe the mites and or other parasites have
traveled to that area. I have had signs of that and taking pics to confirm. I've taken antiparisitic/worm meds otc and by prescription, but it still is present and it seems it comes out at night. So, when examined I look stoopid. I'm so mortified.

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I am enduring the same thing. Ten weeks now. And they’ve become internal! In my throat, feces daily, and genitalia. I’m out of my mind with anxiety and frustration. So far, 7 doctors including an ER doctor all insist I’m delusional, having done no diagnostic tests whatsoever.

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@tis4trouble

Thank you and you also. It's so frustrating and humiliating/debilitating. I just came from the Dermatologist and said the biopsy came back with some kind of dermatitis. Imagine that! Smh

Desonide/hydrocortisone cream prescribed. It's unreal. I've had test after test. Blood test. Stool sample. Colonoscopy, endoscopy. Pap smear. Dermatologists looking at my female parts and pics I took. They all are negative and Dr's think I'm seriously crazy. I believe the mites and or other parasites have
traveled to that area. I have had signs of that and taking pics to confirm. I've taken antiparisitic/worm meds otc and by prescription, but it still is present and it seems it comes out at night. So, when examined I look stoopid. I'm so mortified.

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I also have them in my vagina (or urethra?). Every morning I find ten or more in my underwear. I’m insane with worry and frustration. Saw a gynecologist and she didn’t believe me, said I just needed more estrogen. Help!

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We have been dealing with an overgrowth of Demodex mites for over a year and a half now. It is not me that is plaqued with it, but a family member, mid 30's, picked it up while travelling in the southern states. I have been doing the research because it is a Full Time Job for him to keep these mites from getting worse. He is off work now because it is all consuming. He has these mites on his head--this was the first place they showed up and they have now moved to his face. His head is a little better so they moved to the face. It is pretty bad. He has sores and wounds on his scalp. But the work he is doing is making it a little better. But we have noticed that approximately every three weeks he gets a new wave of mites that support the existing ones. He has seen three dermatologists and they all say that there is no such thing as an overgrowth of demodex. It is demoralizing. He is not making this up. He has the classic cylindrical dandruff on his scalp, which is clear evidence demodex is causing this issue. The doctors have not even looked at his scalp with a dermascope. The mites are too small to see but the evidence is clear. They did prescribe Ivermection both oral and cream last fall but it barely worked. He has been keeping it under control with several different treatments including:
Tea Tree Oil mixed with Macadamia Nut Oil
Far Infrared Sauna, two 25-minutes sessions per day,
Red Light Therapy (full bed) 20 minutes per day.
Diatomaceous Earth mixed with Tea Tree Oil on his head and wrapped overnight.
HydraFacials with Salicylic Acid, once per week
Salicylic Acid and Sulphur soap wash.
Bentonite clay mask mixed with Essential Oils.
Salt Bath soaks.
ACV (50/50) with water spray
Is there something that he is missing? These things are relentless and indestructible.
I look forward to reading more about this and, since I'm not a chemist, hopefully someone can tell me what the best ratio is of essential oils, such as tea tree, to a carrier oil.
Thanks folks.

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@nj65

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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How are things now? Your symptoms are very similar.

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Sorry to hear all your family member is going through! I am at my two year mark and still plagued by these critters. I feel that I have them somewhat in reasonable control… I have abandoned the thought of elimination. There has been less discussion in this group over the past few months and would just ask if people have eliminated them to please share how they did it. My routine is using Paul Mitchell (I share the brand as the various products do not indicate the % TTO) products: the TTO shampoo, TTO hair condition and TTO leave in body and hair conditioner. Over time, I have added additional 100% TTO to increase the concentration. I add 3 tsps of 100% TTO to the 10 oz bottles of the above three products. I but the products now by the jug ( Amazon) but do measure out carefully and reuse my original 10 oz bottles. I shower once a day w the above three products. And I apply the leave in conditioner/body lotion atleast going to bed at night and often once or twice during the day if I feel demodex activity. I apply the lotion literally head to toe. I also change my sheets and wash in high temperatures every 2-3 days. And for about two months now, I wear all pieces of clothing only once and then launder, again in high temps. We have all had various frustrations w physicians, especially dermatologists. My ophthalmologist has been the best…. Acknowledging they exist and prescribing XDemvy for my eyes which I have used twice. Has your family friend seen their PCP? The literature will tell you that demodex are very common in the elderly (some report indicated 100% of people over 70 have demos). Allegedly, the Demodex infestation occurs on people w an immune deficiency. A PCP could do some tests to see if your family member has an immune deficiency contributing to the demodex. Many of us don’t have known immune deficiency but still struggle w infestation. I do wonder if COVID (either illness and or vaccine) might have altered our immune systems making us vulnerable to infestation. This page can be very helpful and supportive. There is also a page on FB that has more postings than this page of late. There is also a library on the FB site of various sources used by people that they have found helpful. (FB site is “Demodex, demodicosis support”)

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@sherrillynn

We have been dealing with an overgrowth of Demodex mites for over a year and a half now. It is not me that is plaqued with it, but a family member, mid 30's, picked it up while travelling in the southern states. I have been doing the research because it is a Full Time Job for him to keep these mites from getting worse. He is off work now because it is all consuming. He has these mites on his head--this was the first place they showed up and they have now moved to his face. His head is a little better so they moved to the face. It is pretty bad. He has sores and wounds on his scalp. But the work he is doing is making it a little better. But we have noticed that approximately every three weeks he gets a new wave of mites that support the existing ones. He has seen three dermatologists and they all say that there is no such thing as an overgrowth of demodex. It is demoralizing. He is not making this up. He has the classic cylindrical dandruff on his scalp, which is clear evidence demodex is causing this issue. The doctors have not even looked at his scalp with a dermascope. The mites are too small to see but the evidence is clear. They did prescribe Ivermection both oral and cream last fall but it barely worked. He has been keeping it under control with several different treatments including:
Tea Tree Oil mixed with Macadamia Nut Oil
Far Infrared Sauna, two 25-minutes sessions per day,
Red Light Therapy (full bed) 20 minutes per day.
Diatomaceous Earth mixed with Tea Tree Oil on his head and wrapped overnight.
HydraFacials with Salicylic Acid, once per week
Salicylic Acid and Sulphur soap wash.
Bentonite clay mask mixed with Essential Oils.
Salt Bath soaks.
ACV (50/50) with water spray
Is there something that he is missing? These things are relentless and indestructible.
I look forward to reading more about this and, since I'm not a chemist, hopefully someone can tell me what the best ratio is of essential oils, such as tea tree, to a carrier oil.
Thanks folks.

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Sherillyn, @lynnecutler & @cmcg This is a very frustrating condition as all of you well know. The medical literature does not recommend a single treatment as there are a variety of mites, and as they colonize they often create secondary infections. Here is a comprehensive article that deals with the variety of conditions. Perhaps most valuable are the discussion of the treatments (including essential oils) and the links back to specific studies.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9961532/
@sherillyn I would like to say that there is such a thing as overtreatment, and this might be such a case. Many of the treatments he is using are alone very harsh, and combining them may leave his skin so fragile as to be a host for further invasion and secondary conditions -
for example the nightly tea tree oil + bentonite are VERY drying, add that to washing with Salicylic Acid & Sulphur Soap and infrared treatment seems a recipe for disaster..

We do not prescribe on Mayo Connect, so I will not give you "recipes" or ratios for essential oils, but I can tell you I rely on a couple of books when trying to figure out a natural remedy, then I test and adjust.

Many good shops/distributors carry guides and books, and you can find them on-line
Two of my favorites are: Essential Oils Pocket Reference (8th Ed) by Life Science and The Healing Power of Essential Oils by Eric Zielinski
One note - If you decide to purchase essential oils, pay attention to both potency and freshness. It is best to buy them from a company that manufactures and stands behind them, and from a source where they sell quickly. Then store in a cool, dark place to preserve potency and always dilute before using.

Be sure to test each (diluted) single oil or combination on a sensitive patch of unaffected skin for at least 24 hours before applying. Two good places to try are on the inner forearm and the back of the knee. This would apply to ANY home remedy you use - you don't want sensitivity or allergy to the treatment to make thing worse!

Have you considered finding a functional medicine doctor or wholistic practitioner near you who can help?

REPLY
@sueinmn

Sherillyn, @lynnecutler & @cmcg This is a very frustrating condition as all of you well know. The medical literature does not recommend a single treatment as there are a variety of mites, and as they colonize they often create secondary infections. Here is a comprehensive article that deals with the variety of conditions. Perhaps most valuable are the discussion of the treatments (including essential oils) and the links back to specific studies.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9961532/
@sherillyn I would like to say that there is such a thing as overtreatment, and this might be such a case. Many of the treatments he is using are alone very harsh, and combining them may leave his skin so fragile as to be a host for further invasion and secondary conditions -
for example the nightly tea tree oil + bentonite are VERY drying, add that to washing with Salicylic Acid & Sulphur Soap and infrared treatment seems a recipe for disaster..

We do not prescribe on Mayo Connect, so I will not give you "recipes" or ratios for essential oils, but I can tell you I rely on a couple of books when trying to figure out a natural remedy, then I test and adjust.

Many good shops/distributors carry guides and books, and you can find them on-line
Two of my favorites are: Essential Oils Pocket Reference (8th Ed) by Life Science and The Healing Power of Essential Oils by Eric Zielinski
One note - If you decide to purchase essential oils, pay attention to both potency and freshness. It is best to buy them from a company that manufactures and stands behind them, and from a source where they sell quickly. Then store in a cool, dark place to preserve potency and always dilute before using.

Be sure to test each (diluted) single oil or combination on a sensitive patch of unaffected skin for at least 24 hours before applying. Two good places to try are on the inner forearm and the back of the knee. This would apply to ANY home remedy you use - you don't want sensitivity or allergy to the treatment to make thing worse!

Have you considered finding a functional medicine doctor or wholistic practitioner near you who can help?

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Thank you very much Sue. I appreciate all of your comments and absolutely agree with you in all cases.
Most of the treatments he uses are not at the same time. He has tried all of them but the most success has been with continuous TTO and diatomaceous earth. He also believes that Red Light Therapy (633 nm) and sauna therapy are very beneficial. The other products and the processes he has used are not continuous and not very frequent, such as the hydrafacial.
In terms of the essential oils, I understand the need to purchase for potency and freshness, but I am not able to find a supplier that can attest to the potency and freshness. There are so many brands out there and no standards, that I have found, to ensure I am buying the best oils. Right now we have been using Thursday Plantation Tea Tree Oil, which I have found to be good.
As for a Functional Medicine Doctor or Wholistic Practitioner, we are quite limited because we are in Canada and he lives in a small city.
If things go as planned, he will be seeing a Naturopathic Doctor soon and has recently started a good regimen of probiotics. He is very conscientious and doesn't want to spread it to others, so he's waiting until it gets a little better before going out.
This is very difficult.
I appreciate your comments, good insight. We don't want to overdo treatment as you are right, it could make things worse. It is good to bounce ideas off of someone that understands what he is going through. Thank you.

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Fortunately, I don’t have these awful mites. What struck me was the comment in the original post, written by an RN, clearly not a dummy, that she has suspected Demodex Mites and none of the dermatologists seemed to consider mites. It seems to me that too often doctors of almost any stripe look for the complicated condition and can’t seem to find the obvious solution. I have a story about a veterinarian friend who attended monthly seminars that often focused on this that or the other condition or disease. While I exaggerate, it seemed to us that every patient he saw for the next few weeks was checked for that last seminar’s disease. We came to call it the disease of the month. Truly, neither our friend nor all those people doctors really do that. But I sometimes think they get so much information they often “can't see the forest for the trees.”

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