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Anyone else dealing with Demodex Mites? What helps?
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 would definitely suggest you using the Xdemvy. While I have not, I have read that others have had improvement. I was finally prescribed it, but at that time had already started my oral/topical Ivermectin route and wanted to complete the course, and the thought of putting anything else into my eyes at that point was terrifying and most likely painful ( I was convinced that I might be the small percentage that experience side effects of stinging). Again, that method was my own attempt at resolution: after seeing seven different doctors and getting no help, usable information or relief, I purchased my own medication. This after reading every single thing I could find about this disease and moving forward with what seemed to be the clearest contender for success. What I had read about Xdemvy did not motivate me enough to discontinue the Ivermectin, as their own literature gives it a 1 in 2 chance of working to the degree that I needed: total remission. I had been living with excruciating pain, night and day, 24/7, with no reprieve. The last doctor I saw had the nerve to ask me what I found to be the worst part of having Demodex. Gee, I don’t know… the constant foreign body sensation? The constant stinging? The never ending burning? The crawling sensations? The extreme puffiness? The redness? The biting? The blurriness and fear that I was losing my eyesight? That I can find nothing or no one to help? The insinuation that I have parasitosis? Let me count the ways.
The only symptom I did not experience that I have read that others do is itchiness. I may have had an itch here and there, but nothing out of bounds. When I finally started healing I began to get itchier, and I suspect that it was from the die-off. I urge you to begin the Xdemvy if you haven’t already. As I previously wrote, I have it in my arsenal now if I ever change my mind or want to try something different now that I am on “the other side”. I say this knowing that it is a tenuous state, and always morphing. I keep a very tight handle on prevention as even though it looks as if I’m outwardly clear ( zero collarettes, no debris, no puffing, no redness), there are mornings I awake with foreign body sensation and just an “off” feeling. I routinely do a once or twice a week application of topical Ivermectin at night and I think that it helps and keeps things going in the right direction. I am convinced that this will be a lifetime commitment to my wellbeing and health, but I am willing to keep it up to ensure that I never endure the devastating effects of demodicosis again. As I mentioned before, this disease nearly caused my death. So, I should have added that to my earlier list of the worst things….
If anyone were to ask ME what I would take to try to get Demodex under control it would be Ivermectin. And not the general two week guidelines that most doctors use ( from their half-day medical training on this particular disease). Most well-versed and truly experienced physicians know that it takes 4-6 weeks of oral medication followed by topical use depending on grade of infestation. It took me 4 straight weeks of pills (after the first two-week round they gave me didn’t eliminate it— even though I told them that I thought I needed more because the math didn’t work for the mite life cycle) then about a week of topical to get to a place where it felt like there was some true healing going on. Again, everyone is different and these are my own methods that I used that have brought me to remission and a chance at normalcy. I am grateful to be in a place I took for granted— who thinks that this could ever be a possibility in their lives? It’s a long, isolating road, but know that others have your back. We understand. Cuz most doctors don’t or won’t.
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1 ReactionHello, I had a number of reasons not to be enthusiastic about this product, despite the fact that three friends have used it and were quite positive about results. The clinical trials, referred to in the manufacturers info, stated 833 patients were evaluated, not nearly as large a population as clinical trials I've read about; it was on the market only a fairly short time when I was considering it, ASA approved by the FDA. My biggest concern was the fact that "under 2% of the participants" reported punctate keratitis as a side effect. PK is inflammation of the cornea which can cause temporary or permanent reduction of vision or blindness. These drops have to be repeated; they do no permanently eliminate the demodex; some of friends I referred are on their third round of the drops. They seem to temporarily give full relief .... but then the mites return . So that last risk of possible permanent reduction of vision was the stop sign for me. I still have huge misgivings but am also worried about the constant irritation to my eyes. I have a lot of floaters in my "good " eye plus (I have amblyopia) and other eye problems associated with aging. So am back to square one and still hesitant to use these drops.
I forgot to ask where are you applying the Ivermectin when you use it once or twice a week? On your face only or other areas as well? I recall you took the oral Ivermectin so assume the mites were else where. I had the same problem, in hair and eyes at first then migrations that doctors and dermatologists denied, of course .
I replied in the wrong location, to myself. Please see questions to you below the other post.
I was first prescribed Ivermectin by a dermatologist when I demanded a referral after being given so much runaround, and I was shocked to get one. I had been noticing itching in my nose and on my scalp and was concerned that the mites had migrated because I don’t have allergies or dandruff/ itchy scalp normally. Since I had finally been diagnosed as having ocular demodex ( only because *I* was the one to point it out with magnified photos) the proper treatment was the oral medication due to so many areas being affected. However, they did not heed my insistence that a two week course would not be sufficient to eliminate the infestation. I think that they have this idea that if there are only a “few” left that you ought to be in a better place. We all know that isn’t so. I was absolutely right about it not being enough, and so began my mission to acquire my own medicine.
I apply the topical cream to my eyelids, eyebrows, and lash line right before bed. You must keep your eyes closed long enough for it to penetrate and dry as you do not want to introduce it onto the eyeball surface. Every so often I do apply it to my entire face as well, especially if I see small red spots near my cheeks ( an indication of mite migration). That doesn’t happen too often, but I think it helps to keep the coast clear.
I agree with your assessment of Xdemvy and those were also concerns of mine. The newness of the product is worrisome given its lower success rate. Ivermectin has been around since the 70s and was approved for human use in the late 80s. It has helped so many people with parasitic infections, and its origin story is truly amazing. Unfortunately, during the pandemic a whole hulabaloo transpired over its use and I think it has now been heavily guarded by the medical community. That’s the only thing that seemingly explains why doctors have been so reluctant to give me a longer dose in spite of my need. Once I purchased the Ivermectin online theough s reputable company, and done a four week regimen ( 3 1/4 pills once a week for four weeks— the actual amount you need to take is computed by body weight), I really began to see change. When I started the topical after the pill course, it was the clincher. Applying it directly is truly a game changer. And even though, as I mentioned before, I am visually clear ( ZERO collarettes, no debris on lash line) every so often I have foreign body sensation, or just a little more crustiness in the morning which makes me take pause, that’s when I will do a smear. I, of course, am highly sensitive and in tune with my body and eyes and I will not stand down against this disease. I take a shower every night, peppermint shampoo every other day and change the pillowcase on that day, change bedding once a week, use salicylic washes and azelaic acid on my face and body, and tea tree soap on my pubic hair ( not on vulval area) and back. I am so grateful to be living normally again without pain, blurriness, and complete distraction over my condition. I wish the same for everyone who is in this hellish state, and I send you strength and hope for restoration.
Thank you for your info and good wishes. What brand of azelaic acid and do you use the gel or cream? I have never used it but see it referenced a lot. I thought you had to have a prescription for Ivermectin; my former PCP didn't want to prescribe it for me , concerned about negative side effects . A dermatologist did prescribe it but my insurance wouldn't approve because it's for scabies. ??? I'm in my 80's and fairly sensitive to a lot of drugs . I did use Permethrin 5% once with no ill effects. What tea tree soap do you use? What I use in pubic area seems to be an irritant so possibly too strong. I am glad to hear you have now got this awful condition under control. I have had noticeable improvement but I want it to be even more so. This daily regimen is time consuming, as you have said, it completely dominates life. I was recently diagnosed with Grovers disease so some of the symptoms I thought were from demodex for almost a year apparently was GD. Now I am learning and reading about that condition. Never ending.
@alju, ivermectin is used to treat river blindness (onchocerciasis), intestinal infection from threadworms (strongyloidiasis), and other kinds of worm infections. Ivermectin is an anthelmintic. It works by interfering with the nerve and muscle functions of worms, by paralyzing and killing them.
This medicine is available only with your doctor's prescription.
Read more about it from Mayo Clinic here: https://www.mayoclinic.org/drugs-supplements/ivermectin-oral-route/description/drg-20064397
It is NOT safe to take ivermectin used in veterinary medicine.
I want to be clear that the topical ivermectin I am using is for humans, marketed under the name Soolantra. I would never recommend the veterinary version to anyone, but what I am using has worked to eliminate my ocular demodex infestation. The oral medication was prescribed to me originally by a dermatologist, and I was then prescribed additional doses by a pharmacy.
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1 ReactionThanks for confirming, @finnbeckett. 🙂
It's my understanding, from doctors and from what I've read, that permethrin and ivermectin are prescribed for both scabies and demodex mites. That's why I thought it was strange that my insurance protested the use of it the mites.