Anyone else dealing with Demodex Mites? What helps?

Hi,

I feel your pain, trust me. My daughter thinks I’m crazy mostly because she has bad vision and can’t see what I’m talking about. I’m in tears writing this to you. I have had bad acne in the past and now that I think of it I probably had rosacea too because my face has always been red. I was diagnosed with dermatitis too. The cream did not help one bit. Every doctor thinks I’m crazy because I told them I have the same thing. They are eating my face and head alive and now they are in my ears and moved to my body. I’m using tea tree oil, but they keep coming back. I can’t sleep, I’m up to 5 in the morning. I cry myself to sleep every night. I’m scared I will give them to my dog and my daughter. The doctors just ignore me. I tried to get an rx for Ivermectin, but they said you can’t get it in Canada. I don’t know what I’m going to do. This is literally driving me crazy, I’m having diarrhea constantly, it’s upsetting me to no end. Please help me.

Hi, I'm battling Demodex going on 3 1/2 years now. First, you are not crazy! I had similar reactions except my boyfriend was present when 2 Demodex fell from my hair onto my bed and the capturing and photo session that I Google Lensed. Most Doctors will try and play it off like "huh Demodex?" Or , "yeah we all have them your Immune system must be really low cause your white blood cells should keep them in check". "There's nothing wrong with this boys scalp, let him grow out his hair!" Second...Ivermectin, Permethrin, Metronidazole and most of the other topical ointments are Livestock medication adapted for humans. Most of the ointments/creams etc., have ingredients that Demodex eat. They don't only eat Sebum, they eat Blood (they are from the same family as Ticks and Fleas) and probably a lot more of our "bodily fluids". Third...they have Exoskeletons that they can retreat into for up to 5 hours. So it isn't true that they don't need oxygen, not really anyway. When in the Exo., they don't. They can also withstand extremely high temperature. They are not indistructable. Diatomaceous Earth is great if not a little messy. Rub it all over yourself, it's a fine powder that helps break down the exoskeleton, once that's done they are easier to kill. You can mix it with TT, Peppermint, Clove, Lemongrass (or any other oil that Demodex doesn't like) into a paste rub it where you want and wrap with Saran wrap or anything else you can think of before bed. Shower in the morning of course. Wash ALL your clothes, bedding, bath towels and washcloths separately in hot water if possible using a dryer is best cause of its high heat but line drying is what lots of us can afford. I shoot down my shower with Clorox after every shower and am constantly wiping up, sweeping and mopping. I also spray bleach or other like Lysol, DEP etc before I sweep. They get everywhere, never forget that they burrow...into practically anything! They live longer then 3 weeks and have 5 stages... egg, pulpa, nymph, and 2 adult stages I guess 1 been pre adult. They supposedly only come out to mate...male and female or just males? Not sure. TT oil doesn't work for everyone like everything else you have to try it and see what works best for you. They love warm damp environments so cooler dry arid temperatures are best Air conditioning is an asset, they are not fond of cold. I've done a lot of trial and error, my bugs are mostly on my head and forehead, left eyebrow and eyelid. Don't get me wrong, they are everywhere...just more concentrated in those areas. Most importantly, Demodex is a Quadrillion Dollar money maker for more then just Big Pharma...think of your favorite department store and the aisles dedicated to Eczema, Psoriasis, Rosaceae, Dermatitis etc., whole aisles full of lotions, creams, powders, soaps, shampoo/conditioner and more not to mention medication, right? Bucku Bucks! We know it's directly linked to Demodex. Ocular Degenerative Disease they found is also linked to Demodex. BUT, more and more of us are speaking out and demanding answers and that's great! Is it enough! I don't know. I do know that my very own Dr told me he no longer help me with my skin problems and prescribing me medication like Ivermectin. Wow...ok. Like everything else in life, there is good and bad and money and greed can make a lot of good people turn bad. I believe it's part of my purpose, to expose Demodex for what it is. I wish you godspeed in your battles with them, fight fiercely an never surrender. If you have faith, pray....God answers in his time tho. Try not to let it consume you, life is outside. Don't wear hats if in warmer climates. Sorry there is just so much. God Bless

Thank you so much for this— it has given me hope in this very dark time. As it seems like it’s been for many, I too was misdiagnosed 7 times until my partner and I figured it out for ourselves and presented to the ophthalmologist with highly magnified pictures of my eyes showing them what they should have been able to see with their powerful optical tools. In that time however, they had already spread onto my scalp and into my nostrils. I was sent home being advised to use Cliradex which, while easing my symptoms to a small degree, caused extreme irritation. I demanded a referral to dermatology ( and maybe due to the fact that they’d neglected to diagnose me so many times) and was amazed to get one. I asked for skin scrapings ( which I didn’t get, of course), but was given oral ivermectin with instructions to take the first dose, followed by another the next week. Now, I’m not a scientist, but the math did not add up and I asked if two weeks was enough. You can put your money down on the fact that clearly it is not. Again, I returned to optometry after the medication and was given a clean bill of health, although I insisted that I just didn’t feel like that was the end given my returning symptoms . Needless to say, my partner and I presented photographic evidence again which clearly showed collarettes. Deflated and devastated, we decided to forge our own path— because, why not? The doctors have not been on my side from day one, even though the event that triggered this entire thing was an eye injury I suffered during a run-of- the-mill exam to update my eyeglass prescription!! I went into that appointment a whole person, never having suffered with any eye ailment, infection, stye, etc in my life, and I came out with this debilitating disease. I asked for another round of oral ivermectin and the doctor had the nerve to insinuate that we have to consider that maybe this isn’t demodex after all. WHAAAAAA??? ANOTHER optometrist just confirmed that I do indeed still show evidence of it— although I don’t need a doctor to tell me that anymore. I am living the nightmare: burning, stinging, biting, crawling, stabbing pain in my eyeballs. I have ordered oral and topical ivermectin through a reputable pharmacy online and took my second dose yesterday. I will begin topical on Wednesday or Thursday depending on the die-off symptoms ( they can be pretty intense, so I’ve got to pace myself), and will continue with two more oral doses for a total of four, and continue topical once a week. This has been known to be the magic bullet: the combination of the two, with possibly metronidazole added to the mix. I have no guidance but for the immense amount of reading that I’ve done, which honestly has helped me more than any medical professional. Reading your reply was fortification. A minimum of 3 weeks is clearly written in every medical paper I have seen on refractory cases. Ivermectin seems to be working for me, I just needed to keep going— just like *I* told the doctors.

Hi, I'm battling Demodex going on 3 1/2 years now. First, you are not crazy! I had similar reactions except my boyfriend was present when 2 Demodex fell from my hair onto my bed and the capturing and photo session that I Google Lensed. Most Doctors will try and play it off like "huh Demodex?" Or , "yeah we all have them your Immune system must be really low cause your white blood cells should keep them in check". "There's nothing wrong with this boys scalp, let him grow out his hair!" Second...Ivermectin, Permethrin, Metronidazole and most of the other topical ointments are Livestock medication adapted for humans. Most of the ointments/creams etc., have ingredients that Demodex eat. They don't only eat Sebum, they eat Blood (they are from the same family as Ticks and Fleas) and probably a lot more of our "bodily fluids". Third...they have Exoskeletons that they can retreat into for up to 5 hours. So it isn't true that they don't need oxygen, not really anyway. When in the Exo., they don't. They can also withstand extremely high temperature. They are not indistructable. Diatomaceous Earth is great if not a little messy. Rub it all over yourself, it's a fine powder that helps break down the exoskeleton, once that's done they are easier to kill. You can mix it with TT, Peppermint, Clove, Lemongrass (or any other oil that Demodex doesn't like) into a paste rub it where you want and wrap with Saran wrap or anything else you can think of before bed. Shower in the morning of course. Wash ALL your clothes, bedding, bath towels and washcloths separately in hot water if possible using a dryer is best cause of its high heat but line drying is what lots of us can afford. I shoot down my shower with Clorox after every shower and am constantly wiping up, sweeping and mopping. I also spray bleach or other like Lysol, DEP etc before I sweep. They get everywhere, never forget that they burrow...into practically anything! They live longer then 3 weeks and have 5 stages... egg, pulpa, nymph, and 2 adult stages I guess 1 been pre adult. They supposedly only come out to mate...male and female or just males? Not sure. TT oil doesn't work for everyone like everything else you have to try it and see what works best for you. They love warm damp environments so cooler dry arid temperatures are best Air conditioning is an asset, they are not fond of cold. I've done a lot of trial and error, my bugs are mostly on my head and forehead, left eyebrow and eyelid. Don't get me wrong, they are everywhere...just more concentrated in those areas. Most importantly, Demodex is a Quadrillion Dollar money maker for more then just Big Pharma...think of your favorite department store and the aisles dedicated to Eczema, Psoriasis, Rosaceae, Dermatitis etc., whole aisles full of lotions, creams, powders, soaps, shampoo/conditioner and more not to mention medication, right? Bucku Bucks! We know it's directly linked to Demodex. Ocular Degenerative Disease they found is also linked to Demodex. BUT, more and more of us are speaking out and demanding answers and that's great! Is it enough! I don't know. I do know that my very own Dr told me he no longer help me with my skin problems and prescribing me medication like Ivermectin. Wow...ok. Like everything else in life, there is good and bad and money and greed can make a lot of good people turn bad. I believe it's part of my purpose, to expose Demodex for what it is. I wish you godspeed in your battles with them, fight fiercely an never surrender. If you have faith, pray....God answers in his time tho. Try not to let it consume you, life is outside. Don't wear hats if in warmer climates. Sorry there is just so much. God Bless

Im sorry you've been through so much and it was from an eye appointment!

But you are NOT alone when it comes to Demodex. I really recommend Xdemvy. It's a 42 day program of eye drops 2x/ day. But why stop as long as there's still something in the bottle? It's expensive, but absolutely, definitely worth it.

Doctors just don't get it because they were taught that Demodex are commensal, but those of us with too many know that's absolutely not true. The pharmacy company that manufactures Xdemvy (Tarsus) just started doing a commercial about them and I've read they have a program to educate doctors. I've only seen the commercial once and 1fam hoping it will be as omnipresent as 'Ned's psoriasis' commercials.

Ophthalmologists seem to be the only ones fully aware of them but they still don't tell patients because it freaks people out. I learned about them from mine, but only by reading what she had written. She never uttered the word Demodex.

Facebook has several support groups for Demodex (stay away from the Ungex one - it's trying to sell a product). I joined 14 months ago and the number of people on it is now 4x the number from when when I joined (437 as of today and growing). You'll learn a lot from those groups, especially that doctors are a problem, if not a bigger problem than the Demodex because they aren't helping their patients.

Hang in there!