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.
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!