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@teeneybeans I actually have been hit in the face with an airbag yes not directly in my face but neck and chest. I had these before that though and had never been hit with one previously 🙁
Holy smokes everything you have described is precisely the exact same thing I'm experiencing, right down to the adjacent cystic acne, which I noticed a while back and assumed was being caused by whatever the hell these white plugs are, as a secondary symptom or whatever.
I did a bit more research on the Morgellons thing, and while it does seem like a candidate, there are a couple of things that don't match up, such as the "hairs" or fibers or whatever that are associated with Morgellons are supposedly microscopic, and require a strong magnification (like 50x or so) to be able to see. And while the ones I have are very small and fine, they're definitely not microscopic.
So, I did a bit more searching and digging and reading, and I came across another condition called fibrosis that seems to kinda fit the bill, at least after a quick skim of the information. I've attached a screenshot for quick reference, and here's the link to the article:
https://ntp.niehs.nih.gov/atlas/nnl/integumentary-system/skin/Fibrosis
Now, be sure to note that this info is based on the clinical observation of a MOUSE (lol), but you get the idea. There's a whole lot of medical terminology in there that I obviously am not familiar with, and also since I am not a medical professional of any kind I could be grasping at straws here - but then, haven't we all been doing just that this entire time? It's so frustrating.
Parenthetically, something I've been thinking about with regards to these dermatologists that have been no help is that they (along with most or all other medical professionals) always seem to bristle and scoff at a patient whenever we mention that we've tried doing our own research and reading in an attempt to come up with some answers, and they almost always IMMEDIATELY dismiss whatever it is we've come up with. And like...I get it. There's a LOT of misinformation out there, and generally speaking, the average person who claims to "do their own research" isn't typically capable of sifting through the garbage on the internet, and can't differentiate between solidly documented scientific information and the all the hokum out there. Having said that, I believe that a Dr automatically dismissing anything a patient has to say just because they've mentioned looking for answers online is detrimental to the patient in a number of ways.
ALSO: While these medical professionals make it clear that they are uninterested in any patient's input gleaned from their own efforts to find answers and learn more about their condition, I have yet to find one that is willing to SHARE any helpful or educational information with their patient AT ALL. So it's like, we go to these derms practically begging for help, and we get a lot of shrugs and we're sent away with prescriptions that we know aren't going to help and an admonition to stop picking at our skin. Over and over. So we start doing our own research and try to bring what we've learned to these same derms, and we're met with eyerolls and dismissal. ARGH.
Anyway, I'm just venting. It's frustrating.
But, after having gotten all of that off my chest, I'd like to share a tiny glimmer of hope - I have recently started on YET ANOTHER new topical, and damned if it doesn't actually seem to be helping...!
Now, please be aware that I've only been using it a few days, but already my wounds and lesions seem to be receding somewhat. I know it's too early to tell (I've had other meds and topicals that seemed to help a little at first then stop), but I'm hopeful in spite of myself. It's called Dapsone, and it was pretty expensive (at least to me), but it was recommended to me by another member of this forum who reached out to me in a private message and told me they were seeing a lot of improvement with it. (I don't want to name them directly since they haven't posted about it themselves, and I don't wish to overstep any bounds.) After doing a quickie Google search to learn about Dapsone and how it works on various forms of acne as well as folliculitis, I decided to give it a shot because why the hell not. And like I said, it does seem to be helping, so do what you will with this information. If anyone else here tries this stuff, please do report back and let us know if it's working for you!
And to answer other questions posed in previous posts by others - no, I've never been hit by an airbag in a car, and no I've never had a skin scraping done. You'd think a dermatologist would try that, but what do I know. 🤷♀️ Lol
@finerfeedback Hi, fellow traveler. I got on low dose Ozempic, which helped about 50% (I am thin, not a weight loss issue). I greatly suffered with energy, among the many other things, and it helped me 50%. Then my doc added Glipizide, which has been amazing. However, the lowest dose sent me very hypoglycemic. Doc ordered the med to be compounded at a much lower dose than clinically available - and that seems to be a good balance. I am still in remission - if you can call it that. I still do better with a keto-ish diet - but I can eat more variety now on the meds. Sometimes sugar/glucose spike causes me to develop itchy spots on my skin, but they are not like the ulcers I used to have.
@maybeitsgluten maybe get a continuous glucose monitor (Amazon, also known as CGM) and watch what happens when you eat a doughnut. I'd love to hear the results.
@marimariemorrison Yes, that was me as well. Maybe try a Glucose monitor, CGM? If you have a doctor, I would suggest the following blood tests: Sodium, Selenium, Iodine, Thyroid panel with free T3/T4, Cytokines, Natural Killer Cells, Amino Acids, Leptin, Glucose along with Insulin, C-Peptide, Pro-insulin, Oral Glucose Tolerance Test, Ketones, Free Fatty Acids, Lipoprotein A. Some of these you can order yourself if in the US.
I find the glucose and gluten comments interesting. When this first happened with me I was having INTENSE cravings for sugar. I was chugging pop like it was nobodies business, eating candy like never before. Never in my life had I ever had sugar cravings like that. I am happy to say I have no plugs or sores at the moment. I discovered the dapsone and its been amazing. I agree with another user that retinol is the first line of defence - I really needed to slough away the area and tazarotene has also been a key for me. That along with the dapsone and topping with Vicks vapo rub overnight has gotten them all gone. I still dont know the reason for all of this and am terrified they will come back, but this has been the first time in years I look forward to leaving the house.
I wanted to chime in over here after following along for years. I finally found a dermatologist that is determined to find an answer and a resolution. I had a punch biopsy done today, as BCC was a possible concern. She was able to rule out fungal/bacterial/worm/yeast etc. She left an open line for me to communicate back and forth with her while we wait for my results. Im relieved. Finally a derm who let me talk, tell my story, didnt interrupt, never mentioned picker, looked through all of my photos, even read along with some of your posts! She said she (obviously) cant diagnose any of you guys on the thread for legal reasons. But shes on board and in it for the long haul. She did a punch biopsy on a spot that was about two weeks old and one on a spot that was under 48hrs old. Shes going to have them tested for everything under the sun. She had also suggested the possibility of her teaming up withan Endocrinologist, Immunologist,and a Rheumatologist after we get the results from the biopsies. Something set off a lightbulb for her while she was looking through the pictures andhearing my story. Theres a possibility thatsomething internal hasgone haywire since I went fromzero acne to BAM....unknown,deep, long lasting, scarring, dont know what this actually is, 3 year battle. That made her raise a brow for sure and brought up the topic of internal issues. Shes researching on her end, Im researching on my end. Were staying in communication with each other. But shes not giving up on this and said that even if this leads to it being handled by a different doctor, shes standing by me the whole way.
Ill be sure to update after theappointment for the biopsy results (Sep 18th). I never thought about this being something other than skin related, but maybe it is a glimmer of hope for some of us that the problem may actually be coming from something off balance inside. Definitely makes me wonder. And after a quick google search (I always double check a doctors statements nowsince this skin issue started) she may be onto something. Im curious, have any of you seen animmunologist/rheumatologist/endocrinologist for this???
Hi all, been reading this thread for a while and wanted to add a data point. I have all the similar symptoms (Morgellons) and it turned out to be Lyme disease and Bartonella. I know the research says that the fibers are always microscopic but please believe me when I say that is not always the case! I have plenty of fibers that are very small, but still visible to the naked eye. So please dont use that information to rule this disease out. Since this is a systemic infection, there are a huge number of possible symptoms. I think the manifestation can look a little bit different for each individual. If you are still unsure if Morgellons is even a real condition, I recommend reading about bovine digital dermatitis. It is a very similar infection seen in cows (and no, theyre not delusional or undergoing psychosis lol). It is possible to beat this but it can take a long time and a lot of medication, so dont get discouraged. Combination antibiotics have really helped me but I still have some ways to go! Seeing an LLMD is the best course of action because they wont doubt your sanity.
I find the glucose and gluten comments interesting. When this first happened with me I was having INTENSE cravings for sugar. I was chugging pop like it was nobodies business, eating candy like never before. Never in my life had I ever had sugar cravings like that. I am happy to say I have no plugs or sores at the moment. I discovered the dapsone and its been amazing. I agree with another user that retinol is the first line of defence - I really needed to slough away the area and tazarotene has also been a key for me. That along with the dapsone and topping with Vicks vapo rub overnight has gotten them all gone. I still dont know the reason for all of this and am terrified they will come back, but this has been the first time in years I look forward to leaving the house.
Hi, I was wondering if you could elaborate on the Vicks vapo rub?
You say you're using it on top of the Dapsone, correct? Do you only use it on the lesions themselves, or other spots? And only at night?
@finerfeedback @25years @mizweirdo
Hi! Just a pre-holiday check-in. I know a lot of us may not exactly be feeling festive dealing with this issue. How is everyone holding up? Is the colder weather keeping things at least slightly at bay for you all?
I personally don't have anything noteworthy to report. I've only been using the Dial Gold "Advanced Clean" Antibacterial Bar Soap (contains Benzalkonium Chloride 0.10%) to wash my face. I prefer it over Hibiclens. I don't have any open sores, but I am dealing with 2 cyst-like lesions, and a spot that looked like it scarred, but now looks like it's preparing to have more of those plugs underneath. I don't think there's a point in elaborating. Fun times.
How are you all? Sending virtual hugs xx
@finerfeedback @25years @mizweirdo
Hi! Just a pre-holiday check-in. I know a lot of us may not exactly be feeling festive dealing with this issue. How is everyone holding up? Is the colder weather keeping things at least slightly at bay for you all?
I personally don't have anything noteworthy to report. I've only been using the Dial Gold "Advanced Clean" Antibacterial Bar Soap (contains Benzalkonium Chloride 0.10%) to wash my face. I prefer it over Hibiclens. I don't have any open sores, but I am dealing with 2 cyst-like lesions, and a spot that looked like it scarred, but now looks like it's preparing to have more of those plugs underneath. I don't think there's a point in elaborating. Fun times.
How are you all? Sending virtual hugs xx
I am doing much better, I'm still having tight muscle issues, the hair things are coming out of me! Everyday Im a little better! I do think I have morgallans disease - I also think it is connected to a parasite. Ever since I been doing parasite cleanse my whole body feels better!!! The joint pain, my muscles, I sleep all night, I gained 8lbs in the last 3 weeks (5'8, 104lbs, felt like I was disappearing), my energy level is up, less headaches, the plugs are way less all over me! I'm breaking the web inside me. Also I started red light therapy. I'm healing, I want this all gone by 2026. Im thankful for this athletic tape! This had a big part of my journey. Get you some athletic tape and wormwood
Sorry for the late response, the holidays are always a bit of a struggle for me.
As far as my skin is concerned, it's about the same, maybe worse. I just can't seem to get this thing under control, and as someone who struggles with dermatillomania, it's been extraordinarily difficult to leave the lesions alone as you can imagine; I'm sure I could keep my hands off it if there wasn't this deep, unbearable itch, but when the lesions become inflamed and irritated, the itch is impossible to ignore. Some days I feel like I want to scoop out huge, deep chunks of skin just to get some relief.
I've been using a cleanser from La Roche posay, but it's almost gone and I think I might try the Dial one you mentioned, because this one I've been using doesn't seem to be helping much.
I do have yet another appointment with yet another dermatologist, though; this one came from a referral that I don't actually recall requesting (??). I've been using a service called Rocket Doctor which provides virtual (phone or video) appointments with medical professionals, and it's way easier and faster than trying to get an appointment with a GP in person. (The province I live in has a shortage of doctors at the moment, and even finding one that's accepting new patients is nearly impossible.) Anyway, the last doctor I saw through this service is the one I requested the Rx for Dapsone from, which I did receive and am still using. (It's not being as helpful as I hoped, but it's sort of keeping things at bay somewhat; it's helping to keep the lesions reasonably dry so they have a better chance to heal, because without it the lesions remain kinda weepy and they never really dry down properly, so they just stay as they are.)
Anyway, long story short (TOO LATE), I received a message from Rocket Doctor a couple of weeks ago saying one of their dermatologists is available to see me in early January, and asked if I would like to take the appointment. I can only assume that the doctor I acquired the Dapsone Rx from took it upon herself to find me some additional help which is very nice, and of course I said yes I would happily take the appointment. It's on January 2nd, so if anything comes of that I'll post an update.
One thing I would like to mention (I can't remember if I've mentioned this before) is something weird that I've been noticing for a while: I seem to be sprouting quite a proliferation of hairs on my forehead (and a few on my chin) where the lesions are/have been. This is different than the weird hair-like fibers I've pulled out of a couple of the lesions - they appear to be overgrown vellus hairs, and they're definitely concentrated in and around the lesions, and the spots that formerly had lesions but are (usually temporarily) healed. Now, I know that the majority of vellus hairs on one's face, especially on the large, flat areas like forehead and cheeks, are quite small, almost imperceptible, usually no more than a mm in length, and so translucent that they're practically invisible. But these are very easy to spot - they actually more closely resemble my arms hairs than vellus hairs. (Admittedly, I don't have very visibly hairy arms, but it's obviously much moreso than any vellus hairs should be.) They've been up to about half a cm in length, and are sprouting all around the edges of the lesions and many within the lesions themselves, which I found extremely odd, and has never happened before, at least not until about a year ago or less. This is something I've actually mentioned it to a couple of the dermatologists I've seen in the past, but it's been completely brushed off or ignored each time. I don't know if it's significant or not, but seeing as how they're only spouting in these very specific spots, it seems related.
Anyway, sorry again for another lengthy post. If anyone has any new breakthroughs or ideas, I'd love to hear about it!
Take care, everyone.
I always prefer that someone has medical testing to prove a need, as technically there are many rare skin diseases out there. I would assume that some on this site do not all share the same issue. That being said, this suggestion is something you can monitor yourself by purchasing a Continuous Glucose Monitor. If we are the same, Amino Acids are your friend. Leucine and Arginine help the body to release insulin. You can also buy on Amazon. Please do research anything I say to make sure it is appropriate for you.
Okay so
As I mentioned in my last post, my virtual dermatologist appointment was today. Or at least it was supposed to be.
I had logged into the site early as instructed and was waiting for the doctor to join the session, and about 3 minutes past the appointment time I suddenly received a text message and an email informing me that the appointment had been cancelled, with no explanation.
I immediately wrote an email to the patient coordinator who set up the appointment for me asking why it had been cancelled, and just as I sent it off, another email came in which offered this explanation:
"Following your recent appointment with Dr. Galas, based on the images provided, your concerns are consistent with excoriation disorder. At this time, an in-person evaluation by a dermatologist is recommended, as it will allow for a more thorough assessment and a tailored management plan.
Dr. Galas noted that medications for mental health may be part of treatment, but he understands these have not been options you were receptive to previously. The dermatologist will be able to guide the next steps in care."
I could honestly just cry. I want to give up. I don't know what I can do if no doctor believes me. I feel like being upfront and honest about the dermatillomania has only hurt me in the long run; I should have kept that to myself from the start, and now there isn't a single doctor who will believe me or help me.
@dar-wins - I have read all of your posts wherein you recommend the Continuous Glucose Monitor, and I have looked into it, but they are quite expensive; I simply cannot afford one. I don't have any health coverage right now, but even if I did, I doubt they would be covered for me because it's considered equipment for diabetics and I don't have diabetes. However, I did look into the two amino acids you mentioned, and I will probably try to get my hands on some Leucine to add to my supplement regimen. I think I will give the Arginine a pass though, because there are some medications and supplements it can react with which I take.
@bjham - I looked up the DMSO you mentioned, and I might decide to give this a try as well, but I want to look into it a little further first.
Anyway, that's my update.
I hope you're all doing well.
Hey, so I wanted to touch base with everyone and tell you all about something that occurred this evening.
I've had a couple of particularly bad spots that I've been trying to get to heal, but they just won't. Even if the lesions scab over and I leave them alone, they remain angry and painful and itchy deep under the skin, and the lesions won't dry out and heal - the scabs gets kinda mushy underneath and starts getting kinda "weepy", for lack of a better term. I then inevitably will remove the plaques and will see a new cluster of little white things, which I will then pluck out because historically that's the only way I've found any relief, and sometimes the lesion begins to actually heal.
Anyway, this evening that happened again. I have a pair of fine needle nose tweezers that I use as carefully as possible to try to mitigate any damage to the skin when extracting the white thingers. And, as most of us have experienced, they often come out with a little hair attached at the end, which has led me to believe that this is some weird, resistant form of folliculitis that doesn't seem to respond to any treatment. But tonight, as I was extracting the bits of stuff from this one lesion on my chin, I felt a tug deep in the skin as though I'd gotten a hold of a deep rooted hair maybe (?), but it was weirdly painful and really adherent. So I tried to pinpoint exactly where it was and very carefully managed to grab it with my tweezers after a few tries, and when I went to pull it out, I could see the little strand of hair(?) as I pulled, and the more I pulled the longer it got (?!) until it finally broke off or released or something. And so I was standing there staring in damn disbelief at this weird little strand of something that looks like a fine hair I had grasped in my little tweezers, trying to figure out wtf it was. It was about half an inch or so in length, and white-ish coloured (or maybe semi translucent, idk).
I remembered in my researching (and I think a few people have mentioned it in this thread) that there was a skin disease that involved strands of hairs or fibers or something, so I went looking for it and realized that what I was seeing has been described as a symptom of Morgellons Disease.
And I find this DEEPLY DISTRESSING, because I know from all the reading I've done that the majority of doctors and dermatologists believe it's a purely psychological condition, with no actual "real" physical manifestations of symptoms of any kind.
Which means the chances of getting any Dr or derm to take me seriously ever again is slim to nil. Which means I'm screwed. ☹️
But look, guys - I KNOW I'm not crazy, I know what I experienced and what I saw. I've never believed or thought that I had "parasites crawling around beneath my skin" or anything like that. I mean, the itch deep within the lesions is always an extremely weird, almost "tickle-y" kind of itch, but I always assumed that probably had something to do with the nerve endings in the skin (like the white thingers were impinging on the nerves, or nerve damage from too much excoriation or something).
I didnt keep the hair or anything because I know for a fact that if I tried taking it to a medical professional to get them to look at it, they wouldn't believe me, and would DEFINITELY just write it off as some kind of psychosis, so I figured there was no point. (But when I started writing this post, it occurred to me that I should have at least tried to get a photo of the hair before disposing of it. 🤦♀️ Although, it was so thin and light that getting a clear image probably would have been difficult.)
I've experienced the sensation of pulling on a very very deep hair or something in a couple of other spots previously, but only once I was able to extract whatever it is, and it was a while back (like several months ago); it was a weird little hair, not as long as this one, and I found it perplexing but ultimately wrote it off as maybe it was just a fiber that had gotten into the lesion somehow (although I couldn't figure out why it seemed to be so deeply and securely attached).
Anyway.
I needed to get all of this off my chest, and this is the one place that I felt like I could talk about it and maybe not be dismissed as crazy or delusional. ☹️
If anyone has any ideas, or suggestions, or even similar experiences please please please reply and let me know. I'm really bummed about this and I don't know what I could possibly do with this new information. ☹️
New to this forum but have been reading pages of it for about 3 months. Finally decided to make a login because of your comment above. 100% can relate and I know exactly what you are talking about and agree down to a T. Actually had 2 of them today. Down to the feeling of the deep tug in the skin. Sometimes I feel that and a small pointy hair comes out and sometimes I feel that and a thicker long plug will come out that I am not sure if hair is in the middle or not and sometimes its just the white plug and definitely no hair. Sometimes the plugs are harder sometimes they give the appearance of a rubber band with elasticity like the little piece stretches then pops out. (freaks me out you mentioned parasites had not heard that one) Anyway - You are not crazy. I have very thick peach fuz on my face though and agree it seems hair connected. I am 33 going on 34 female and this condition has haunted me my adult years and is getting terribly worse. Mainly on my face and neck and around my hairline. I of course now have scarring and this thread is nice to talk to people but so sad that no one can figure it out. Should we write a celebrity, they seem to get stuff taken care of if it is visually an issue. ugh. I am on the first month of Spironolactone for acne but have low hopes. I have done rounds of doxycycline and it will help but never help in full and I hate doxy side affects. I just can't believe there are 38 pages of this and no answers. I am so sad because of the scarring. I am supposed to check back in with a derm in a month but I am having a terrible outbreak where the clusters make cystic acne underneath and it is so frustrating. I was going to try to book another derm soon but I am also considering functional medicine, its just more money. Thinking of calling my med spa and spilling the tea and sharing the forum and begging them for help and see what they come up with. They are great and seem to listen better than the derms. I have two spots right now one on the back of my neck near the baby hairs at the back of your neck that has not healed in over 7 months and one in the top right corner of my forehead also by hairline that has not healed fully in 3-4 months just keeps doing the above cycles, filling up with fluid eventually then gets the pressure so peel the top off or it rubs off and boom, there is the plug or plugs. I am so desperate for help but the sensation and texture make it impossible not to pick. The cystic stuff will get so bad underneath it will look like I have a knot on my face if I do not remove the plug. Ugh. Anyway. Thanks everyone for sharing I will also share any findings.
Use the athletic tape! Something about the tape it pulls them out, keep retaping until the area is fully healed (from the inside out). The shit that has came out of me is sci-fi. Also, baking soda and peroxide baths (pour a lot! And sit until it's cold then rinse in the shower, you will literally see the things floating in the water)
Sorry for the late response, the holidays are always a bit of a struggle for me.
As far as my skin is concerned, it's about the same, maybe worse. I just can't seem to get this thing under control, and as someone who struggles with dermatillomania, it's been extraordinarily difficult to leave the lesions alone as you can imagine; I'm sure I could keep my hands off it if there wasn't this deep, unbearable itch, but when the lesions become inflamed and irritated, the itch is impossible to ignore. Some days I feel like I want to scoop out huge, deep chunks of skin just to get some relief.
I've been using a cleanser from La Roche posay, but it's almost gone and I think I might try the Dial one you mentioned, because this one I've been using doesn't seem to be helping much.
I do have yet another appointment with yet another dermatologist, though; this one came from a referral that I don't actually recall requesting (??). I've been using a service called Rocket Doctor which provides virtual (phone or video) appointments with medical professionals, and it's way easier and faster than trying to get an appointment with a GP in person. (The province I live in has a shortage of doctors at the moment, and even finding one that's accepting new patients is nearly impossible.) Anyway, the last doctor I saw through this service is the one I requested the Rx for Dapsone from, which I did receive and am still using. (It's not being as helpful as I hoped, but it's sort of keeping things at bay somewhat; it's helping to keep the lesions reasonably dry so they have a better chance to heal, because without it the lesions remain kinda weepy and they never really dry down properly, so they just stay as they are.)
Anyway, long story short (TOO LATE), I received a message from Rocket Doctor a couple of weeks ago saying one of their dermatologists is available to see me in early January, and asked if I would like to take the appointment. I can only assume that the doctor I acquired the Dapsone Rx from took it upon herself to find me some additional help which is very nice, and of course I said yes I would happily take the appointment. It's on January 2nd, so if anything comes of that I'll post an update.
One thing I would like to mention (I can't remember if I've mentioned this before) is something weird that I've been noticing for a while: I seem to be sprouting quite a proliferation of hairs on my forehead (and a few on my chin) where the lesions are/have been. This is different than the weird hair-like fibers I've pulled out of a couple of the lesions - they appear to be overgrown vellus hairs, and they're definitely concentrated in and around the lesions, and the spots that formerly had lesions but are (usually temporarily) healed. Now, I know that the majority of vellus hairs on one's face, especially on the large, flat areas like forehead and cheeks, are quite small, almost imperceptible, usually no more than a mm in length, and so translucent that they're practically invisible. But these are very easy to spot - they actually more closely resemble my arms hairs than vellus hairs. (Admittedly, I don't have very visibly hairy arms, but it's obviously much moreso than any vellus hairs should be.) They've been up to about half a cm in length, and are sprouting all around the edges of the lesions and many within the lesions themselves, which I found extremely odd, and has never happened before, at least not until about a year ago or less. This is something I've actually mentioned it to a couple of the dermatologists I've seen in the past, but it's been completely brushed off or ignored each time. I don't know if it's significant or not, but seeing as how they're only spouting in these very specific spots, it seems related.
Anyway, sorry again for another lengthy post. If anyone has any new breakthroughs or ideas, I'd love to hear about it!
Take care, everyone.
The tape will make your skin feel better, like putting water over a fire. I know the itch all to well and it is hell! It's the itch you will never scratch. I think the hairs have tiny little spikes on them so when they move it's just unbearable for us. The tape takes that feeling away so you can do simple tasks without stopping every 3 seconds. Try it! It sounds crazy but the shit we are dealing with everyday is crazier.
I have been considering trying this, but I'm a little hesitant. I have a pretty strong sensitivity to adhesives, so I'm worried about my skin having a bad reaction and making things much worse.
I'm also unsure about exactly how it works on open wounds...? Like, do you keep putting the tape on & ripping it off the raw lesions? Because that sounds like a bad idea to me, lol. And if the lesions aren't raw and open, they're scabbed over, and using tape on those would simply tear the scab off.
I have been considering trying this, but I'm a little hesitant. I have a pretty strong sensitivity to adhesives, so I'm worried about my skin having a bad reaction and making things much worse.
I'm also unsure about exactly how it works on open wounds...? Like, do you keep putting the tape on & ripping it off the raw lesions? Because that sounds like a bad idea to me, lol. And if the lesions aren't raw and open, they're scabbed over, and using tape on those would simply tear the scab off.
Yes and no, so you tear the tape off depending on your skin at the time, the plugs and other debris get stuck in the tape and comes off kinda like that black mask. When my skin dies up I rip the tape off fast and it pulls hella stuff out from every single pore (much better then using the tweezers for hours). The tape is also clearing off the dead thick top layer of skin- I never knew my skin was thick until now that it feels lighter! For some reason the hair worm thing comes to the surface, once the hairs are out from way under the skin that area will dry up then clear out! You want to dry your skin out as much as possible - worry about moisturizing after healing! This tape is only athletic tape, if it leaves a minor red mark oh well! Get this shit out! The red mark will fade in a couple days, I have areas that been fucked up for months and years! Just try it! I wish someone on here would! It's literally healing me! And I have delt with this for over 20 years, I'm now healing at 41 years old
Heres some tips. Ive had this and Ive been reading this form for years and dealing with this for years the plugs. Here are some things that have helped. Also, you wanna make sure your pillow case is cleaned often and keep your hair washed, If its on your face. Band-Aid brand pro healing for deep wounds with it. Currently am in the healing process have some small ones, but I have come a long way with this regiment. I believe what helps the most is the peel especially if you have it on your face Ive used it on my arm as well, you can use everyday. I wash in the bar gold antibacterial dial. Even my face. I also put some urea cream that is with some lotion from Walmart on my arms. You still might have to pull some plugs from what is healing every now and then. The pink stuff does burn but no worse than the pain of dealing with this.
Hi! Apologies for the delayed reply. I'm sorry to hear about your dermatologist appointment. That was totally unprofessional. I'm going to be honest, disclosing the dermatillomania works against you immensely. They judge you based on that before they even see you which is not right, but it is reality. Even more concerning is that they don't say "okay, this patient has dermatillomania...but that doesn't explain these white plugs we're seeing" 🙄 Talk about flawed logic. I'm not sure how it works where you live (Canada?), but in the US, there are various medical centers and private practices. Some of the most well known [academic] medical centers include places like Mayo Clinic, Cleveland Clinic, Johns Hopkins, NYU Langone, Mount Sinai Health, etc. depending on which state you live in. I can go see a family doctor/internal medicine doctor at, for example "123 Apple Drive - Mayo Clinic", and he can document that I have dermatillomania in my file. Then, if I go see a dermatologist who works at a different location, "456 Blueberry Drive" BUT it's also a Mayo Clinic facility, that doctor can see that dermatillomania diagnosis. The reason is because they use the same electronic record system. If I were to go to a Mayo Clinic, and then a Cleveland Clinic location those files wouldn't automatically be shared (unless I specified for records to be sent) since they're using different systems.
I looked up the way it works in Canada and apparently they share way more records between doctors/practices in the US, but it's also based on provinces. The new derm could see your records if you were referred by another doctor because they attach your file/history. If you're ever getting referred you have to ask them not to do this. Apparently you guys also have something called "CareConnect" and/or "Health Gateway". You need to check on Google, but there is a way to mask these records (prevent a new derm from seeing the prior derm's notes) by contacting Health Gateway and restricting access via CareConnect. If you ever want to see another derm regarding this problem, which is very clearly NOT dermatillomania induced, I highly suggest you do this. Judgement is medicine is very prominent, and it's up to us to advocate for ourselves.
Here's the good news: they saved you some money (assuming you have a copay/other fees). How many doctors do you think we've all seen between all of us on this thread? My bet is this doctor wouldn't have been very helpful anyway.
Addressing other points:
In a previous post you brought up a proliferation of hair. I have also noticed a proliferation of facial hair. The reason that it gets brushed off is because dermatologists likely attribute it to increased age and fluctuation of hormones (decreased estrogen levels), and therefore it's seen as "normal". I'm constantly thinking about what other changes/events were going on in my life when my first "lesion" appeared. My first "lesion" was during a very stressful time in my life. I always had super thick, healthy hair. During this time I experienced significant hair loss despite not changing any hair products or dying/styling my hair. I assumed the bad skin & hair loss was all related to stress. However, something other than just hair loss occurred. I noticed that the structure and texture of my hair changed in a span of about 6 months. My hair felt very dry. Not only dry, but the structure of individual strands felt literally like wire. I'm 99% certain it's "pili torti" and "trichonodosis" (single knots at the end of some strands due to how brittle the hair is). Although it's somewhat better, I still deal with this today. Here's what's interesting: pili torti is caused by abnormal keratin structure/abnormal keratinization. This got me thinking because I was diagnosed with keratosis pilaris (excess keratin plugs), colloquially known as "chicken skin" when I was ~ 10 years old. I essentially forgot about it because it was only on the back of my arms when I was younger, and it was well managed simply using a acid based exfoliating scrub until I was a teenager. After that it simply went away - I never even used a scrub in my 20's, and I forgot I ever had it. According to what I've read, having keratosis pilaris go into a state of "remission" is typical after your teenage years. Have you ever experienced something similar? Any issues with your hair/nails? I wonder if this isn't all related & if we're dealing with a keratinization disorder.
My skin has been so bad after the holidays (holiday diet) - new spots. I was applying anti-fungals, zinc based diaper cream, etc. Nothing was helping and I kept getting new spots. I was really upset and that's when I went down the keratin disease rabbit hole. I decided to try to treat this as keratosis pilaris or some sort of other keratin disorder. I've been applying prescription tretinoin cream on the spots and they're significantly better after just 3 days. When I say "significantly better" I'm talking about it went from those weeping open lesions to fully closed, almost totally gone spots. I'm going to try to implement some sort of routine where I alternate topical tretinoin, urea and/or other keratolytics (acids) with "rest days during" the week. If this really is a keratin disorder then consistency is going to be imperative (which I'm not great at). At the moment, this makes a lot of sense to me because my skin DID clear up when I was on oral tretinoin and only flared up again when I took very low doses or skipped days. I'm also going to research more about copper deficiency. Copper deficiency is related to increased keratin plugging, brittle hair, dull hair/skin, AND poor wound healing. However, you have to be careful with how much copper you supplement because too much copper can cause zinc deficiency (alternatively, too much zinc can cause copper deficiency).
I don't know if any of this will work long term, but that's my current plan (topical tretinoin, keratolytics on alternate days with breaks + copper supplementation research).
Other points:
I really don't see the point of investing in a glucose monitor. Your glucose drops, and increases throughout the day after you eat something. Even if you discover that your glucose increases at various times even when you didn't eat, so what? What are you supposed to do with that information to treat this condition? It tells you nothing, especially because glucose can spike simply due to stress. Can you be pre-diabetic and have a normal fasting blood glucose test? Sure, but again, how does that help us treat this? It doesn't. You know what you're supposed to do if a continuous glucose monitor shows you may be insulin resistant? Change your diet (avoid sugar), exercise, and lose weight. If that worked I wouldn't be dealing with this condition anymore.
I also purchased DMSO when I first discovered this thread (it was mentioned on one of the oldest posts). I spent like $20-$30 on it & it's just sitting in my cupboard 🥴 The point of DMSO is to help any product penetrate your skin better. It's essentially pointless when the products we're using aren't the correct treatment because we don't even have the correct diagnosis.
Anyway, apologies for my novel. Let me know your thoughts. Wish you well!
Okay so
As I mentioned in my last post, my virtual dermatologist appointment was today. Or at least it was supposed to be.
I had logged into the site early as instructed and was waiting for the doctor to join the session, and about 3 minutes past the appointment time I suddenly received a text message and an email informing me that the appointment had been cancelled, with no explanation.
I immediately wrote an email to the patient coordinator who set up the appointment for me asking why it had been cancelled, and just as I sent it off, another email came in which offered this explanation:
"Following your recent appointment with Dr. Galas, based on the images provided, your concerns are consistent with excoriation disorder. At this time, an in-person evaluation by a dermatologist is recommended, as it will allow for a more thorough assessment and a tailored management plan.
Dr. Galas noted that medications for mental health may be part of treatment, but he understands these have not been options you were receptive to previously. The dermatologist will be able to guide the next steps in care."
I could honestly just cry. I want to give up. I don't know what I can do if no doctor believes me. I feel like being upfront and honest about the dermatillomania has only hurt me in the long run; I should have kept that to myself from the start, and now there isn't a single doctor who will believe me or help me.
@dar-wins - I have read all of your posts wherein you recommend the Continuous Glucose Monitor, and I have looked into it, but they are quite expensive; I simply cannot afford one. I don't have any health coverage right now, but even if I did, I doubt they would be covered for me because it's considered equipment for diabetics and I don't have diabetes. However, I did look into the two amino acids you mentioned, and I will probably try to get my hands on some Leucine to add to my supplement regimen. I think I will give the Arginine a pass though, because there are some medications and supplements it can react with which I take.
@bjham - I looked up the DMSO you mentioned, and I might decide to give this a try as well, but I want to look into it a little further first.
Anyway, that's my update.
I hope you're all doing well.
I've just made an account so I can reply. I have been on a nearly 4 year journey with various skin changes, I could write a book, seriously! I don't have time to write down the whole story right now, but after all this time I believe I have finally found a solution for my issues. I have been using tea tree oil and a salicylic face wash and stuff is just falling out of my pores. It started with the most horrendous red/purple upper arms with inflamed follicles, identical on both arms. This spread to other areas of my body. Saw a derm who said it was sun damage (despite me asking why it's all over?). Anyway, after literally hundreds hours of reading, I believe I have a demodex overgrowth - demodicosis. It's so hard to know if this is the case as there isn't much online that I can compare this to, and it appears demodicosis can behave differently in each person.
i have been treating my entire body with tea tree oil 100% - this is NOT recommended. Some days I'll chuck it on my skin straight, other days I'll mix with my salicylic face wash or tea tree soap bar. I am seeing this stuff literally scab and fall off my skin. I am seeing stuff ejected from my pores. It's INSANE and I fell into a massive depressive state during Christmas when the realization hit that I may have finally found the answer. The catalyst was my 3 year old daughter showing similar signs - I am so gutted for her and what I read online says it's very rare for toddlers to get it. Sadly, my newborn is showing signs as well which is also near impossible according to reading online.
I am currently in what I believe is a "die off" period where the mites are dying and expelling their junk, I am scabbed up but I know this is part of the process.
I had a massive outbreak of horrendous acne on face, back, chest when I was 12 and went on Accutane. Since then (I am now 38), I have been on multiple rounds of antibiotics, spironolactone, Accutane etc whenever my acne flared up. I have always had acne scaring on my chest and back, firm, smooth raised nodules that look like keloids, surrounded by little dots. They didn't itch or hurt. I recently started showering with ketaconazole shampoo and I could have SWORN the shape of the scars changed, but comparing to photos I wasn't so sure. Since using the tea tree oil I KID YOU NOT, these have started to scab and flake away, and underneath are the little white plugs which I believe are demodex. The plugs are so sore when touched.
Recently I noticed so many weird changes in my skin - not just the weird colour but rashes, large open pores, white looking pores, thick bumpy pores, sandpaper feeling skin, "track marks" in skin, the most random looking hyperpigmentation, the strangest looking wrinkles.... I am sorry if this message is jumbled I am honestly just in so much shock at my situation.
Also, I know EXACTLY what you mean about the hairs... look up pityriasis folliculorum. Is that what you mean?
@Fizika Hi, I see you've been here since at least 2019. I read through some of your post history & it seems like we've tried the same things & seemingly reached the same conclusions (at least based on your older replies). The "same conclusions" being: (1) the anti-fungals don't work, (2) chemical exfoliation may be beneficial, and (3) topical tretinoin seems to help. Has your opinion regarding any of this changed? Would you mind sharing how you're doing today? What products are you using? Have you noticed anything new dealing with whatever this is - does anything make it better/worse? Any opinion/ideas as to what the cause may be? I know you mentioned low NK cells and elevated testosterone. Are you dealing with any other health issues (including, but not limited to, hair issues)? Would appreciate any input!
@skinshit Hi, honestly nothing to write home about. You're right, tretinoin and acids help somewhat, but they don't cure it for me. I stopped using them religiously, because I simply gave up. Now I just use mild salicylic acid face wash and apply skin calming cream with zinc and silver in it. It makes my skin less inflamed and more calm, but that's about it.
I tried so much shit during those years: hormones (Testosterone, Estrogen, Progesterone), peptides (for thyroid, for ovaries, for liver, for pituitary, for pancreas), rounds of IVs (Laennec, glutathione, Reamberin, Remaxol), even antidepressants (Cymbalta). I did see improvements in mood and energy with some of those treatments, BUT NOT WITH MY SKIN. And now I'm just mentally exhausted and don't know what else to try. Probably will try continuous glucose monitor, even though blood test didn't show any problems with glucose.
My blood and saliva tests show that all my hormones are within range, but on a lower side. Low T, low E, low P, low T4 and T3, normal cortisol, very high corticosterone. MRI of pituitary and adrenals doesn't show tumors. Endocrinologist doesn't know what to make of it. She also made Bioelectrical Impedance Analysis of me (I don't know if this method is trustworthy), and said that I have protein metabolism problem. Didn't prescribe anything for it, basically said that she doesn't know what to do with me.
Things that somewhat help, but only while I take them: fenugreek, glutamic acid, glycyrrhizin (take with potassium, might be dangerous). All those supplements help my skin, but have other side effects, that makes those supplements hard to take on a regular basis. I use them occasionally.
After reading anecdotal reports on Reddit about how extremely high doses of Omega 3 cured people's eczema, psoriasis, or acne, I also decided to give it a go. I tried taking Omega 3 before, as many on this forum - it did nothing. But now I buy very specific Omega: 1) with low TOTOX index, and 2) with high EPA/DHA ratio. Also I take 6 capsules daily instead of 1-2. And I eat canned sardines ~3 times a week. I will report back if something good comes out of it. On a positive note, keratosis pilaris on my legs is completely gone after 3 weeks of this "fishy diet".
What else... Yes, mine also started during very stressful events. And it also affected my hair and nails. Nails have vertical ridges now, and hair became different, don't know how to describe it, like, they don't grow long and even, texture changed. Seems like something wrong with hair cycle.
Thank you for all of you who still have energy to post on this forum. It helps to know that I'm not alone in this. Let's keep digging.
I have to share! Lately I been using different vibration frequencys- and it's working! I have a heating pad that vibrates, also a electric razor (not to shave) anything that vibrates put on your bad spots, it's as if the vibration is breaking shit up so it can come out! I'm still doing my regular routine as well, I only done the vibrations for 1 week and can see and feel the difference. It's crazy the amount of shit that has came out of my tiny body?! I'm amazed at myself for not giving up! The worst part is definitely over, no more sores all over. I'm just de-hairing my body and then the next step will be to work on these lines and scares.