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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.
