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Update:
I've been checking the app that holds all my medical stuff including lab results, and the test results just came through - and they're all normal. 😞
I think I give up.
@mizweirdo I'm so sorry. I (and most others on here) know how it feels to have a doctor dismiss your symptoms as self-inflicted or simple "acne". Don't give up. So many of us feel exactly like you! You are not alone in avoiding going outside/seeing people because of this! I truly believe we can find a solution to this if we collectively compare notes. There just HAS to be a way to manage this.
Everyday I've been thinking more about when this first started - where was I/what was I doing/what was happening in my life/what was I eating/what other substances was I consuming, etc. in an attempt to find a cause.
Did you (or anyone else reading this) ever get the Gardasil vaccine that is supposed to prevent HPV (and subsequently cervical cancer)?
Can you also please specify which labs she ordered?
I know how devastating it is when you have tests come back normal when we all just want answers so we can treat this. Don't give up!
@skinshit yes, i did get this vaccine in 2010, this disease have started in 2011
@mizweirdo I'm so sorry. I (and most others on here) know how it feels to have a doctor dismiss your symptoms as self-inflicted or simple "acne". Don't give up. So many of us feel exactly like you! You are not alone in avoiding going outside/seeing people because of this! I truly believe we can find a solution to this if we collectively compare notes. There just HAS to be a way to manage this.
Everyday I've been thinking more about when this first started - where was I/what was I doing/what was happening in my life/what was I eating/what other substances was I consuming, etc. in an attempt to find a cause.
Did you (or anyone else reading this) ever get the Gardasil vaccine that is supposed to prevent HPV (and subsequently cervical cancer)?
Can you also please specify which labs she ordered?
I know how devastating it is when you have tests come back normal when we all just want answers so we can treat this. Don't give up!
I've actually been thinking about finding a common link as well, but I don't know if it's possible to gather that kind of information to accurately determine whether or not there's a common denominator.
Having said that, I can add my info to the list:
First and foremost, no I did not receive that vaccine you mentioned, at least not that I remember. Pretty sure I would remember if I did? I think? 🤔
I believe this started about 10 years ago for me, but it didn't start as these plugs; shortly after I turned 40, I was hit with some really bad, painful cystic acne. I was also experiencing an extreme amount of stress from a number of different factors, including an abusive relationship and a lot of unhealed cPTSD (which I wasn't fully aware of at the time, but is the main culprit in my dermatillomania). The doctors of course just kept tossing me prescriptions for antibiotics and told me to "just stop picking". Eventually the cystic acne calmed down, but the areas of my face where I had the most trouble kept getting angry and inflamed, and started producing these weird little white plugs. And of course, since I still struggled with picking and digging a lot, I would pluck them out over and over again but they kept coming back. And it's always the same spots, every time. I have photos from 6-7 years ago coming up in my "memories" on various social media platforms that show the same sores on my face in the same places they are now. I've never understood why this is the case, or why they never grow or spread to other areas, or get way worse or way better - it's just these same spots, over and over.
I did some more reading on that Reactive Perforating Dermatosis and related conditions, and there does appear to be some causation connected to my excoriation disorder, which of course is unfortunate and just adds more shame onto the pile. 😞 But I still believe that, even if I did originally create this problem somehow, it did result in a very real condition that requires treatment, and I am desperate to find a dermatologist who is willing to help.
Anyway, sorry about the wall of text, lol. I just want to provide as much information as I can in case some of it is relevant.
I just got a referral for a place called VEROS Health in Centennial Colorado, they sound like a place I should have been years ago! I attached a pic of some of what they do
@skinshit Thank you so much for pursuing with your reply even though it initially was deleted. Thats the absolute worst and so annoying when that happens!
Im sorry for the delay in response, but I wanted to wait until my derm appointment to see what she said so that I could report it. So thankfully after seeing my photos, she did recognize that this is something not typical and that something wrong is happening here. Unfortunately she has never seen another case like this which I was hopeful for. She was very kind though and said she will show my photos to the team of derms that work there to see if they can come up with something if they put their heads together. She did suggest accutane as she thought it may be some crazy type of keratin formation. I have always believed that the skin is basically malfunctioning, but that perhaps there is a deeper pathogen internally causing it. I know my sores do in fact get worse and more severe when my immune system is down in any way. As mentioned before, I tested negative for autoimmune of any kind. Also, autoimmune typically will benefit from oral steroids. One of the worst sores I had was while I was on an oral steroid. Its like it was suppressing my immune system and the skin went absolutely nuts so I dont believe thats related.
Anyways, thank you so much for the info on your accutane experience. I know some people do have lifelong bad side effects, so its a lot to consider. Did you see any premature aging effects, facial fat loss, or a lot of hair loss? The last thing I need is to add aged looking skin as the one thing I have going for me at 41 is no wrinkles. I have read certain people say that it causes their face to lose fat which would be a major nixing factor for me if indeed true. Also regarding your gardisil vax question, I never took that vax so I dont think that is the underlying common denominator.
I for sure believe that there is a genetic proclivity as one big factor going on here as it doesnt seem to be infectious. I believe I have mentioned this before, but my top theory is that it is agrobacterium (think GMOs). At first, the powers that be were very adamant that agrobacterium could never cross into human DNA. That is until they quietly realized that yes, it certainly can (there are scientific papers proving this which I have read). Agrobacterium and Lyme are the only known pathogens that can inject themselves into your DNA and literally change how your DNA reproduces. It makes sense that there would be no skin biopsy to show a pathogen if it is your own now messed up DNA that is telling your skin to create the un-natural things within the sores. Agrobacterium in plants causes small tumors and fibrous material to be created in any injury in the plant. I dont know about everyone else, but when I look at the junk that comes out of my sores under a microscope, there are certain balls of twisted up microscopic fibers as well as fibers projecting from and around the stretchy white plugs (again, all microscopic). If this is anywhere close to the mark, there will never be a cure because that would require accountability which will never come. Plants that get infected with agrobacterium have to be destroyed as there is no cure even for plants. And yet, they decided to use this in our food. Also, this seems to be a modern, new illness as it is clearly becoming more prevalent in people who we are finding online yet docs have zero idea about it and it certainly isnt in medical books. We have been eating GMOs since the 1980s and it could now be manifesting from extended exposure. Anyways, thats my two cents and I digress.
I will update after my doctor has the meeting with the team to let you all know if there is anything there. I want to be optimistic but I dont have high hopes.
I'm happy to here that someone on here finally got a doctor to admit this is atypical and not simply "acne" or "picking". It's also great she's willing to bring your case up with her colleagues, although also worrisome that one of them will convince her you must simply be picking at acne.
In my opinion, considering this is some type of excessive keratin production is thinking in the right direction. There is something going on with our pores and hair follicles.I do not have any side effects after accutane, and I did not/do not have hair loss. I naturally have very thick hair, and the only time in my life where I had an issue with EXTREME hair loss (I mean I was literally crying thinking I'd go bald) was the exact time the first "sore" appeared. Coincidentally, this was during a time I was the most stressed out I had been my entire life. Stress is also the only common denominator I've seen so far among us - this condition flares up during stress. I see you're on the fence about Accutane - like I said, I don't regret trying it. At the very least it may help your current sores, however as you know, it did not help me long term.
Since the last time I wrote on here, I have had 3 new sores pop up. It's beyond devastating, and quite frankly ruining my life (I'm sure relatable). I would not be surprised at all if this was related to GMO's and something that is now manipulating our DNA. If that theory is true, we are screwed. Our food source is complete garbage & the people in power do whatever they want, no repercussions. Look at people with Morgellon's disease - there is a movie titled "Skin Deep: The Battle Over Morgellons" available for free on YouTube. These people have black, white, red, and/or blue fibers coming out of their sores. The CDC did some laughable study and determined that the fibers are from clothing due to people scratching the lesions. That's absolutely ridiculous. If there was any chance these fibers were from clothing, then you would be seeing green, orange, purple, pink, etc. fibers as well. It's absolutely insulting to the people who are suffering. The more I think about it, the more I think we have a very similar condition. If this is the case, then they will probably only acknowledge this as a new condition long after we are gone.
I regularly look up new things to try to figure our condition out. You're absolutely right about it becoming more prevalent. There are many older posts on Reddit about these "plugs" and I constantly see new comments under the posts with people asking if the original author found a solution. I wish some of the people who were on this thread in the beginning checked in to let us know how they are doing & if they actually managed to resolve this long term. For all we know, those who used either anti-fungals or anti-virals are still silently dealing with this. At this point, I'm totally lost on even guessing an etiology. I keep wanting to revisit herbal anti-fungals or trying something totally new to see if something works, but I'm just mentally beyond fatigued. I end up starting new possible solutions with very little hope anything will work.
Can I ask how you are managing the sores today? What products do you regularly use? What are you using to cleanse your skin, and what are you using during the day/night? I am currently using Hibiclens to wash my face, and I was using the La Roche Posay Hydrating Gentle Face Cleanser when I was on Accutane. I don't think either product does anything. I was also previously using zinc (diaper rash cream) to dry the sores out & I felt it worked, but now I don't even think that works. I just use Aquaphor healing ointment to help with scarring. Is there anything you recommend? Thanks for checking in!
I can confirm that Accutane did help my condition somewhat - the plugs themselves shrunk visibly, and there seem to be fewer of them. But it didn't go away entirely, and the side effects are no fun (extremely dry skin and nails, etc). It's definitely not a permanent solution, which is what I mentioned to the dermatologist I saw. I haven't actually been on any Accutane for several weeks now, partly because I was financially tapped out, and partially because I'd need to go through the whole rigmarole again to get a fresh Rx for it. I figured it wasn't worth it at the present time, because money is tight, plus the side effects I mentioned. I haven't seen any after effects at all, but of course the lesions have slowly begun to get worse again.
I still haven't heard back from my dermatologist to discuss the auto immune blood work I had done (which back back negative), but I'm not looking forward to that conversation; based on the patronizing attitude she had when I requested those tests, I fear she will dismiss me altogether at this point.
@finerfeedback - I'd be very interested to hear what your doctor might be able to come up with!
@skinshit Ugh I am so sorry that you have had three more come up since your last post. There is nothing more defeating and discouraging, I know. I wish I could give you better advice for how Im handling my current sores. I have tried EVERYTHING topically, internally (natural based), and many conventional treatments as well, and I really have never found anything to be highly effective. Still the only way they will ever heal fully is to get out all the plugs, clotted up blood, and junk inside of them and hope that they dont create more. Over the years I have seen 22 different doctors (natural and conventional) had everything under the sun tested from autoimmune, to thyroid, to very expensive hormone tests, hair vitamin and mineral tests, food sensitivity tests, genetic tests (I have 17 gene mutations which is BAD), stool tests, in depth gut tests, etc. After trying desperately to find something wrong with me, besides the gene SNPs, the only thing I have actually really come up positive for is Lyme via Igenix testing. Also, the doc who did my in depth gut test said that I have the healthiest gut she has ever seen (thanks to years of me working on that) but that I had more protozoan parasites than she had ever seen in a person. But all she gave me for that was berberine which seemed to help with the sores for about 2.5 months then they came right back. After years of trying such and such diet and such and such protocol, the best things I can recommend are just general health principles. Think limiting sugar as much as possible (sugar is def bad for this), sleeping a ton, getting some sunlight, trying to keep stress down, working out regularly but not too hardcore to stress the body, and eating as clean and organic as possible without stressing yourself out about being perfect. You are right that stress is a big factor for sure. I have been on every supplement on Gods green earth and have tried regiment after regiment. I have basically settled mainly on just typical ones to maintain general health (vitamin D and k2, vitamin c, probiotics, NAC, milk thistle, good multivitamin, magnesium, fish oil, ALA/ALC, etc). I am always trying some new regiment or whatever like currently Im doing a mushroom mix and I also have been taking a supplement called Paragon that has seemed to help. When I took a break from that one my skin went nuts so I started on it again. I totally get how mentally exhausting it can be trying all these things only to have them all fail its seriously the absolute worst. I have had this for at least 20 years and have been hardcore treating it for 11 with almost ZERO results.
Topically I literally can find nothing to work. Ive tried it ALL! Even crazy stuff that I was like what the heck I dont care Ill try it. Irritation only makes it worse so I just wash with cetaphil and use cetaphil face lotion as they are gentle and also geared toward acne which I have plenty of. I do occasionally use topical ivermectin when my eyes are getting irritated and skin is itchy as I believe i do sometimes have a demodex mite overload because of excess oil, and that does help my eyes and the itchiness but does nothing for the sores. I load on neutrogena concealer that has salicylic acid and for some reason this helps the irritation to lessen and the sores not hurt as much. I even sleep in it because if I wash my face and leave it exposed, it is worse. Its like the thick layer of makeup somehow helps a bit and also makes me not feel so freakish. During covid I didnt wear any makeup for months and my face has literally never been worse than it was at that point in time so thats a no go for me.
Its so funny that you brought up that documentary because I actually have had phone consults with one of the docs on that documentary (Dr. Courtney Day). She is based out of Oregon and now unfortunately will only see patients who live there or even have phone consults with people who are physically in the state. I contacted her after being diagnosed with Lyme and seeing certain (not all, but some) similarities in her story and mine. Yes it seems like there may be a possible connection to Morgellons. Not the same exact thing but maybe under the same umbrella of new, weird skin diseases that doctors have no clue about. Probably the most helpful thing I took from those phone consults was a supplement called Lightening Pearls that are a blend of Chinese herbs. Im taking a break from them now so that I dont make myself immune to them, but they were somewhat helpful. When I first had calls with her, she said that she wasnt sure if long term antibiotic combos (think Lyme treatment) were even a good idea as they put patents into remission temporarily but then the condition seemed to return. The last I saw from her, she does use intracellular antibiotics on her patients with morgellons along with a million other tests and what not to see whats wrong internally. But its just like all Lyme treatment in that it seems like you have to do a billion different things and then it just comes back. Maybe a lucky few remain in remission. Also seems like a genetic proclivity there.
Thank you for the info on your accutane experience. Im so glad that you didnt seem to have lasting side affects! I agree that it doesnt seem like a long term fix, but Im curious about what mechanism of action it takes that seems to help while on it. I know it does a lot more than just shrink oil glands so maybe it alters keratin production in skin? I do remember having sores right after I came off of it the first time that I was on it, but I dont believe I actually reached my cumulative dose as I was never fully clear even of acne. My new derm did wonder when I mentioned you and how you were on accutane (I told her it seemed to work while you were on it but just returned when you came off) if maybe you hadnt reached your cumulative dose? Do you know if you did? Did you break out with the new sores while still on accutane or on only when you came off? Thats why I wonder if maybe a very small maintenance dose every few days could be helpful in the long run. I dont think it gets the real root cause, but seeing that we dont know what the root cause is there doesnt seem to be many other options. I really just dont know what to do at this point. As Im sure you are, Im just so over everything and all the effort and trying this and that. I dont think there could be a more difficult condition as one has to first do everything on earth to convince those around them that what is happening is in fact real and NOT our fault; and then there is literally ZERO help or fixes for it.
I was so thankful that this new Derm did in fact recognize that its NOT normal and NOT my doing, and she was very sweet and genuine. My husband (who came with me) explained to her how difficult it was for him to get me to make yet another Derm appointment as I have had so much disappointment and been treated so badly by doctors in the past. She wrote me that she is glad I didnt give up and that she wants to see what her team can figure out. I am truly so SO very grateful for this. At the same time, I have had naturopaths that absolutely believed me and could see that this was a real and terrible condition, but they just had no clue what to do about it. They treated this and that and had me do this and that and it just never does anything. I am so hopeful for something different this time around.
Yes I agree; I would be very very curious to see if the beginning posters of these forums ever found answers or if they are still dealing with it. It seems many just disappear and never come back with updates. If I ever find a cure I will YELL it from the rooftops to help everyone out there no one should have to live like this!!
Thank you again so much for your help. Keep up the good fight! I pray that we can find a real answer and help each other out of this nightmare.
@mizweirdo thank you for the info on your accutane trial. That is informative and helpful. Also a bit disappointing that it didnt fully clear you of your sores. Do you believe that you reached your cumulative dose? I do agree its probably not the fix we need, but at this point im so desperate for a break that I may try it out. Did you have any lasting side effects?
Ugh I am so very sorry for the patronizing attitude of your derm. Man, I have certainly been there and done that. It is beyond defeating to not only have a completely horrible illness, but to have people not believe that you even have it and then even accuse you of causing said illness! I mean the audacity and condescension is just unreal! Literally insane! It is honestly one of the worst feelings in the world. Please know that you are not alone. It was a very valid thought process and request to ask for autoimmune testing. I went down that rabbit trail as well. My sister had the same test as me and she actually did test positive for lupus but does not have any sores like I do while I tested completely negative. I will absolutely post any updates, good or bad. We need to help each other out as it seems we have very few people on the outside willing to help us.
@finerfeedback I definitely wasn't anywhere near my cumulative dose - they started me on the lowest dose, 10mg a day, and the dryness was obliterating my (non-affected) skin, particularly around my lips and fingertips. My body did adjust somewhat after a while, but it was a pain trying to keep the skin moisturized enough constantly; I must have been applying lip balm 50 times a day. I switched to 10mg every other day just as a sort of "maintenance", which seemed like an okay compromise - the dryness wasn't as bad, and my lesions were kept more or less under control (although they never fully went away, there was always one or two popping up here and there). After a while I decided to stop taking it because for one thing it's a little pricey for me, and for another I'd decided my skin was as good as it was going to get. However, I'd been experiencing a ton of stress on and off throughout the last 3 years, which of course came out through my skin, and triggered a lot of the OCD picking which naturally exacerbated the problem. And after going through a really bad breakup close to a year ago, the number of plugs/lesions exploded (stress) and I completely and utterly demolished my skin due to excessive the picking and digging because of my poor mental state (a broken heart), which was the worst it's ever been. This of course resulted in some secondary problems (the bacterial infection) and it snowballed from there. That's when I went back on the Accutane for a while, saw this new dermatologist, and got a course of antibiotics to clear up the infection.
Unfortunately, I have a few things working against me - one is the fact that I'm right in the thick of perimenopause, which is WREAKING HAVOC on me biologically, physiologically, mentally, everything. Which makes it EXTREMELY DIFFICULT to parse symptoms, because is it peri, or is it an infection, or is it autoimmune, or or or etc etc etc.
The other thing working against me is the fact that I DO pick. I DO dig at the sores. 😞 It's a mental illness that I've been professionally diagnosed with, a psychological trauma response that I simply cannot seem to kick entirely. It's a lot better than it used to be, but with these awful plugs that are UNBEARABLY ITCHY sometimes, right down to the bone it seems...like, how am I supposed to ignore that? For so long I was convinced that I was the problem, I was the one causing this skin condition myself, because that's what I've been told. I've been carrying so much shame about it. But when I started REALLY paying close attention to what was happening inside my skin, I realized that there actually is an underlying skin condition going on here... But no one believes me. And I can't convince anyone that this is the case, because I've always been honest and up front about my dermatillomania.
I'm actually thinking of just biting the bullet and going through all the BS to get my Accutane Rx back up and running, because I'm out of ideas and out of options. And I'm tired of looking in the mirror and seeing...this. Every day.
@finerfeedback I was wondering if you could tell me more about that Paragon supplement you said you're taking? Is that the name of the brand or the name of the supplement itself?
I'm also interested in the other one you mentioned, the Chinese herb blend.
22 different doctors, wow! I applaud you for still not giving up! I'm also impressed as to how much work you've put into combating this from all angles with all the various tests! This is extremely helpful information. It seems like quite a few people who have this also have Lyme - I personally have not been tested. Maybe there is some correlation there, although if I remember correctly, some people on here tested negative? It's interesting that Berberine helped for about 2.5 months, although it's not saying much when it comes to determining a cause since berberine is anti-inflammatory and also has antibacterial, antifungal, antiparasitic, and antiviral properties. I understand what you mean regarding "general health principles", but I was literally in the best shape of my life when I had my first multiple-sore eruption overnight (my initial ~2 sores were single lesions). I was going to the gym regularly, eating clean (for the most part), but stressed and probably sleep deprived.
I know what you mean regarding make-up. I noticed that the make-up can dry it out & make it seem "better" at least temporarily.I'm happy to hear you were in touch with Courtney Day & ran all of this past her as well. I do agree that long term antibiotics aren't a good idea - it's simply putting a bandaid on the problem and ultimately leads to dysbiosis. I really feel for the Morgellon's patients, and unfortunately it all feels way too familiar.
I started Accutane ~July 2024 and stopped June 2025, so I was on it for almost a year. The end of June 2025 (when I wrote here), I was still on Accutane, and I had 2 new sores appear on my face overnight after a day in the sun. After those spots appeared, I stopped taking Accutane shortly after. I didn't reach my cumulative dose because I wasn't regularly taking full doses due to the side effects. I could handle the dry skin, but I simply could not function normally due to the fatigue and once I got off it completely I realized that it wasn't only making me tired, but depressed. It was hard for me to notice how it impacted my mood because I'm not exactly a ball of joy in general due to this condition, however it's clear now Accutane was definitely making it worse. I can understand new sores popping up 4, even 6 months into treatment, but to have new lesions appear a year in?I think it ultimately depends on how you are able to deal with side effects as to whether or not you should go on it again. If you're going to be be consistent with taking the pills, and reach your cumulative dose, then maybe it's worth a try since neither one of us reached the cumulative dose previously. I personally cannot put in the effort to try Accutane again at this point in my life - regular doctor visits, pharmacy issues, iPledge, scheduling life around pills & making sure I'm taking them with enough fat for adequate absorption, drinking gallons of water, etc., nor can I deal with the debilitating side effects (fatigue, headache, flu-like feeling 24/7, bone pain, and overall low mood).
I'm really happy you brought up all the testing you've had done. It does eliminate a lot of potential causes. Do you recall when you had your first lesion ever appear? Do you remember what your lifestyle/diet was like then? Does anything specific stand out to you during that time? I previously considered that there could be an environmental cause to this (like mold) because my first lesion ever appeared ~1 month after I moved into a new place. However, I only lived there ~1 year, and things actually got worse after I moved out. The first time I noticed this was a real issue and not just acne was probably close to a year after my first "stubborn pimple" when I woke up and overnight multiple of these appeared on my neck. I always try to think about what I was consuming back then, what my life was like. I can't think of much other than remembering I was stressed. The only other thing that comes to mind is that I was eating Barebells protein bars (if we're thinking the GMO route) as well as some other protein bars since I was always on the go. Aside from that, I also used nicotine gum which contains aspartame. I'm just brainstorming here.
Regarding the Paragon supplement, are you referring to Immune System D-tox with Nattokinase, Bromelain, and Curcumin?
Thank you for always replying. I think it's great to discuss this to figure out what we all may have in common. There has to be a reason why we suddenly woke up dealing with this condition. Wishing you all the best & keeping my fingers crossed extra tight regarding this new dermatologist! xx
- hey gang, this was the only page I found that gave an exact description of what was happening to my face and back. I read through tons of these posts then ran each infection it could be through the pictures and descriptions of each possible cause and what mine seems to be a fungal infection from candida which is kinda lame because I'm a man in his late 30's and I essentially have a yeast infection on my face😳 lol. This is just me, I am in no way telling you this what you have. I've been taking epson salt/baking soda baths, avoiding excessive sweating and using an atheletes foot cream with clotrimazole on the affected areas. It seems to be helping so I'm pretty relieved. My heart goes out to the people going through it with worse stuff✊. ...but the main info I wanted to share is about the white plugs. When I first saw them in my skin I assumed it was acne and like a lot of you my first thought was to get every single one out so it'll heal. I did this for 2 months and it just wouldn't go away. Till I realized it was a fungal infection. From what I've read and from my own skin I think there are 3 different white things to the sores
- The "large cylinder plugs" (that one that bleeds when you finally get it lol. I believe those are infected hair follicles and it bleeds because those are attached to your skin so those are where you get the hole looking scar, because you've pretty much just pulled a nice deep cylindrical piece of my skin out. So I use soap with salacylic acid which helps clean/break down the stuff in the follicle.
- The "smaller seed like plugs with the little tail". I'm pretty certain those are sebum/keratin plugs. I'm not sure the difference besides what they're made up of. The salacylic acid is good for the same reasons. Ill take a nice long bath and they seem to come to the surface some with each bath and some just wipe away. They don't bleed because their not attached to your skin. Your body wants to push them out but it's gonna need your help: fungal creams, regular washing, meds, etc.
- The "weird tiny icicle things" attached to the bottom of the scab. If you're like me you've kept pulling the scabs off hoping that oxygen will help it heal and assuming the icicles are just white heads being pulled out like with nose strips and it's a good thing. No, those I guess are called "granulated tissue" and it's your body trying to heal. So those are the start of the skin trying to regrow. Do not pull off the scab! The infection likes when you pull the scab because if it bleeds it's just another opening in the skin for it to climb around. Hence why the sore just keeps getting bigger. It infects one spot, becomes a scab, I pull the scab off and the edges become vulnerable and it scabs over larger. I'm not a doctor, I'm sure the actual working of our skin is more complex, but this is what I learned online and hope that if you can relate to that first post than maybe this can help. ...and as I've told many people over the last couple months "no I'm not doing meth, and no I didn't get it in prison" lol
@mizweirdo Please know that this disease is NOT YOUR FAULT. I do not have dermatillomania, but I have had regular acne since I was a young child of 12. Because of my acne, this other disease was always dismissed and ignored and I myself didnt understand that it was separate until I was in college. It was then that I realized that this was NOT normal acne and something weird was going on. But no doctor would listen to me and just lumped it all together under the label acne. These sores WILL NOT HEAL unless you get the plugs and junk out. I have left them for SO long hoping they could heal on their own because as we all know, its exhausting and draining to dig this crap out of our skin. But first off, the pain gets to the point sometimes where you cannot bear it and it needs to come out. I always explain it as having many pieces of glass or splinters in one spot of the skin the pain is unreal until they come out. I have also let some heal where the skin will try to heal over it, and it sort of does, but if there is junk still in there then it will just erupt again because the skin CANNOT heal with this stuff in it. Its like trying to heal skin with splinters in it it may cover over but can never be right until the foreign object is removed. I believe that our skin is actually creating this matter, and it is attached to the skin, but it still recognizes it as foreign which is why it swells, inflames, and hurts so badly. The skin wants it out but it cannot push it out because it is attached. Its honestly so so awful. Please dont let anyone make you feel like this is your fault or your doing. I blamed myself for so long and had so many telling me that I was scarring up my skin and that I was causing this. It is so so wrong for people to do this to us. Why is it that I can leave my cystic acne alone and let it heal on its own? Because it WILL eventually heal. But these sores WILL NOT. Its so beyond frustrating trying to explain this to people. Perhaps if you go to a new doctor, dont tell them about the dermatillomania. Even though that may be true for you, it will make them completely prejudiced against you and they will not listen or acknowledge the reality of what is happening to your skin. And yes, very stressful times add fuel to the fire so much. Im so very sorry about your breakup. I do believe that the body can break down and pathogens that it was holding at bay can take over after extremely stressful events. I recognized the sores for the first time in college, but I may have had them all throughout junior high and high school. I was on constant antibiotics during this time for acne so its possible it kept it at bay? But after college, it got progressively worse until an EXTREMELY stressful three years of my life (my first daughter had three open heart surgeries in the first three years of her life). Right after the completion of her third surgery, my skin absolutely blew up with these sores and has been just horrible ever since.
As for the supplements, Im not sure if they allow links here but I will try. The Paragon one is not a supplement really but multiple antiparasitics combined. It is from Mahoney supplements in England:
[Edited link out]
The Chinese herbs recommended by Dr. Day are from the Healing Hut and I believe that you must make an account before ordering (its free, you just have to sign in first).
[Edited link out]
These are definitely not a cure but I did notice some improvement with them.
@skinshit Thank you so much for all of the info its definitely helpful to compare notes. I put links above to the Paragon supplement as well as the Chinese herbs. I hope they help someone out even a little.
That is definitely strange that you had more sores come when you were about 9 months into accutane. Perhaps its like so many other things; that it works for a bit but then the pathogen or whatever it is finds a way to overcome it eventually. I would be curious to know about Lyme in others as well. But as far as Im aware, Igenix is the only reliable testing for it as it often comes up wrong with typical western blot or whatever test regular docs use. Igenix is expensive about $1,000 out of pocket if I remember correctly, so it is difficult for many to get legit testing. I recall reading a study on Morgellons where not all Lyme patients had Morgellons sores, but 100% of the patients they tested in this study with Morgellons sores had Lyme. Something to consider.
As for what was happening when I first noticed the sores, I posted above how I may have even had them since I was a child (Im 41 now), but I dont remember noticing them until college because of always dealing with acne. I didnt know how to distinguish the differences between the two until college. As mentioned above, after my daughters open heart surgeries my face EXPLODED with sores and has never been the same. I also microneedled my skin once during this time frame to help scarring, and its possible I spread it all over or something, I dont know. I would NOT recommend microneedling aside from individual small spots with this condition. I did have the bit of relief during my second pregnancy and nursing where I was totally in remission, and then also a month or two here and there, but it always comes back. I can tell the second it comes back as the sores have a distinct pain so different from acne and of course begin the process of not healing and producing the plugs and clotting junk. I have no idea why I have never had them anywhere else but my face even though I have had acne on my chest and back but never sores. I wish like heck mine were somewhere that I could put clothes overtop. I wonder how many people on this forum have regular acne as well, or if Im just one of the lucky ones who has TWO chronic skin conditions on my face? Anyways, seems like the antifungal route is working for some such as the gentleman above. I have never had success with topical or herbal oral antifungals. I have not taken oral antifungal medication though. I truly do feel that there is a genetic factor to this disease, but others who have had it a shorter time period than me would probably have more luck putting it back into remission. Ugh I just dont know!
@dar-wins Hey there! Are you still in remission? Do you think the treatments you have been given for your MODY is what has helped your skin? What exactly are those treatments? I believe last I heard, you were not taking vacyclovir anymore and were not eating sugar. Were you or are you taking or doing anything else? It seems that conditions like diabetes could contribute to the lack of healing here, but I wonder if it is the root cause. For example, I know people who have leishmaniasis (this is not that, but just for an example) who also have diabetes will have a more difficult time ridding their body of the parasite. So its a contributing factor but not the root cause overall. What are you currently thinking and how have you been doing?
I have dealt with this issue for 25 years and still dont know what it is for sure. One hypothesis is Dermatitis herpetiformis (DH) caused by gluten intolerance. When I avoid gluten, I dont get them. They start as a very itchy spot that appears a few days after eating gluten. Its not immediate so it took me years to make the association. They started on my scalp and face, then elbows, wrists, knees and ankles when I was eating gluten without restraint. I still get small ones periodically because I need a donut every once in a while, lol. There is also a lot of hidden gluten so its hard to know if you are 100% avoiding it. The best way I have found to get them to heal is use a hairdryer on them. The heat reduces the itching so it feels good and appears to dry them out and they stop weeping. It takes several times to see progress. I think this also helps with the deep infection that Neosporin, etc. cant reach. (I found this is also useful for mosquito bites!). Another hypothesis is lack of Vitamin D. I noticed once that sunlight helps them heal and was recently diagnosed with a Vitamin D deficiency. Ive never before been tested for that so I could have been deficient all these years.
@skinshit Thank you so much for all of the info its definitely helpful to compare notes. I put links above to the Paragon supplement as well as the Chinese herbs. I hope they help someone out even a little.
That is definitely strange that you had more sores come when you were about 9 months into accutane. Perhaps its like so many other things; that it works for a bit but then the pathogen or whatever it is finds a way to overcome it eventually. I would be curious to know about Lyme in others as well. But as far as Im aware, Igenix is the only reliable testing for it as it often comes up wrong with typical western blot or whatever test regular docs use. Igenix is expensive about $1,000 out of pocket if I remember correctly, so it is difficult for many to get legit testing. I recall reading a study on Morgellons where not all Lyme patients had Morgellons sores, but 100% of the patients they tested in this study with Morgellons sores had Lyme. Something to consider.
As for what was happening when I first noticed the sores, I posted above how I may have even had them since I was a child (Im 41 now), but I dont remember noticing them until college because of always dealing with acne. I didnt know how to distinguish the differences between the two until college. As mentioned above, after my daughters open heart surgeries my face EXPLODED with sores and has never been the same. I also microneedled my skin once during this time frame to help scarring, and its possible I spread it all over or something, I dont know. I would NOT recommend microneedling aside from individual small spots with this condition. I did have the bit of relief during my second pregnancy and nursing where I was totally in remission, and then also a month or two here and there, but it always comes back. I can tell the second it comes back as the sores have a distinct pain so different from acne and of course begin the process of not healing and producing the plugs and clotting junk. I have no idea why I have never had them anywhere else but my face even though I have had acne on my chest and back but never sores. I wish like heck mine were somewhere that I could put clothes overtop. I wonder how many people on this forum have regular acne as well, or if Im just one of the lucky ones who has TWO chronic skin conditions on my face? Anyways, seems like the antifungal route is working for some such as the gentleman above. I have never had success with topical or herbal oral antifungals. I have not taken oral antifungal medication though. I truly do feel that there is a genetic factor to this disease, but others who have had it a shorter time period than me would probably have more luck putting it back into remission. Ugh I just dont know!
I have had this since I was a kid and I'm 41. I always had acne as well, I'm now understanding I never really had acne, whatever this is- that was the beginning. I thought at one point I was getting back acne, then it spread down my arms etc , fast forward to years later I started getting sores like a meth head! About a year ago is when I started getting lines in my skin? Then strands of hairs would come out. I'm still don't know exactly what is happening, I am finally healing after 30 years of this hell
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. ☹️
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. ☹️
When I looked that up with Chat GPT it said that Demodex can cause long hairs under the skin. Any chance anyone has had a skin scraping? I have seen a lot of people say they have had punch biopsies, but not skin scrapings.
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.