@cosmoskinanswer Sure, the pills are "Clindamycin" (300mg twice a day for a week), and the topical is "Mupirocin ointment 2%", to be applied to affected areas up to 3x daily for no more than 10 days.

Like I said, they're just antibiotics to help with the bacterial infection brought on from the picking/digging. There are two spots that don't seem to like the topical much; the spot on my forehead that I mentioned has been routinely cleaned, ointment applied, and dressed with a fresh bandaid at least twice a day every day, but it just doesn't want to heal. It still looks just the way it did when I started.

@mizweirdo

Thank you so much for the information.I was on Clindamycin before, but topical, still a friend told me oral did really good on him with acne, and I have to say it really helped me clear my skin for a while. When I had that cystic-type breakout with mixed flares, before the plugs, it worked quite a lot for me, so I truly hope it works well for you too.🙏

I also tried Mupirocin, and it did help with inflammation for a period of time, but to be honest, it didnt really solve the problem at its root. Later, I was diagnosed with prurigo vulgaris, which is why I asked you what medications you were prescribed. I havent shared my full experience with doctors because its a long story, and honestly, most of us havent had much luck with them. Ive come to see it as more of a situation where doctors just arent really prepared for what were dealing with, and I dont want to waste energy holding resentment toward them.

In my case, Ive had several different diagnoses, with prurigo vulgaris being the latest. I do think it may be part of the picture, but probably not the whole story. Like you mentioned, there are some things that match the condition: the skin irritation is real, and that irritation itself can create symptoms like pruritus (itching). But the bigger question is what is causing it? Whether its something external, environmental, or an internal trigger like fungal activity its hard to know.

From my experience, I even spent about four months avoiding to touch the false skin, but the hardness of the skin and the false skin layer never went away. I hope your case turns out differently, but for me, I eventually had no choice but to extract it manually from time to time while also reminding myself not to overdo it all in one day or week.

My test results came back and I for sure have a autoimmune, not sure which one yet. Im waiting on the rheumatologist doctor, I will keep everyone updated on that! My skin is so so much better! I been working really hard on myself and doing these parasite cleanses! I can definitely feel and see the results! Every time I feel like shit I take a baking soda bath, and it takes shit out of my skin.

Posted by: @Cosmoskinanswer

@25years HI, WHAT I KNOW ABOUT FEELING CRAVINGS THINGS THAT ARE NOT FOOD, LIKE WHAT YOU MENTION , ARE LINKED TO PARASITES, YOU SHOULD GET TEST FOR THAT, OR START USING A SAFE PROTOCOL FOR PARASITES

Yes I know for a fact it's parasites! I hate admitting it as I'm so scared of spiders and bugs! I look better from a year ago! I can't get a doctor to test me or treat me! Even on this page people call me crazy for saying it! It's beyond frustrating! I been working so hard on myself for so long and I'm still not better! I can't sleep, I can't work, I can't bring my kids to fun places! Im so over this, I wish I knew of a place that would at least try and help me!

Posted by: @Cosmoskinanswer

Hello everyone,
This is my first time writing here. Ill be sharing this post in the two forums Ive found. This is my personal experience.

After reading your stories, I want to highlight something important: individuality. Even though we probably share the same condition, the symptoms and the way these plugs show up can be slightly different for each person.

For example, Ive read that many people experience them all over the body. In my case, they only appeared on my face for six years, and just recently one tried to come out on my right ankle, but it didnt evolve. The last ones on my face are now drying upthanks to God and to all the changes Ive made.

I know this condition could take pages and pages to explain, but I want to summarize what has been most important for me: how I describe it, what made it worse, and what made it better.

How I describe it

Ive learned that this condition, like many illnesses, is multifactorial. It develops when several factors coincide and create the perfect environment for opportunistic organisms to grow: infections, bacteria, parasites, fungi, biofilms, etc. In some cases, there may be demodex, fungal infection, mold, or internal parasites or maybe not. Thats why some treatments work for a while and then stop working: we need to address it as a whole (mind, skin, stomach, intestine, nervous system).

1. The mind: the body often expresses what we havent released emotionally. For me, this has meant working on self-love, self-worth, forgiveness, and letting go of resentment. When emotions heal, the body responds too.
2. The skin: I used nystatin, miconazole, tree tea compresses, ivermectin paste, and even MediHoney. They didnt always work, but at times they helped extract those white fibers (which seem like fibrin). I realized that even though creams helped, it was necessary to remove them manually. I dont consider it picking, because I dont do it impulsively, but out of necessity. Still, doctors interpret it as picking, since this condition is unknown to them.

The first time, I injured myself badly trying to reach the root and ended up with three hypertrophic scars. With the last three sores, Ive been more patient: I only remove what is visible on the surface. The healing has been slower, but after eight months the sores are flatter. I discovered that propolis dries them out and brings the dead skin to the surface. I also take it orally, as recommended by Medical Medium in the Shock Therapies.

I also prepare chamomile, tree tea, and propolis infusions (not too hot) and then apply cold compresses.

And this is how I describe what happens with the skin: what forms in these sores is not real skin, but what I call false skin. Healthy skin is completely differentno matter how much you scratch it, it wont break because its firm and resistant.

The affected skin, however, weakens because of whatever is underneath (organisms, disordered fibrin, etc.) and starts forming a layer that looks strong but isnt. It sinks in easily, lifts off like gelatin, and even though it seems to cover, it doesnt protect. Its as if the body produces fibrin abnormally: strong enough to feel tough, but not strong enough to behave like real skin. Thats why it eventually needs to be removedbecause it isnt true skin.

Doctors often call this fibrin caused by picking, but we know it shows up even without touching it. And thats the frustrating part: if I go to the doctor with false skin, they tell me not to touch it; if I go with open skin, they tell me I caused it myself. And as someone in the forum once said: if you mention parasites, theyll think youre crazy; the most you can say is demodex, and even then, theyll deny it.

3. The stomach: it must be acidic to kill bacteria and parasites during digestion before they reach the intestine.
4. The intestine: I believe this is the most important part. My blood lab and many others like tyroids tests came out fine, but I suspect I might have bacterial overgrowth (SIBO), dysbiosis, or leaky gut. My lifestyle and diet for many years made this very possible. so I'will be seeing a GI doctor soon to these testing
5. The nervous system: its directly connected to the skin. Stress, pain, and emotions affect it, and the skin reacts immediately. Learning to calm my nervous system has been essential.

 

What made it worse

• Covid, measles (i got both)
• Doxycycline: the first time I took it for one month, stopped, and had a massive cystic acne-like breakout. The second time, after three months, I caught a virus and ended up with an even worse breakout.
• Oral cortisone: it suppresses the immune system and allows other organisms to grow.
• Gluten and ultra-processed foods (pizza, donuts).
• Alcohol.
• Seeds.
• More than one hour of sun exposure.
• Living in a mold-contaminated house (very important trigger).
• Taking too many supplements at once (without order, they didnt work well in combination).

What made it better

Vitamins and minerals:

• Vitamin C
• Vitamin D
• B Complex
• Folate
• BioQuercetin
• Iodine
• Zinc with selenium
• Magnesium

Amino acids and related compounds:

• L-glutamine
• Arginine
• Lysine (occasionally)
• Choline with inositol
• MSM

Immune / antiviral / antibacterial support:

• Lactoferrin
• Monolaurin (Palmara Health)
• Andrographis (Natural Cure Labs)
• Uri Alive (Holistic Health Labs)
• Propolis
• Goldenseal
• Advanced Turmeric (Mercola)
• Ginger powder

Enzymes:

• Serrapeptase
• Lumbrokinase
• Digestive enzymes and Betaine HCL

Other supplements:

• Methylene Blue (3x per week)
• Zeolite
• Spirulina
• Beef liver capsules
• Fermented broccoli capsules
• Probiotics and prebiotics

Herbal tinctures and blends:

• Wormwood + walnut
• Poke root and burdock

 

Books that helped me

• Medical Medium: Brain Saver Protocols
• Louise Hay: You Can Heal Your Life
• if you speak Spanish you can look Dr. Carlos Jaramillo in YouTube, he has helped me a Lot too in how our bodies health works.

 

Final thoughts

We need to eat right, protein, fiber, and good fats. The Right protein intake amount depending on our body weight, which plays a crucial role in maintaining the integrity of our skin, as well as healing and strengthening our immune System. A strong immune System is our best friend in this process. Please don't stop eating, or fasting for many days, that will weaken your immune System too

Thank you allyour stories have inspired and supported me on this journey. Thats why I also wanted to share my own experience.

I am a full-time caregiver for my mom, which has been both a blessing and a challenge. I know many of you have to work or go out, and I deeply admire you. This situation does not define us. We are brave and beautiful, and Im sure we will get better if we keep taking small steps.

If anyone has questions, Im here and willing to listen.

 

That false skin is crazy! I didn't realize it until I started doing the athletic tape! My skin is soooooo much lighter now! Once I got thru layers and layers and layers is when I started having these lines on me, then little to long hairs coming out of my skin?! They are not my hairs - they are parasites, once the hairs come out from that area I don't get anymore sores. I believe the sores are their nest, the plugs are the eggs/babies. That's why when u remove the plugs they just come back. And yes! Get your skin dry dry!!!! Once everything is removed from that area I had that area peeling like a sunburn peel- but different, like that liquid acid that comes with the sores dry up and the infection dries up and comes out! Im still working on myself, I look so much better than a year ago! All thanks to athletic tape, wormwood pills and charcoal pills (use as a binder)

@25years what do you do for parasite cleanse??

Posted by: @Jen M

@25years what do you do for parasite cleanse??

The eggs hatch every full moon, I eat papaya seeds the night before (so when midnight happens - the magic starts). You have to eat the seeds whole, they have like a magnet to the parasites. I also take a bath every night with baking soda and Epson salt (you will literally see them in the tub), I clean the tub out while the water drains and rinse in the shower. The pills are wormwood and charcoal (the charcoal is a binder which they hate). I seen a herbalist recently and got a wormwood tea ( that is gross but I'm making myself drink it lol), she also gave me some drops for under my tongue that taste horrible. The only sugar I have is with my coffee because I can't give that up. I sleep on a long towel over my sheets so I can replace it daily. I change clothes 2-3x daily. I change the athletic tape on any area over and over as needed! Sometimes they get stuck in the tape, as soon as they come out the itch is gone. They are the itch you can never starch! The tape for some reason prevents the plugs from growing and expanding, if you get it quick enough you will not get a sore. I think it suffocates them, but I'm not sure why it works. If you need a moisturizer only use Vaseline!!!!! They HATE Vaseline, you may first start to notice tiny black dots when you rub the Vaseline (those are babies)

Posted by: @25years

Posted by: @Jen M

@25years what do you do for parasite cleanse??

The eggs hatch every full moon, I eat papaya seeds the night before (so when midnight happens - the magic starts). You have to eat the seeds whole, they have like a magnet to the parasites. I also take a bath every night with baking soda and Epson salt (you will literally see them in the tub), I clean the tub out while the water drains and rinse in the shower. The pills are wormwood and charcoal (the charcoal is a binder which they hate). I seen a herbalist recently and got a wormwood tea ( that is gross but I'm making myself drink it lol), she also gave me some drops for under my tongue that taste horrible. The only sugar I have is with my coffee because I can't give that up. I sleep on a long towel over my sheets so I can replace it daily. I change clothes 2-3x daily. I change the athletic tape on any area over and over as needed! Sometimes they get stuck in the tape, as soon as they come out the itch is gone. They are the itch you can never starch! The tape for some reason prevents the plugs from growing and expanding, if you get it quick enough you will not get a sore. I think it suffocates them, but I'm not sure why it works. If you need a moisturizer only use Vaseline!!!!! They HATE Vaseline, you may first start to notice tiny black dots when you rub the Vaseline (those are babies)

I also forgot a special ingredient, peroxide!!!! Take a peroxide bath, peroxide with baking soda is magic!

I have had this for years and it came and went and one time it was supposedly fungal, and the next time they said it was bacterial, I had many diagnosis and yes they were somewhat right because the lesions would have secondary issues. Every time I thought I found a cure and a remedy it wouldnt work the next time. I came here to say this if you only have this happen once then the thing that they told you might be correct, but if this is recurring and it spreads, and it takes forever to heal, and is raised around the edges please go look up discoid lupus. I had it for years before full blown lupus. It doesnt mean you will get systemic Lupus. It could mean that you could stop having the skin rash if you figure out thats what it is. I wish I would have. I cannot tell you the amount of doctor visits and frustration I had for years. When I looked up discoid Lupus I came up on a pic and clicked into this site. I saw all these stories and pics and it broke my heart. I know some of these posts are old but maybe youll come back and check the next time you get a flare. If you get them after being in the sun ( I didnt but its common) or after being sick or stressed, If you have other autoimmune issues, you might be having flares. The first thing I noticed that helped keep them at bay was regular use of topical retinol. I still didnt know I had it then but I went over a year with no flares. If your not sure and not ready to go to the doctor yet you should see some improvement with allergy meds because it down regulates your immune system but you dont want to stay on them forever. Its just a test to see if its immune related. Like someone else said above if theyre telling you it is fungal, or Demodex this might be true, but these things are normally found on skin and dont cause issues on healthy skin, so while using topical ointments for which ever it is might show improvement in the short term, the underlying issue is likely an autoimmune condition of some kind. Maybe not Lupus, maybe just leaky gut or Sibo, Or something temporary diet restrictions can fix. For me I tried everything, I fasted, I limited food to barely anything ,and nothing worked. If I had stress or an illness, an operation, or antibiotics for anything it was a vicious cycle. I started to notice digestive issues would be the sign that it was coming. Severe constipation, cant go for days, then headache, then skin issues, then fatigue and achiness. It always that way though or at least I dont remember it. Maybe the other symptoms were mild and I didnt notice them or maybe I just didnt correlate that the headaches were coming in conjunction with them. The last symptom was the red cheek flushing which was misdiagnosed as rosacea. It was the lupus butterfly rash. I went for years and years before I got that. It all started with discoid Lupus. Its circular, it doesnt close up or heal in the normal amount of time such a shallow spot should. Its lighter almost yellowy looking in the middle. The edges are raised and thicker and red. in the beginning the middle is watery. It often stays open and unhealed to the point where you get secondary issues like fungus, demodex, and bacterial overgrowth. If you get these it can take even longer and have the clear bumps in the middle or get a crusty scab. Most of the ones in the pictures online are already drying out so you may think that its different. I just wanted to come here and say this because Im a little mad that not one of the many doctors I went to and paid a fortune could ever figure this out. And because when I saw these stories I thought that possiblymaybe if even one of you have this I want it to end for you now. Im so happy I dont live with the face rashes anymore. I remember being depressed and not wanting to leave the house. When the flares got bad I wouldnt leave for days. I ordered food in. Had everything delivered and never saw the light of day. It caused severe depression at times. The story that got me. The most was the lady that said I used to be pretty Baby girl you are still beautiful and Im praying for you and all of you to find a solution. Living with Lupus for me is still better than living with lesions and depression.

@skinbunny Thank you so much for your post. Did your lupus sores have white stretchy plugs in the center that needed to be removed in order for healing to occur? Also, what is the remedy you found to finally rid yourself of the wretched sores? I rarely ever leave the house anymore and my face is permanently disfigured because of the scars. It has ruined my whole life its an absolute nightmare. I have two precious daughters and a husband to care for and it affects every aspect of my life. Any help is much appreciated. I had an in depth autoimmune test recently and it came up negative for everything.

Hey Allll,

Scrub/Dermatology Reconstructive Plastic/Skin Cancer/MOHS Specialist here. I have answers.

I have also been dealing with this for a couple years now. I had never seen anything like this in clinic before even after doing multiple years in the field. My Grandfather was a Dermatologist. I have seen it all..except for my own case and what everyone here is describing. Finally I DO have an answer for all of us.

My Face especially nose has been torn apart by these little white things. I can tell you exactly what has happened. I am 41 y/o.

This is a long progressing issue. 15 yrs old I start squeezing my nose because white stuff comes out of my pores. I have a bit of ocd and self conscious so always wanted skin to be perfect. I stretched out my pores over many years doing this. No problem. I do love the sun and I have had a lot of it. Also I have been diagnosed with Rosacea. Yes, dermodex mites. Ok so these mites normally wouldnt get into my pores and stay there right? Well since I stretched my pores out here they come. Along the way they are little fibers from clothing and whatever else on my skin. These mites have an exoskeleton like a shrimp. So you can imagine they are gonna drag everything in their pathway into that big pore. Well now guess what. They are gonna eat until they explode because they dont have an anus. So now guess what comes next. They bacterial issue. On top of that, the ones of us who have the yeast and/or fungal stuff get to have a nice white waxy plaque build up all over our skin. This traps in whatever was there. The film makes the perfect storm and here we go. Time passes and we go to the doctor, we try to treat with anything that will blast infection, iodine, antibiotics, salt, vinegar, Topicals, pills, fluconazole pills -a LOT of them because I thought for a sec they actually worked. BUT the yeast aspect comes right back. The bacterial aspect comes right back. Then you go back to the doctor and he says hey you have sebaceous hyperplasia. Well that just doesnt make sense BECAUSE WHY are those things in the center and why do they feel like glass and ulcerate and leak fluid and NEVER go away until we pick every last one out.

THIS IS WHAT I DID: I listened to my doctor after picking the mite skeletons out of my pores for 2 years. I finally decided to give my Rx for the Sebaceous Hyperplasia a try even though I knew this wouldnt work either. Im using FLUOROURACIL USP, 5% Cream. Ive been doing this for 15 days now. Ive been wearing a mask because I have 2 jobs and work 80 hours a week. I get everyone asking me WTF about the mask and do I have covid. Literally get in a fight with a patient about why wont I take off my mask. THIS you MUST do. Go get that cream RX everyone. This is the first time Ive seen under that thick plaque that was ALL OVER my entire NOSE and becoming like real old man like rosacea. It is breaking up the skin around the ulcers. I can see under the plaques now and I have all fresh skin BUT literally almost every pore has the dermodex exoskeleton/the morgellons fibers and they are all inside the hard white sharp balls. I picked forever so I cant say dont do it but if you do you need to get tweezers to PLUCK out the dermodex exoskeleton because their little shrimp claws are what is still holding on in there. This morning after I showered and more plaques came off I saw just how many were there. I would never be able to get them all by picking. So Im going to continue to use the Chemotherapy Cream FLUOROURACIL USP, 5% Cream. I might do it for another couple months. I will also be getting UREA to DISSOLVE the keratin trapped around the dead mite shells very soon. I think that last step will be the most important in treatment or else my skin will probably continue to grow up around all the little hard things. I have been taking a pic every single day of my treatment for all 37 pages of us.

Everyone remember this is hard to diagnose because its a perfect storm of a hand full of smaller past issues. If every single issue is not treated then Im reading that the plaques will come right back. I think straight tea tree oil will be the iceing on the cake. After my skpores are back to normal size like when I was 14 then I will use tea tree oil to repel dermodex mites. But listen!!! The tea tree oil wont help the mites already in your pores. You have to get that waxy film off first and its thicker than you think. Ill take a pic after after I get out of the shower to show everyone just how bad it looks. Underneath. Its a battle. Ive done my reasearch. Ive worked the field. THIS IS UNCCOMMON. Ive never even seen a case myself of it. I thought I had Lyme, Lupus, Parasites (which ya dermodex are a part of it.) Imagine a huge dead shrimp in your pore and he cant poop because he has no butt. Whats going to happen to that pore when he eats so much he explodes. Its pretty much like we all have human MANGE. If you have animals go ahead and get some kind of thing to spray on your sheets and pillowcase to repel the mites because yes they are everywhere and pretty much normal but we have issues. I was actually Dx with a dust mite allergy when I was very young so probably also an immune response plays into this.

I wanted to mention that I too had great skin during my pregnancy when I was 25. It was the hormones. I think it has a lot to do with the androgens we produce creating the oil glands to become overactive.

NEED KETOCONAZOLE 2% shampoo for a face wash 2x per day as well. This is very important.

Soaking in Salts also really helps to draw out the dermodex slime. Apple Cider Vinegar to drop the skins PH.

Chemotherapy cream!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ill be taking a pic every day and Ill take one in the AM after my shower to show you just how many are under the thick skin. Check Back!!

@teeneybeans thank you for the information. I am very glad that the cream seems to be helping you! There are a few things that dont quite make sense though concerning demodex. First, demodex are microscopic. You simply cannot see them with the naked eye. Second, demidicosis is a somewhat common thing (yes, basically human mange) and it can be very successfully treated with oral and topical ivermectin. I can attest that both oral and topical ivermectin do absolutely nothing for this condition. Yes demodex mites live in pores but again you cannot see them and they do not attach in the way that these plugs do. I have looked at these things under a microscope and they are not a living organism. It has been found that these things are a combo of collagen and keratin so like a mix of skin and nails which is why they are stretchy and hard and cannot dissolve the way that normal sebum can. It makes sense if you have tons of tiny things similar to fingernail material stuck in your skin (but more stretchy because of the collagen) that they will hurt like heck and not go away unless they are physically removed. It makes sense that the cream that you are using is helping as the mechanism of action is that it targets rapidly growing skin cells. It works as an antimetabolite, slowing down cell growth and promoting cell death in abnormal skin areas. It is also used to treat actinic keratosis. Ive always thought that this is something deeply internal that is causing the skin to malfunction and form things that it was never intended to form. How long can you use the cream? Could you technically use it forever if need be or would that cause harm in the long run? I think the answer to this evil disease is something that hasnt even been discovered yet. I am hopeful that AI can be of use in the future to target what exactly is happening as doctors are completely and utterly clueless.

@finerfeedback Hi! These are all great points. I agree with you, I think we have a condition that hasn't been discovered/studied yet. How are you doing? Are you still getting new "lesions"? How are your old spots doing? Have you decided to try accutane?

My update: I've been off accutane for a few months now. The spots I had pop up after a day out in the sun are still there 🙁 I had them swabbed (not biopsied to avoid scarring) & they came back negative for bacteria, viruses and fungi. The "plugs" in them are super deep, so it's essentially waiting for them to emerge until I can pull them out & plastering my face with make-up all the time. On the plus side, I haven't had new ones appear, but it seems like it's a never-ending cycle. The current lesions eventually close, and new ones pop up like clockwork.

@skinshit Hey! Thank you for checking in. I am not doing very well at all honestly. I havent had a break from the constant sores in over a year and it is wearing on me mentally so much. I also am getting even more scarring and I feel like I dont even look human anymore. I barely go anywhere and when I do it takes me hours to load on makeup and I still cant look people in the eye because my scarring is so so bad on top of the swelling and sores. I am so humiliated and just exhausted from trying to find an answer. I have an appointment at the end of October with a derm who does conventional and holistic treatments hoping that she will be more open minded. The only reason I am going to another dermatologist (the many others I saw were so useless) is because she was recommended by a Lyme treatment center so Im hoping she can think outside of the box.

I also am still contemplating accutane for sure. Did you notice worse scarring while you were on it? I am terrified of gaining even more scars as I already look like Freddy Krueger and I know Accutane can cause scarring because of the lack of oil. Since Accutane seemed to help you, would you consider going back on it? Would you microdose it indefinitely? I know exactly what you are talking about with more sores opening up somewhere else the second the current ones are healed. I have had deeper ones that took SO long to heal and in that time frame, the rest of my skin wasnt bad. When they finally did heal, the sores just moved somewhere else and started the whole dreaded process all over again. And literally this happens within a day. Its the most depressing and defeating cycle and I sincerely empathize with you. I always say that it HAS to be active somewhere on my face at all times and I can feel it change spots. The spots that are active have a unique type of pain and of course swell, bleed, ooze clear liquid, and produce the dreaded plugs. Its crazy and horrible and Im just so sorry for all of us that have to deal with this along with all the worthless doctors and people around who dont understand and dont help even one bit.

I am not surprised that your biopsy came back negative it seems they all do. I know this can be turned off though or put in remission, but its from much deeper inside. I do not have high hopes at all for this upcoming appointment but I will keep you posted. I might do a round of accutane and simultaneously start treating hardcore for Lyme. I have done all sorts of natural, dietary, and herbal treatments in the past for Lyme but have avoided major long term heavy antibiotics. I dont want to do that but I dont know what else to do at this point.

Posted by: @MizWeirdo

Hey all,

Just wanted to provide an update:

I'm on my 6th dermatologist, and she agreed to do a bunch of testing, thank god. Out of all the derms I've been to, she's the first one to do this which I think is absolutely wild. We did blood work, a surface swab, and a biopsy of one of the sites.

The blood work came back normal; the swab came back with staph (which is kind of what I expected, seeing as how I am unfortunately a picker), and after the biopsy results came in, she gave me a tentative diagnosis of "prurigo nodularis". I look it up, and I'm not entirely convinced that this is the affliction I'm experiencing because all the descriptions and images didn't seem to match up. However, she prescribed both oral and topical antibiotics to take care of the infection first, and then once it's under control I go back for a follow up (next week) and see where we're at.

The antibiotics seem to be helping a bit; the sores have largely settled down, and I think maybe the Accutane is also helping with that (although it's wreaking havoc on the skin that IS healthy, particularly around my lips and fingernails which is unfortunate but normal for this medication). I do still have 2 or 3 spots that don't seem to be responding well to the medication though - one spot in particular (right smack in the middle of my forehead 🙄) is still producing a large cluster of these white plugs fairly regularly. I'll be pointing this out to her when I see her next week, and see what she says.

I'll post another update after my appointment.👍

@finerfeedback Hi, I wrote up this extremely long reply, but there was an error when I tried to post 😖 Will try to rewrite my initial reply as best I can - apologies if I leave anything out:

I totally empathize with you - you are not alone in feeling this way!

If you recall, I was in remission for a significant amount of time while on Accutane (9 months?). I do think it worked for some time due to how it decreases sebum production & essentially dries you out from the interior. It did not have an impact on my scarring at all (I used Aquaphor & continue to use it!). You were on Accutane in college, so you know how it can be - regular appointments, blood work, iPledge check-ins with regular pregnancy tests, issues with insurance/prescription pick-up due to a narrow window of when you can pick-up your medication, and of course, the side-effects. I experienced fatigue, flu-like symptoms, bone pain, low-mood, lack of motivation, etc. It is only now that I'm completely off the medication that I see just how much it impacted me. Would I consider going back on it? Yes and no. I haven't completely crossed it off my list as something to try again. But I think the better question is: do I regret trying it? The answer to that is no. I think it did help - I was in remission! Remember, I wasn't taking my medication as prescribed due to the side effects. There were days I wouldn't take it all all, and days I took a much smaller dosage. It is possible that my flare-up was due to my lack of medication adherence (albeit, justified due to side-effects). This begs the question: is Accutane only going to work while you're on it & cause these things to return once you're off? That is possible. However, what do you have to lose? I think it's absolutely worth a try even if it means just helping your current sores heal by getting those deeper plugs to surface. I'd personally try Accutane over long-term antibiotics as many people on here have noted that antibiotics work initially, but then cause these things to come back with a vengeance. I'm also very against disrupting our natural flora with antibiotics which only invites fungus.

I try to be optimistic when it comes to the scarring. No matter how bad your scarring is, there are so many treatments out there nowadays that can make your scars appear drastically better - lasers, chemical peels, microneedling, etc. These treatments obviously aren't cheap, and they require time, but it IS possible to fix. Unfortunately, we're not going to be able to work on scars until we figure out what is causing these sores and how to prevent new ones.

There has to be a logical explanation as to why we're experiencing these symptoms. This phenomenon of sores healing and new ones appearing within a day rings all too familiar and the dread that comes along with those days is very devastating. I was doing some more research. I stumbled upon this video on you-tube titled "No.56 Very dense and thick sebum keratin plug". It looks just like our plugs, except our plugs bleed when extracted. Is it possible that these are just deeply embedded keratin/sebum plugs? Are we perhaps pulling out inflamed hair follicles? It would also explain why the biopsies come back negative. About 1-2 years prior to my first sore, I was using way more products and tools on my face. I would use a Clarisonic for cleansing, a PMD microdermabrasion device, Bee Stunning Diamondbuff Microderm Exfoliation Tool, facials, chemical peels, face masks, etc. Now I'm wondering if decreased exfoliation/cell turn-over is what is causing these plugs to proliferate. We also try to keep our faces dry since we know these things love moisture, but what if that's what's causing increased sebum production because our skin is overcompensating?

I'm trying to look at this with some toxic positivity at this point (yes, positivity). I've tried such drastic things already that maybe a more simple regimen would do the trick. Going forward, I plan to treat these things as though they're sebum/keratin plugs, and I'll see what happens. I'm going to try to drink Spearmint tea regularly to decrease androgens, urea face cream, BHA, etc. essentially any and all treatments that combat sebum/keratin plugs.

I'm optimistic we can figure out a way to fix this if we just work together & compare notes. Let me know your thoughts. Hang in there. All the best xx

Attaching an update photo from my flare-up in June to now (visible deep plug in the center)

@prayingforanswers

Thank you for reminding me that I needed to post my follow up as I promised!

So, during my last appointment with the dermatologist, I told her that the antibiotics did seem to help the sores heal (mostly) but that the really deep ones weren't fully responding, and that the skin is still behaving the way it's always done - just raw, ugly lesions that won't heal fully no matter what. I told her that even if I didn't touch them at all and let them form a scab, it will sit like that forever and the skin under the scab won't heal. It'll just be a Forever Scab. And if the scab gets kinda puffy and squishy, then I KNOW there's at least one of those damn deep-rooted plugs forming under there again, so I pull the scab off, do my best to pluck out the core, and it starts all over again.

So, the derm gave me a Rx for a compound topical cream; she said it's a special mixture of stuff that she gives to patients with "slow-healing skin" to help promote healing. I was skeptical but of course I took it because what other choice do I have? The topical consists of:

"1% HC + 15% Zinc Oxide + 34% Petrolatum + 50% Ketod..." (This is exactly what the label says, it gets cut off due to the length of the ingredients, but I assume that last one is Ketoderm, which is an antifungal.)

So I've been using this cream on and off for a couple of weeks, and I can't really say that it's been helping much. My skin doesn't hate it and doesn't react badly to it which is a plus, but I haven't really seen any significant improvements either. The directions say to "Apply to open wounds twice a day as directed"; I was a little confused and dismayed, because as I had told the dermatologist, the wounds do eventually scab over if I keep them dry and leave them alone, but then they don't heal. So I wasn't sure - do I only apply this stuff to the "open" wounds? Or all of them?

I put it on all the spots, and the results were disappointing as I mentioned. The areas that were actually mostly healed did seem to finish healing up a little better and a little faster, but it had little to no effect on the newly scabbed-over spots and the open lesions. This is also disappointing because this jar of cream cost me close to $100, and every time I go see this derm I have to Uber there and back, which is about $40 round trip. (NB: I'm in Canada, so seeing the derm costs zero dollars but prescriptions come out of pocket and I don't have insurance because I don't have a job that offers benefits, so I pay full price for all of my prescriptions.) And friends, I am broke as a joke. I can't afford to keep spending such large amounts of money like this for stuff that doesn't help. 🙁

At the end of that last appointment where she gave me the Rx for this compound topical, I asked if I should schedule another follow up appointment and she said No, it's not really necessary, just use this cream for a few weeks/months and contact the clinic if there's any problems.

I had such high hopes for this dermatologist, and while she's definitely the best/most helpful one I've seen yet, I still have no answers.

Oh, also: regarding the Accutane, it does seem to be helping as I mentioned in my last post; the white plugs are quite fewer in number, and the ones I do still have seem to have shrunk significantly. However, I know this isn't a "cure", it's just treating the symptoms resulting from whatever this underlying condition may be. And obviously I don't want this to be a permanent "solution" because truthfully, being on Accutane kinda sucks; it's expensive and is harmful to the rest of my skin & nails etc because it's drying me out tremendously. And winter is around the corner, which means the air is going to get unbearably dry which will only exacerbate things.

I just don't know what do do anymore, and I don't know where to go from here. I am considering booking yet another appointment with this derm to tell her that her compound topical isn't really helpful, but I don't know if there's any point. She seems to not know what this condition is or what to do about it, just like the rest of us have experienced with dermatologists and doctors. 🙁

Fwiw I actually did tell her about this forum thread, and told her that tons of people are weighing in to say they are all suffering with this same affliction; I told her that everything everyone describes is precisely the same thing I am experiencing, right down to the fact that not a single Dr or derm has been able to help. And of course, she didn't really take it seriously at all, since it smacks of "I did my own research online" which doctors hate; this is honestly completely understandable, because obviously there is A LOT of misinformation out there and, generally speaking, the types of people who believe absolutely anything and everything they read online only make the Dr's job more difficult, so it makes sense that as soon as a patient says "I read xyz online and this is what it said!" the doctor will automatically reject it.

So I dunno.

I'm including a couple of photos I took just now, so you can see and compare to the ones I posted on my first thread reply from a couple/few months ago. It does look a little better, but not much. 🙁

I will continue to fight the good fight, and hold out hope that someday we can figure this out.

EDITED TO ADD:

I forgot to mention that, after inspecting these lesions very closely and pulling out these plugs over and over again for such a long time, based on what I'm seeing and the way they seem to be attached deep within the skin, I have come to the conclusion (that is, I'm like 95% sure) that what I'm experiencing is definitely something follicle-related. If I can properly get the stupid little plug out in one piece, I can almost always see a wee tiny bit of hair at the end; it's like the follicles of the vellus hairs on my face are becoming inflamed or infected or something. Now, I know that this is basically just "folliculitis", but as we all know, it isn't really presenting like any known common form of folliculitis, nor is it behaving like such. It isn't responding to any normal form of treatment for that, and I have tried telling all of this to the dermatologist but they just won't listen. I'm guessing it's because I'm not a doctor and have zero medical training and almost zero medical knowledge, so I "don't know what I'm talking about".

But I'm also a smart cookie, and I know myself and my skin better than anyone else could. I know enough of the basics to know how things work, biologically and physiologically speaking, and I am very good at extrapolation when it comes to this trial and error we've all been going through. The spots where these lesions have been popping up for me are weirdly mostly symmetrical (which I've also mentioned to the derm), and a couple (not all) of the most troublesome spots (the spots that are currently healed) have produced a small outcropping of new hairs; they are fine and translucent like vellus hairs, but longer (like eyebrow hairs) and more visible, but only if you're looking closely. And I definitely haven't had them before. HOWEVER: I am also 50 years old and right in the thick of perimenopause (which, btw SUUUUUUUUCKS) so the doctors always just dismiss it as one of the symptoms of peri... which, truthfully, it could be? I guess? But there are a couple of things that make me think otherwise:

One is that NONE of the multiple different times I've had blood work have ever shown any increased levels of the hormone that causes extra hair growth commonly seen in perimenopausal women. The other is the fact that this extra hair growth is ONLY happening in the spots where I've had these lesions (but not all of them). I haven't had any of the chin hairs or "moustache" hairs that you usually hear about in this stage of hormonal shifts.

But no one in the medical field will believe me, or even really listen to me. It's so FRUSTRATING, but I know I'm just preaching to the choir here.

I will continue to monitor my situation, as well as this thread, and hope that one of us can find a solution that works.

Stay strong everyone, and take care of yourselves as best you can. ❤️

Has anyone been able to test these hairs and fibers? Under a microscope or to a lab? What exactly are they

@skinbunny

Hey, so I was getting caught up and re-read your reply above, and I think you're actually onto something with this Lupus thing.

After I read what you said about it, I was curious about the characteristics of Lupus and did a whole bunch of reading up on it to see if any of it sounded like what I'm experiencing. One characteristic in particular is referred to as "carpet-tacking"; I had to go do more searches to find out what that is exactly, and I've copied and pasted a general description below:

"Carpet tack sign is a characteristic sign of DLE. It is also known as cats tongue sign or tin tack sign. It occurs due to the accumulation of scales in the hair follicles with resultant loss of hair. Later on, when scales are peeled off, typical keratotic spikes become visible producing characteristic carpet-tack sign."

This basically means that when a scab is pulled off a lesion, you'll see a bunch of little spikes attached to the underside, which are the keratin-laden follicles mentioned in the quote. (At least I think I got that right?) Anyways, this was a revelation for me because that's something that I've experienced since I was a kid. In fact, I sincerely thought it was a completely normal characteristic of wound scabbing until literally just a couple of days ago when I looked this up. I had NO IDEA that it was abnormal???

Several of the other characteristics of this autoimmune disease seem to match up with what I'm experiencing as well, so I've booked yet another appointment with the dermatologist I've been seeing to ask about it and see if she'll do some testing.

I'm honestly surprised and a little disappointed that it wasn't included in the blood work she ordered before tbh. I'm hoping beyond hope that this finally sheds some light on this, because I'm so very tired of the pain, the itching, and the shame of this absolutely disfiguring condition. 😞

My appointment is next Tuesday, and hopefully the blood work can be scheduled shortly after that. Once I know more, I will post an update.

Wish me luck. 🥺🤞

@mizweirdo I brought up the possibility of this being lupus to a dermatologist like 2 years ago. He flat out said "No, it's not lupus". 🙄

There is follicular plugging in cutaneous lupus, which is what we have as well, but I don't see many of these characteristic "white plugs" in lupus cases. I think it's definitely worth to get tested though if you find a doctor willing to listen. It would also make sense why topical Tacrolimus seems to be working for someone. Medicine isn't as black and white as people would like to think - it is not out of the realm of possibility that we have a variant of cutaneous lupus that has an unusual presentation.

@skinshit

Hmm 🤔 Thanks for this, it gives me something more to think about.

I read in one of the sources I found while researching cutaneous lupus that one of the reasons it's so difficult to diagnose is that it can present VERY differently in each individual, that it's not really a solid, definitive set of symptoms across the board for every person. As I mentioned, there were some other characteristics of Lupus I read about which seem to match up with what I'm experiencing as well (exposure to sun ALWAYS makes it worse, extremely adherent plaques, etc), and that's enough for me to request some more testing. Plus, frankly, I'm desperate; I feel like I'm at the end of my rope, and if grasping at straws is all I have left then so be it. I'm pretty much at the point where I want to tear off my entire face and have a whole new one surgically implanted. Lol

Even if it isn't Lupus, I feel like there's a pretty damn good chance it's some adjacent form of autoimmune condition; it would explain why absolutely nothing I've tried is helping at all. Not only will these white plugs go away, but the lesions are simply not healing anymore, not even if I leave them completely alone (which is extraordinarily difficult, due to the extremely bothersome sensory nightmare that comes with it, especially since I struggle with dermatillomania 😞). Anything and everything that I try to apply to help promote healing only irritates the spots - even just a bit of plain Vaseline.

The dermatologist I'm seeing does seem to be more willing to listen to me than any other I've been to, so I don't think I'll have any problem getting her to agree to further testing. My greatest fear now is that the various tests for autoimmune conditions come up negative, which means I still have no answers, and no treatment plan. If that happens, I will cry big fat salty tears, which will almost certainly irritate my skin even more and make it all worse. Lol

One more thing I wanted to mention is that the pathology report from the biopsy several weeks ago did mention a second possible diagnosis (aside from Pruigro Nodularis) of something called Spongiotic Dermatitis. I did a deep dive into this of course, but based on the description + the example photos of the condition, I'm not convinced this is what I'm experiencing. However, I wanted to mention it because perhaps someone else here might benefit from exploring that route?

Anyway, we'll see what the new testing reveals. Onward!

@mizweirdo Check out "acquired perforating dermatosis" and "reactive acquired perforating dermatosis".

https://www.anaisdedermatologia.org.br/en-acquired-reactive-perforating-dermatosis-successfully-articulo-S0365059623002003

I thought you may want to have a look prior to seeing your derm - maybe worth bringing up!

@skinshit Thank you, I'll definitely check that out!

I was actually just coming in now to post another thing I found when I was researching cutaneous Lupus; one of the things I'm struggling with that is either directly related to this condition or is simply happening alongside it is a fairly persistent proliferation of small cysts. I did some googling to see if this form of Lupus can contribute to something like that, and I ran across an article about a rare but very real variant of cutaneous Lupus called Comedogenic Lupus. Here's the link:

https://pmc.ncbi.nlm.nih.gov/articles/PMC9984717

I gotta say, the deeper I dig into this, the more it sounds like what I'm experiencing.

And I took a quick look just now at the site you linked, and it definitely sounds like something to consider. I did notice that it mentioned right off the bat that autoimmune diseases are one of the systemic diseases associated with ARPD. So I suppose that means there's a chance that not only are they both at play here, but they're directly linked.

Anyway, thank you again. I feel like I'm so close to finally getting some answers after all this time. I will continue to post updates as they happen!

@mizweirdo Hi! How did your derm appointment go?

@skinshit It went....well enough, I guess.

The appointment was yesterday, and when I said I'd like to test for autoimmune stuff, and that I suspected maybe cutaneous Lupus, she seemed thoroughly skeptical but agreed to do so. She immediately said "And what makes you think that?" I tried explaining about how the various markers and symptoms seemed to line up fairly well with what I'm experiencing, but she didn't seem to want to take my word for it. I also mentioned the Reactive Perforating Dermatosis, and that it has associations with various systemic diseases such as autoimmune etc, but I don't think she was interested in that at all, as she didn't say anything about it.

Tbh she was a little patronizing about it; she made a point of saying SEVERAL times that she was giving me the "benefit of the doubt", and made sure to tell me very clearly and very carefully that if the tests didn't show anything, she would absolutely not be looking into that any further. She also mentioned that it doesn't look like any cutaneous lupus she's ever seen so she doesn't think that's what it is; I told her that my understanding is that it can present very differently per individual, which is one of the reasons it's tricky to diagnose. And then she mentioned again about giving me the benefit of the doubt, etc. I was in tears.

She didn't even try to look at my skin any closer, didn't even ask me to take off the bandana I wear to cover my forehead to hide the lesions.

I was getting the impression that she now believes that all of my skin problems are caused solely by my dermatillomania, regardless of how much I insist that there's something else going on. I tried to tell her that I'm not just digging random holes in my skin, or actively looking for problems to pick at that might not exist - that I only give in to the compulsion when the lesions become unbearably itchy and inflamed. At that point, she once again said she was giving me the benefit of the doubt, blah blah blah. 🙄

Anyway, I got the requisition and managed to get into the lab to get the blood drawn yesterday, shortly after I left my appointment, and it'll likely be at least a few days before the results come back.

If they don't show anything abnormal, I honestly don't know what I'm going to do. I am grasping at straws, and at my wit's end. This is ruining my life; I don't leave the house unless absolutely necessary, I don't socialize, and I haven't even gotten a haircut in over 6 months because I'm too embarrassed by the condition of my skin. 😞 I'm starting to feel like it might be best just to give up, that there's no point in doing anything anymore - even eating, cleaning, or other daily tasks. I know that's a little defeatist, but the days are getting harder to get through and the doctors haven't been any help. And lately I've been struggling with searing headaches, extreme fatigue, and my right eyeball has begun to get alarming red veiny patches on and off. I mentioned all of this to the derm of course, but she seemed to brush it off.

I just don't know what to do anymore.