2 hours ago, cehern said:

Definitely tried the BP regimen. My derm currently has me on Tacrolimus to test out whether it is Perioral Dermatitis. I also apply BP in the morning and do the Tacro at night. I think I need to clean up my diet as well and reduce my stress. I was in a Mexican small town last month where I didnt have access to all my usual junk food and when I got back home, I cleared up to a manageable level and I was really excited. Ive been trying to think what in the world I did differently. I was down to maybe 2 to 3 pimples which would be fine with me for around 3 weeks. I was so happy and thought I finally figured it out. Then it all just came back and was so heartbroken.

I hear you about the ups and downs. Its not good for us and no way it can be healthy. I think thats why Ill probably just take the plunge to Accutane. My mood is completely different when I clear up as opposed to when I am breaking out. I kinda retreat away from family/friends because of it. Maybe this third time on Accutane will do the trick. The last time I was on it I was 20 years old (43 now) so I resisted taking it again for a really long time. It started when I was around 14 so its 29 years of dealing with this

Thank you for the kinds words. Nice to know others have been in the same boat as me.

There might be a clue there if your skin cleared up during your vacation in Mexico. Maybe there is some trigger in your environment at home, e.g exposure to chlorinated/fluoridated water, mold, allergies to laundry detergent etc. And the stress reduction and healthy/non-junk foods probably helped too.

Yeah this condition just sucks. I like to think that there is a reason for everything and that there is some important lesson to be learned here... but sometimes I start to doubt even that. Like I get it -- you should take care of yourself and practice self-care, live a healthy lifestyle, not beat yourself up, learn to "let go", and so on. But it still doesn't get rid of the white pustules so I am still stuck being sad and depressed, and I guess despondent.The truth is that you just don't feel like socializing with 10 oozing pustules on your face.

I'm sorry to hear you have had to deal with this for so long. In some way it's re-assuring to know that you are not alone with this; I have literallynever seen another person with this skin condition.

I just hope what I'm doing continues to work. I am not sure what exactly helped but my skin feels normal (?) again and I have had 0 pustules for weeks.

Besides the benzoyl peroxide I have added in:

- A seb derm cream (Bioderma Sensibio DS+ Creme)

- Mega dose vitamin C

- Home-made kefir for prebiotics

Perhaps the vitamin C and kefir did something beneficial to fix my gut health/microbiome. Antibiotics is what started this mess for me.

28 minutes ago, cehern said:

My breakouts were bad even before Accutane. The only thing I noticed was when the breakouts came back, I started breaking out in the back of my neck/hair line. I never had that before Accutane. I think my heavy use of antibiotics for years caused this for me. Im much older now and I breakout with around 10 or so pimples in my mouth area and around 6 to 10 in my hairline. Although this is frustrating, its nowhere close to my acne from 20 years ago. This is my glimmer of hope Accutane will take care of it for me. Im going to do my best to stay stress free, avoid sugar/dairy, etc. My dermatologist appointment is in 6 weeks and I wont change the date. Sometimes I get emotional over it and want to take the plunge right now but I will wait and do my best to decrease it. Accutane is not fun while you are on it and I would rather avoid it.

Honestly I would say to try the probiotics. I notice a pattern in this thread where people find something that works for them and tell people they found a cure. Thats ridiculous. We are all different and we have to experiment ourselves to see what works for us.

2 minutes ago, GrumpyPainter said:

 

There might be a clue there if your skin cleared up during your vacation in Mexico. Maybe there is some trigger in your environment at home, e.g exposure to chlorinated/fluoridated water, mold, allergies to laundry detergent etc. And the stress reduction and healthy/non-junk foods probably helped too.

Yeah this condition just sucks. I like to think that there is a reason for everything and that there is some important lesson to be learned here... but sometimes I start to doubt even that. Like I get it -- you should take care of yourself and practice self-care, live a healthy lifestyle, not beat yourself up, learn to "let go", and so on. But it still doesn't get rid of the white pustules so I am still stuck being sad and depressed, and I guess sort of despondent.The truth is that you just don't feel like socializing with 10 oozing pustules on your face.

I'm sorry to hear you have had to deal with this for so long. In some way it's re-assuring to know that you are not alone with this; I have literallynever seen another person with this skin condition.

I just hope what I'm doing continues to work. I am not sure what exactly helped but my skin feels normal (?) again and I have had literally0 pustules for weeks.

Besides the benzoyl peroxide I have added in:

- A seb derm cream (Bioderma Sensibio DS+ Creme)

- Mega dose vitamin C

- Home-made kefir for prebiotics

Perhaps the vitamin C and kefir did do something beneficial for restoring my gut health/microbiome. Antibiotics is what started this mess for me.

Got a nice scare when you stated antibiotics caused this for you because of my surgery and having to take them soon lol. When you say antibiotics caused it for you, do you mean like really long term use, how long did you take them?? I just am gripping to the hope that a small 7 day course for surgery wont mess me up to bad. And also, for cehern, I agree with grumpypainter, the trip in Mexico could be a clue that diet changes could help you. Maybe Try keto, Ive heard multiple people say it helps them. no sugar and carbs could possibly help you. There are people that say keto isnt necessarily too healthy for someones body, but if it works then so be it!

9 hours ago, GrumpyPainter said:

I hear you.

For me it has been theunpredictability that makes this condition so mentally exhausting. You are clear one week for seemingly no reason, and then you have 5-10 nasty white pustules for seemingly no reason. Not joking I think I will die at least a few years prematurely due to the tremendous amount of stress from trying to figure out what causes flareups/stressing out over pustules and the red marks left by pustules.

Literally this is the same as the "chronic unpredictable mild stress" model used to induce depression in rodent models:

"The unpredictable chronic mild stress (UCMS) rat model of depression was first proposed by Katz in 1982 and developed further by Papp and Willner (Willner, 2017). The model involvesexposing the animal at unpredictable times over several weeks to a series of minor-intensity stressors."

Not to sound like a broken record - but did you ever commit to trying the BP regimen? Like strictly for at least a couple of weeks?

Again, I have had this for 10 + years and tried everything. You name it, I have tried it. Spent thousands of dollars on creams that didn't work. The only thing that reliably clears my skin is using acne.org 2.5% BP gel on a consistent basis.

Before you go on Accutane again (and I don't blame you for doing so), maybe try the BP regimen I outlined above. A seb derm cream likeBioderma Sensibio DS+ Creme will also aid in the healing process.

My skin is perfect now but I have PTSD from years of dealing with this.

I forgot to mention the details when I went on my BP regimen. I tried it religiously for 6 weeks and when I didnt see results, I stopped. Im not saying theres a correlation but I suddenly started clearing up within 5 days of stopping. It was only temporary and sometimes I wonder if going to the dentist to replace my crown started the breakouts (Stress of the procedure). Within 2 days of that, the breakouts started back up again and havent stopped since.

1 hour ago, Downshift636 said:

Can I ask you if your breakouts started before or after you took accutane for the first time? Cause I had bad cystic acne for years, finally took accutane for that, and it cleared my acne but this problem started after. Im convinced accutane caused this for me. Also, not trying to scare you out of trying it again, just curious cause I suspected this and I read another person on here who suspects the same. Also, how do you guys feel about probiotics? Ive heard some people on here say it makes it worse, but for mine I suspect a yeast issue, which of course probiotics are a first line measure for to bring back good bacteria. Grumpypainter, Ive done a culture on some of the whiteheads one time and it came back all negative for bacteria. So I dont know if that means I am not dealing with any bacterial infection, or if the test was just inaccurate. Im really glad you found something that keeps you completely clear! Glad there is a success story for at least one of us on here lol. Mine also occurs not just around my mouth/chin, but sometimes on my nose(not under but on the sides), and down my neck, which is why I further suspect fungal issue because idk if the nose/bacteria issues would travel down to my neck as well.

5 minutes ago, Downshift636 said:

 

Got a nice scare when you stated antibiotics caused this for you because of my surgery and having to take them soon lol. When you say antibiotics caused it for you, do you mean like really long term use, how long did you take them?? I just am gripping to the hope that a small 7 day course for surgery wont mess me up to bad. And also, for cehern, I agree with grumpypainter, the trip in Mexico could be a clue that diet changes could help you. Maybe Try keto, Ive heard multiple people say it helps them. no sugar and carbs could possibly help you. There are people that say keto isnt necessarily too healthy for someones body, but if it works then so be it!

Probiotics are worth experimenting with IMO. Try to get some quality kefir (or better home-made kefir using raw milk). Kefir has a powerful effect on modulating gut microbiome. Haven't had much success with other probiotic strains... and I have tried A LOT of probiotics. Bifidobacterium longum BB 536 is a pretty decent one though.

I believe a culture can come back negative when it's the normal skin flora (including Staphylococcus aureus) that causes the pustules. So I wouldn't necessarily rule out staph overgrowth as the culprit. Staph can cause breakouts on scalp and neck because, well, you have staph everywhere on the body! See reddit r/staphacne for more information. I'm not a doctor so maybe you do have a fungal problem, but it sure sounds like Staph to me. There are many case reports of Accutane causing a chronic issue of Staph causing breakouts. I could dig them up if you want to look at them.

I started getting acne and these pustules after taking multiple courses of antibiotics during 2012-2015. I believe the tetracycline family caused a semi-permanent dysbiotic shift in my skin/nose flora, either selecting for more pathogenic/virulent Staph strains or allowing the Staph to overgrow relative to other commensals. If you have to take antibiotics for 7 days before surgery then it is what it is, if you already have white pustules then I doubt it will make the problem much worse. If that's any solace to you lol.

30 minutes ago, GrumpyPainter said:

 

There might be a clue there if your skin cleared up during your vacation in Mexico. Maybe there is some trigger in your environment at home, e.g exposure to chlorinated/fluoridated water, mold, allergies to laundry detergent etc. And the stress reduction and healthy/non-junk foods probably helped too.

Yeah this condition just sucks. I like to think that there is a reason for everything and that there is some important lesson to be learned here... but sometimes I start to doubt even that. Like I get it -- you should take care of yourself and practice self-care, live a healthy lifestyle, not beat yourself up, learn to "let go", and so on. But it still doesn't get rid of the white pustules so I am still stuck being sad and depressed, and I guess despondent.The truth is that you just don't feel like socializing with 10 oozing pustules on your face.

I'm sorry to hear you have had to deal with this for so long. In some way it's re-assuring to know that you are not alone with this; I have literallynever seen another person with this skin condition.

I just hope what I'm doing continues to work. I am not sure what exactly helped but my skin feels normal (?) again and I have had 0 pustules for weeks.

Besides the benzoyl peroxide I have added in:

- A seb derm cream (Bioderma Sensibio DS+ Creme)

- Mega dose vitamin C

- Home-made kefir for prebiotics

Perhaps the vitamin C and kefir did something beneficial to fix my gut health/microbiome. Antibiotics is what started this mess for me.

Maybe I'll give theseb derm cream Bioderma Sensibio DS+ Creme, Vitamin C and clean up my diet.

23 minutes ago, Downshift636 said:

 

Got a nice scare when you stated antibiotics caused this for you because of my surgery and having to take them soon lol. When you say antibiotics caused it for you, do you mean like really long term use, how long did you take them?? I just am gripping to the hope that a small 7 day course for surgery wont mess me up to bad. And also, for cehern, I agree with grumpypainter, the trip in Mexico could be a clue that diet changes could help you. Maybe Try keto, Ive heard multiple people say it helps them. no sugar and carbs could possibly help you. There are people that say keto isnt necessarily too healthy for someones body, but if it works then so be it!

haha, I think you'll be ok with your 7 day course. In my case, it was years and years of using different antibiotics.

In reference to Mexico, that's what I'm thinking too. That's the only drastic thing that happened within that period. I did eat some chips and gorditas (fried wheat with cheese lol) while I was out there. I ate almost no sugar and dairy at all and walked way too much lol. It was insanely hot and humid and when I got back it's not as if I was stress free -- I had to shortly go to a funeral within 2 or 3 days after I got back. Within 2 days of getting back, I cleared up so much I was shocked. I actually had a dermatologist appointment a week after I got back and maybe it was my body doing it to trick the dermatologist because when he saw me he thought I was doing great lol.

21 minutes ago, cehern said:

Maybe I'll give the seb derm cream Bioderma Sensibio DS+ Creme, Vitamin C and clean up my diet.

 

haha, I think you'll be ok with your 7 day course.  In my case, it was years and years of using different antibiotics.

 

In reference to Mexico, that's what I'm thinking too.  That's the only drastic thing that happened within that period.  I did eat some chips and gorditas (fried wheat with cheese lol) while I was out there. I ate almost no sugar and dairy at all and walked way too much lol. It was insanely hot and humid and when I got back it's not as if I was stress free -- I had to shortly go to a funeral within 2 or 3 days after I got back.  Within 2 days of getting back, I cleared up so much I was shocked.  I actually had a dermatologist appointment a week after I got back and maybe it was my body doing it to trick the dermatologist because when he saw me he thought I was doing great lol. 

That™s the frustrating part of this is it will go away a ton and when you tell people about it or your dermatologist they don™t believe you because your not having the 10 pustules on your face at that exact time! So annoying! These are some pictures of mine. The first one if you look closely there™s very tiny whiteheads alllll over amongst the two or three more bigger visible ones. 

12 minutes ago, Downshift636 said:

That™s the frustrating part of this is it will go away a ton and when you tell people about it or your dermatologist they don™t believe you because your not having the 10 pustules on your face at that exact time! So annoying! These are some pictures of mine. The first one if you look closely there™s very tiny whiteheads alllll over amongst the two or three more bigger visible ones. 

I would suggest to start taking 1 picture a week and keep a Break-Out log on your phone.  That's what I'm going to show my dermatologist the next time I go to prove how unpredictable my skin is.  One day I look ok and the next I'm not.  It's very unpredictable unfortunately. I'm sorry you have to go through this.  GrumpyPainter managed to control it so maybe one day we can too.

23 hours ago, Downshift636 said:

That™s the frustrating part of this is it will go away a ton and when you tell people about it or your dermatologist they don™t believe you because your not having the 10 pustules on your face at that exact time! So annoying! These are some pictures of mine. The first one if you look closely there™s very tiny whiteheads alllll over amongst the two or three more bigger visible ones. 

Folliculitis. Your skin barrier is weakened and you are probably shaving to often. 

Additionally to your carb/sugar free diet do this: don't shave for 3 months, let the only times your face touches water be every evening, a quick rinse with cool water where no rubbing is involved. As gentle as possible. Just a rinse with water and bare hands. 

During the day if your face gets oily, clean your hands with soap, let them dry, then gently rub the oil off your face with bare hands. Do multiple times a day if necessary. 

Once a week, but only if a lot of dead skin and grime built up on your face, you can exfoliate by wetting your face, waiting a little and then gently rub everything off with your bare hands.

This + diet will cure your skin, I am pretty sure. Try it for 3 months and then tell me what happened.

On 7/31/2022 at 10:42 AM, Downshift636 said:

That™s the frustrating part of this is it will go away a ton and when you tell people about it or your dermatologist they don™t believe you because your not having the 10 pustules on your face at that exact time! So annoying! These are some pictures of mine. The first one if you look closely there™s very tiny whiteheads alllll over amongst the two or three more bigger visible ones. 

I try to keep a log to see if I can figure out exactly what I did and I realized it was the weeks I stopped everything that I noticed a difference.   Nothing was working so I got a little fed up and I stopped with the Benzoyl Peroxide.  No antibiotics, BP, and Tacrolimus.  The only thing I maintained was the Sulfur Soap.  Shortly afterwards, I had a veggie juice every day for the whole week since I was sick in hopes I would recover faster from covid.  The breakout started back up again when I went to the dentist and I had recently started Tacrolimus which I have no clue why I did that.  I was already clearing up so why bother adding in a cream if what you are doing is fine?  The breakouts started shortly after I started the Tacrolimus (3 weeks in).  Since today is a new month, I'm going to attempt to simply go cold turkey and report back in 6 weeks.  No BP, Tacro, antibiotics, not even sulfur or my Cerave soap.  Just water to wash my face and some sunblock for the hot California sun.  I'll also stay away from dairy, cheese, and reduced my sugar intake by 80%.  I'm trying to do exactly what I did when I cleared up.

16 hours ago, Eevs said:

Folliculitis. Your skin barrier is weakened and you are probably shaving to often.

Additionally to your carb/sugar free diet do this: don't shave for 3 months, let the only times your face touches water be every evening, a quick rinse with cool water where no rubbing is involved. As gentle as possible. Just a rinse with water and bare hands.

During the day if your face gets oily, clean your hands with soap, let them dry, then gently rub the oil off your face with bare hands. Do multiple times a day if necessary.

Once a week, but only if a lot of dead skin and grime built up on your face, you can exfoliate by wetting your face, waiting a little and then gently rub everything off with your bare hands.

This + diet will cure your skin, I am pretty sure. Try it for 3 months and then tell me what happened.

thats def folliculitis, i am prone to similar although less widespread, i get bigger pustules, his is quite mild but i know it looks worse IRL.

for me personally shaving every day with a electric trimmer works best, after wards i need to wipe away dead skin too, then i apply pure aloe. if you notice a breakout appearing get BP on it asap

if you get a lot of dead skin, it traps the bacteria under the skin, i noticed the exact same with the pustules, once they crust over they almost bury themselves under the skin and that enables them to spread.

i do agree with you about it being bc of damaged skin barrier and being gentle, when i cleanse too hard i get breakouts even in places where there are no hair follicles. its catch 22 for me because i have large pores which get clogged easily with the amount of dead skin i produce. i am trying to keep them clear as then they shrink, but its very hard

and +1 to the guy that said after accutane he got pustules in more places, after accutane i started getting the pustules on my scalp, especially behind my ears which i never had before.

overall my skin doesnt break out much anymore, but like everyone here i am always on red alert and it has caused me a lot of stress and to miss out on a lot

3 hours ago, folliculitingg said:

thats def folliculitis, i am prone to similar although less widespread, i get bigger pustules, his is quite mild but i know it looks worse IRL.

for me personally shaving every day with a electric trimmer works best, after wards i need to wipe away dead skin too, then i apply pure aloe. if you notice a breakout appearing get BP on it asap

if you get a lot of dead skin, it traps the bacteria under the skin, i noticed the exact same with the pustules, once they crust over they almost bury themselves under the skin and that enables them to spread.

i do agree with you about it being bc of damaged skin barrier and being gentle, when i cleanse too hard i get breakouts even in places where there are no hair follicles. its catch 22 for me because i have large pores which get clogged easily with the amount of dead skin i produce. i am trying to keep them clear as then they shrink, but its very hard

and +1 to the guy that said after accutane he got pustules in more places, after accutane i started getting the pustules on my scalp, especially behind my ears which i never had before.

overall my skin doesnt break out much anymore, but like everyone here i am always on red alert and it has caused me a lot of stress and to miss out on a lot

+1

This stuff spreads like wildfire. If you are not in control then it will get out of hand quickly. This is why it's so important to get on a good diet and/or skincare regimen to stop the trainwreck in its early stages. Otherwise you will risk further mental health decline/skin scarring, etc.

Sometimes I forget some of the basic things that can help with this condition, here are just a few tips:

• Don't touch your face ever...except when your hands are clean or you are doing your skincare regimen. Touching your face will spread around the bacteria.Don't dry your face with dirty towels etc.
• New clean pillowcase every night.
• Wash all your clothes at a high temperature (avoid bad laundry detergents)
• Avoid super hot showers.
• Be a detective/scientist.Do super controlled experiments where you only change 1 variable. If you add 5skincare products and have new pustules you don't know what is the trigger. Often it can be a good idea to use zeroproducts and add in one thingat a time.
• Have a minimalistic skincare routine.Again makes it easier to troubleshoot. I only use BP and moisturizer. No cleanser.
• Keep skin dry and clean.Pustules love when skin is oily and dirty.
• Get as much sunshine as you can.I personally don't like using sunscreen.
• Relax and de-stress (I know it is difficult during flareups but stressing out won't help)
• Eat a good diet. If you don't know where to start try a modified carnivore diet with some carbs for sanity/sleep/mood. Meat, butter,whole fruit, root veggies etc. Eggs, dairy are okay for some, but can trigger pustules. Grains and starches seem to cause a lot of problems. Drink clean, chemical-free water. This kind of diet is excellent for gut health. Now keep in mind,diet will only get you so far (I had pustules on strict carnivore diet!)
• Be consistent with your skincare/diet regimen.It takes time for the skin barrier to heal and in order to get good results you have to be consistent with your efforts. When pustules go away, keep doing the same thing to keep them away.
• Try home-made kefir (ideally made with raw goat milk)and vitamin C for optimizing gut microbiome. Oregano oil can be useful too if there is some sort of bacterial overgrowth.
• Acne.org 2.5% benzoyl peroxide gel. BP is agame changer. Short contact therapy for 5 minutes reduces irritation greatly.During bad flare-ups I find that the only thing that helps to calm down pustules isBP.
• Seb derm creamse.gBioderma Sensibio DS+ Creme(with piroctone olamine and/or climbazole).Helps to reduce oily skin and makes skin inhospitable for Staph bacteria.
• Nasal decolonization with chlorhexidine or rubbing alcohol.
• Avoid medications, antibiotics etc.

21 minutes ago, GrumpyPainter said:

+1

 

agree with all those points, i could actually write an entire book on these pustules.

The skin barrier is rarely talked about but it plays a role for sure, also because most of the actives from the Dr destroy the barrier the same way the antibiotics destroy your gut.

Oily skin + damaged skin barrier + seb derm + naturally more staph living on the skins surface

then add in destroyed gut + over exfoliation + stress + poor sleep

Its the same with the scalp, the derm gave me a triple active shampoo with acids and coal tar + a topical steriod. It works but as soon as you stop you are screwed.

But ye, once you see its starting to spread you gotta act quickly or it can get real bad. At one point pus was seeping out the outer corners of my eyes, i think it was related to the same infection. Also the sinus issues and I even get a overproduction of ear wax

57 minutes ago, folliculitingg said:

agree with all those points, i could actually write an entire book on these pustules.

The skin barrier is rarely talked about but it plays a role for sure, also because most of the actives from the Dr destroy the barrier the same way the antibiotics destroy your gut.

Oily skin + damaged skin barrier + seb derm + naturally more staph living on the skins surface

then add in destroyed gut + over exfoliation + stress + poor sleep

Its the same with the scalp, the derm gave me a triple active shampoo with acids and coal tar + a topical steriod. It works but as soon as you stop you are screwed.

But ye, once you see its starting to spread you gotta act quickly or it can get real bad. At one point pus was seeping out the outer corners of my eyes, i think it was related to the same infection. Also the sinus issues and I even get a overproduction of ear wax

Maybe we should write a book about this condition... I am sure there are at least 7 other people out there with white pustules that would want to read that book!! 

And yeah agree it's never just one thing that goes wrong, it's like an avalanche of crap that compounds and make this problem worse. 

Forgot to mention sleep! Of course you should go to bed at 9-10 PM, get your 8 hours of sleep and get sunshine in the morning. 

If I have the courage I might post a picture here I took when pustules were so bad, I had a mental breakdown and wanted to get antibiotics from an online doctor. Of course the antibiotics helped but then it got much worse again after I stopped them... a.k.a the vicious cycle. 

Just really happy that I seem to have been "cured" now. Anyone that needs help PM me or write here. 

4 hours ago, folliculitingg said:

agree with all those points, i could actually write an entire book on these pustules.

The skin barrier is rarely talked about but it plays a role for sure, also because most of the actives from the Dr destroy the barrier the same way the antibiotics destroy your gut.

Oily skin + damaged skin barrier + seb derm + naturally more staph living on the skins surface

then add in destroyed gut + over exfoliation + stress + poor sleep

Its the same with the scalp, the derm gave me a triple active shampoo with acids and coal tar + a topical steriod. It works but as soon as you stop you are screwed.

But ye, once you see its starting to spread you gotta act quickly or it can get real bad. At one point pus was seeping out the outer corners of my eyes, i think it was related to the same infection. Also the sinus issues and I even get a overproduction of ear wax

Exact same here lol, chronic sinus/rhinitis issues and insane amount of ear wax

I've been using the Finacea for a few days and I'm optimistic, it does seem to calm my skin down a lot, but it's too soon to say what impact it has on the pustules.

After just a few days though my nose creases look cleaner than they have in years... they usually have all kinds of gunk no matter how well I try to clean them when cleansing:

Today is also a good day without any pustules, but with this condition I can go to bed without any and wake up with massive ones in the morning

1 hour ago, Scorpy said:

Exact same here lol, chronic sinus/rhinitis issues and insane amount of ear wax

I've been using the Finacea for a few days and I'm optimistic, it does seem to calm my skin down a lot, but it's too soon to say what impact it has on the pustules.

After just a few days though my nose creases look cleaner than they have in years... they usually have all kinds of gunk no matter how well I try to clean them when cleansing:

Today is also a good day without any pustules, but with this condition I can go to bed without any and wake up with massive ones in the morning

Please keep us updated on the Finacea. 

On 8/2/2022 at 6:54 PM, Scorpy said:

Exact same here lol, chronic sinus/rhinitis issues and insane amount of ear wax

 

We have the same nose lol , I also have the 24/7 gunk buildup in nose creases and "rice plugs" in my pores. BP does not help with this, in fact it makes it worse for me. Can't remember if Finacea helped or not but it didn't go away completely. I am pretty sure this is seb derm and skin texture is improving but isn't 100% yet.

Guys here is another theory I have:

This skin condition is caused by chronic/latent H. pylori gut infection.

H. pylori bacteria is linked with rosacea and this condition seems to be a subset of rosacea. H pylori would explain a lot of the skin symptoms (pustules, redness, inflammation), gut issues and even sinus issues (h pylori can colonize sinuses) we are facing.

Maybe it's not a gut microbiome problem but an actual infection?

"There has been increasing evidence regarding H. pylori and reflux as possible pathological causes for chronic rhinosinusitis. Studies have indicated high prevalence of GERD in patients with chronic rhinosinusitis." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4426162/

"It is confirmed that H. pylori infection is involved in the development of rosacea. It is suggested that rosacea patients should be tested for H. pylori infection, the H. pylori-positive rosacea patients should be treated with eradication of H. pylori, so as to enhance the therapeutic effect of rosacea. This study adds that H. pylori infection is involved in the development of rosacea. Epidemiological investigations and experiments have confirmed the rationality. The effect of anti-H. pylori therapy is better than the routine therapy for rosacea. H. pylori-positive rosacea patients should be treated with the therapeutic method of eradication of H. pylori." https://pubmed.ncbi.nlm.nih.gov/29996790/

"The patients with severe AV had higher levels of fecal H pylori antigen and serum H pylori antibody as compared to the patients with mild and moderate AV and with healthy controls. The indicators of H pylori infection were positively correlated with the severity and duration of AV." https://pubmed.ncbi.nlm.nih.gov/32333495/

I have also had other health problems that make me suspect H pylori, such as lack of appetite. Since starting the kefir and vitamin C my skin has gotten so much better... maybe I accidentally got rid of H pylori in the gut? Both vitamin C and kefir are proven clinically to get rid of this bug. I have also been chewing mastic gum. At some point I will try weaning off BP to see if I stay clear.

17 minutes ago, GrumpyPainter said:

 

We have the same nose lol , I also have the 24/7 gunk buildup in nose creases and "rice plugs" in my pores. BP does not help with this, in fact it makes it worse for me. Can't remember if Finacea helped or not but it didn't go away completely. I am pretty sure this is seb derm and skin texture is improving but isn't 100% yet.

Guys here is another theory I have:

This skin condition is caused by chronic/latent H. pylori gut infection.

H. pylori bacteria is linked with rosacea and this condition seems to be a subset of rosacea. H pylori would explain a lot of the skin symptoms (pustules, redness, inflammation), gut issues and even sinus issues (h pylori can colonize sinuses) we are facing.

Maybe it's not a gut microbiome problem but an actual infection?

"There has been increasing evidence regarding H. pylori and reflux as possible pathological causes for chronic rhinosinusitis. Studies have indicated high prevalence of GERD in patients with chronic rhinosinusitis." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4426162/

 

"It is confirmed that H. pylori infection is involved in the development of rosacea. It is suggested that rosacea patients should be tested for H. pylori infection, the H. pylori-positive rosacea patients should be treated with eradication of H. pylori, so as to enhance the therapeutic effect of rosacea. This study adds that H. pylori infection is involved in the development of rosacea. Epidemiological investigations and experiments have confirmed the rationality. The effect of anti-H. pylori therapy is better than the routine therapy for rosacea. H. pylori-positive rosacea patients should be treated with the therapeutic method of eradication of H. pylori." https://pubmed.ncbi.nlm.nih.gov/29996790/

 

"The patients with severe AV had higher levels of fecal H pylori antigen and serum H pylori antibody as compared to the patients with mild and moderate AV and with healthy controls. The indicators of H pylori infection were positively correlated with the severity and duration of AV." https://pubmed.ncbi.nlm.nih.gov/32333495/

I have also had other health problems that make me suspect H pylori, such as lack of appetite. Since starting the kefir and vitamin C my skin has gotten so much better... maybe I accidentally got rid of H pylori in the gut? Both vitamin C and kefir are proven clinically to get rid of this bug. I have also been chewing mastic gum. At some point I will try weaning off BP to see if I stay clear.

Now things get interesting. I developed the white pustules when I drank a lot of raw milk and ate a lot of raw meat (I NEVER took antibiotics). Both can be contaminated with H Pylori. So it could very well be that.

Now, how does H pylori survive? What can I do to kill it?

Also, did the pustules cause scarring for you? Are they even able to cause permanent scarring? For me they just cause a red spot that fades with time. So when I don't have a pustule for a long time (which only works by avoiding lactose and not eating a surplus and generally go easy on the fast digesting carbs) my face looks like I never had that shit.

1 hour ago, Eevs said:

Now things get interesting. I developed the white pustules when I drank a lot of raw milk and ate a lot of raw meat (I NEVER took antibiotics). Both can be contaminated with H Pylori. So it could very well be that.

Now, how does H pylori survive? What can I do to kill it?

Also, did the pustules cause scarring for you? Are they even able to cause permanent scarring? For me they just cause a red spot that fades with time. So when I don't have a pustule for a long time (which only works by avoiding lactose and not eating a surplus and generally go easy on the fast digesting carbs) my face looks like I never had that shit.

Yeah I think I also got it from drinking raw milk... apparently raw sheep's milk is loaded with H.pylori. Though I should mention this is just a theory and I have never gotten properly diagnosed by a doctor with breath test etc. Another thing I should point out is that I had been dealing with white pustules for about 8 years before the raw milk drinking, but after getting sick/food poisoning from raw milk I started getting larger cystic pustules on chin and back which was a new occurrence for me.

H. pylori bacteria burrows in your stomach lining and produces ammonia which neutralizes the stomach acid. Lack of stomach acid makes it easier for H pylori to colonize gut and become chronic.

The standard medical treatment is triple therapy, i.e two types of antibiotics and a PPI. Some people get cured, and some don't due to antibiotic resistance, but H pylori often comes back. This is why I prefer the "natural" treatment with mastic gum, vitamin C and kefir (lots of real clinical studies on these compounds and H pylori). My appetite is back now so I think it could be quite effective.

No the small white pustules don't leave any scars for me, except the redness which fades. But I have gotten bigger cystic pustules that have left some minor scarring. On my jawline I got gigantic cysts that have left bigger scarring (after the raw milk experiment). Still my face looks remarkably good despite 10 years of chronic inflammation and pustules. My personality is scarred though lol.

11 hours ago, GrumpyPainter said:

Yeah I think I also got it from drinking raw milk... apparently raw sheep's milk is loaded with H.pylori. Though I should mention this is just a theory and I have never gotten properly diagnosed by a doctor with breath test etc. Another thing I should point out is that I had been dealing with white pustules for about 8 years before the raw milk drinking, but after getting sick/food poisoning from raw milk I started getting larger cystic pustules on chin and back which was a new occurrence for me.

H. pylori bacteria burrows in your stomach lining and produces ammonia which neutralizes the stomach acid. Lack of stomach acid makes it easier for H pylori to colonize gut and become chronic.

The standard medical treatment is triple therapy, i.e two types of antibiotics and a PPI. Some people get cured, and some don't due to antibiotic resistance, but H pylori often comes back. This is why I prefer the "natural" treatment with mastic gum, vitamin C and kefir (lots of real clinical studies on these compounds and H pylori). My appetite is back now so I think it could be quite effective.

No the small white pustules don't leave any scars for me, except the redness which fades. But I have gotten bigger cystic pustules that have left some minor scarring. On my jawline I got gigantic cysts that have left bigger scarring (after the raw milk experiment). Still my face looks remarkably good despite 10 years of chronic inflammation and pustules. My personality is scarred though lol.

 

I looked into a stool sample result of me I got when I had the pustules for little over a year and H Pylori was negative. Is this reliable? It was performed by a very good dermatologist but I wonder how realiable it is to not detect H Pylori in ones stool... I never had any of the H Pylori symptoms though (despite the Pustules and other skin issues). Luckily my other skin issues (cholinergic urticaria and/or rosacea) are completely gone. When I was 20 I literally had a whole year of red pustule ridden skin that stung and hurt whenever my core temperature raised. This event scarred my personality a lot and I used to be bound to my bed. The pustules are also gone if I don't drink milk (yayyy!). My personality is slowly healing while my skin has already 90 percent healed. This was achieved thanks to 4 month strict keto. I was assuming that now I can eat what I want and not break out but moderate amounts of Raw Milk will give me pustules for a week. I wonder if it is due to its rawness... I might try and drink pasteurized milk and see what happens. I ate selfmade pancakes made with buckwheat, eggs and milk, topped with mashed apples and pears, for the last days and haven't got a single pustule.

52 minutes ago, Eevs said:

I looked into a stool sample result of me I got when I had the pustules for little over a year and H Pylori was negative. Is this reliable? It was performed by a very good dermatologist but I wonder how realiable it is to not detect H Pylori in ones stool... I never had any of the H Pylori symptoms though (despite the Pustules and other skin issues). Luckily my other skin issues (cholinergic urticaria and/or rosacea) are completely gone. When I was 20 I literally had a whole year of red pustule ridden skin that stung and hurt whenever my core temperature raised. This event scarred my personality a lot and I used to be bound to my bed. The pustules are also gone if I don't drink milk (yayyy!). My personality is slowly healing while my skin has already 90 percent healed. This was achieved thanks to 4 month strict keto. I was assuming that now I can eat what I want and not break out but moderate amounts of Raw Milk will give me pustules for a week. I wonder if it is due to its rawness... I might try and drink pasteurized milk and see what happens. I ate selfmade pancakes made with buckwheat, eggs and milk, topped with mashed apples and pears, for the last days and haven't got a single pustule.

Honestly not completely sure. Some say you can have H pylori without it being picked up by diagnostic tests (i.e a weak positive shows up as a negative). Huh interesting... when my skin was worst I also got breakouts that looked like hives. They would develop over just a few hours and start to bleed and ooze pus. Literally had panic attacks all the time.

I am happy to hear your skin is healing, and that you are feeling better. Those pancakes sound good, I might try those.

Ever made kefir with the raw milk? I find I tolerate kefir better than just straight milk.

My goal is being able to not give a fuck at all and eat out and restaurants, drink wine/beer, live like a pig, etc, and have clear skin. Of course 95% of the time I eat very healthy but I wan't to have the option to eat whatever I want.I like having that freedom.

18 minutes ago, GrumpyPainter said:

Honestly not completely sure. Some say you can have H pylori without it being picked up by diagnostic tests (i.e a weak positive shows up as a negative). Huh interesting... when my skin was worst I also got breakouts that looked like hives. They would develop over just a few hours and start to bleed and ooze pus. Literally had panic attacks all the time.

I am happy to hear your skin is healing, and that you are feeling better. Those pancakes sound good, I might try those.

Ever made kefir with the raw milk? I find I tolerate kefir better than just straight milk.

My goal is being able to not give a fuck at all and eat out and restaurants, drink wine/beer, live like a pig, etc, and have clear skin. Of course 95% of the time I eat very healthy but I wan't to have the option to eat whatever I want.I like having that freedom.

I might do another H Pylori test as I read that, even without symptoms, the infection can lead so stomach cancer and other bad stuff later on...

I never made Kefir, I might try but I'm afraid the lactose will again cause pustules, even if it's Kefir and not Milk. As long as I am pustule free I am happy and don't have any other problems! In general, the only health problem I am facing is the pustules/acne proneness. Everything else about my body works flawless and I am happy about it.

Actually I think you can drink as much wine and beer as you want to, without getting the pustules. I never discovered a connection. Living like a pig I don't recommend haha, maybe once a week? Otherwise you are going to gain bodyfat which is probably the worst thing for overall attractiveness- I think you care about appereance as much as I do since our mental health took a huge toll from the unknown pustule disease. Seeing clear, naturally moist, vibrant and healthy looking skin in the mirror makes me insanely happy for instance. Clear skin combined with a low body fat percentage is what health looks like!

But I get that you want freedom, I want that to. To eat what I want and not having to think about possible pustule breakouts the next day. All this pustule paranoia is a huge burden for ones mental health.

3 hours ago, Eevs said:

I might do another H Pylori test as I read that, even without symptoms, the infection can lead so stomach cancer and other bad stuff later on...

I never made Kefir, I might try but I'm afraid the lactose will again cause pustules, even if it's Kefir and not Milk. As long as I am pustule free I am happy and don't have any other problems! In general, the only health problem I am facing is the pustules/acne proneness. Everything else about my body works flawless and I am happy about it.

Actually I think you can drink as much wine and beer as you want to, without getting the pustules. I never discovered a connection. Living like a pig I don't recommend haha, maybe once a week? Otherwise you are going to gain bodyfat which is probably the worst thing for overall attractiveness- I think you care about appereance as much as I do since our mental health took a huge toll from the unknown pustule disease. Seeing clear, naturally moist, vibrant and healthy looking skin in the mirror makes me insanely happy for instance. Clear skin combined with a low body fat percentage is what health looks like! 

But I get that you want freedom, I want that to. To eat what I want and not having to think about possible pustule breakouts the next day. All this pustule paranoia is a huge burden for ones mental health. 

Aye... I hear you. The mystery pustule disease has definitely messed with my head, for example I will immediately notice if someone else has any small acne or something that looks like white pustules. Of course I never point it out to people but I don't like how hyper-focused I've become on appearance and skin imperfections.

It's like my brain is constantly scanning for threats and will pick up the smallest imperfection in my skin and other peoples skin. Maybe this will go away with enough time pustule-free. I don't want to be so superficial/vain but just like you, it feels incredibly great to look in the mirror and see healthy, clear skin. Feels like a blessing. 

As I said, I'm messed up in the head

I am actually the opposite with diet, I am very lean and have difficulties with gaining weight so this pustule disease has caused me stop eating and drop weight and muscles. Good to know about beer and wine, I love beer. 

I believe we're all going to make it in this thread, we got many tools at our disposal now:

Keto/carnivore/elimination diets, benzoyl peroxide, seb derm creams, home-made kefir, vitamin C, oregano oil, etc, etc.

22 hours ago, Eevs said:

Now things get interesting. I developed the white pustules when I drank a lot of raw milk and ate a lot of raw meat (I NEVER took antibiotics). Both can be contaminated with H Pylori. So it could very well be that. 

Now, how does H pylori survive? What can I do to kill it? 

Also, did the pustules cause scarring for you? Are they even able to cause permanent scarring? For me they just cause a red spot that fades with time. So when I don't have a pustule for a long time (which only works by avoiding lactose and not eating a surplus and generally go easy on the fast digesting carbs) my face looks like I never had that shit. 

For me they are very superficial and heal pretty quickly/don't cause scarring... problem is that new ones constantly appear.

Just one day after my last post, I'm back to the status quo lol (there's one on the other side around the same spot too):

It's always like this for me, these things can appear so quickly. I can go to bed without any pustules and wakeup with these.

Or, I can wake up with no pustules but will end up with pustules like this by the end of the day

@Scorpy where you get the pustules makes the surrounding area red, the skin is compromised in this state and makes you more prone to getting more/ spreading. Ive had so many that look exactly like that.

can see from the photo you have seb derm, oily skin and thick facial hair which are some of the main precursers. Though the general condition of your skin looks very good, getting the oilyness under control will help you a lot.

@GrumpyPainter these fukers took over my life for years, it messed my head so much at one point i thought certain smells in the air caused them. drs used to make me rage by saying its all genetic and lifestyle doesnt matter while handing out antibiotics like candy

14 minutes ago, folliculitingg said:

@Scorpy where you get the pustules makes the surrounding area red, the skin is compromised in this state and makes you more prone to getting more/ spreading. Ive had so many that look exactly like that.

can see from the photo you have seb derm, oily skin and thick facial hair which are some of the main precursers. Though the general condition of your skin looks very good, getting the oilyness under control will help you a lot.

 

@GrumpyPainter these fukers took over my life for years, it messed my head so much at one point i thought certain smells in the air caused them. drs used to make me rage by saying its all genetic and lifestyle doesnt matter while handing out antibiotics like candy

I've found that the finacea actually seems to reduce the oilyness a lot... but also goes too far and makes my skin dry and flaky, so right now I'm experimenting with putting moisturizer on first | waiting a few minutes | and then applying the finacea and it seems to be helping, we'll see how it goes longer term.