1 hour 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 hear you about it taking over your life, you can get so far down the rabbit hole. At one point I thought the water from my shower could be causing this lol.  From everything I™m reading, it sounds to me like the most people have success with benzoyl peroxide, sulfur soaps(haven™t looked into that to much), and clean diet. I wanna try the benzoyl peroxide for a while but I™m still convinced I have a yeast problem so I don™t want to put any type of antibiotics soaps on my skin and make the yeast worse. I™ve been to two derms and first said it was def staph folliculitis and second one said def fungal issue, the second also did a culture which came back all negative for bacteria.  So idk what the best move is next. Still doing keto for now. 

duac worked very well for me, didnt sting or cause any flaking at all. ive never had to use it more than 2 days in a row, if im going out i always use it the night before in my most prone areas as a full proof method to make sure ill be clear

@Scorpy it could be the moisturizer im seeing lol, either way if its working keep it up

20 hours ago, Downshift636 said:

I hear you about it taking over your life, you can get so far down the rabbit hole. At one point I thought the water from my shower could be causing this lol.  From everything I™m reading, it sounds to me like the most people have success with benzoyl peroxide, sulfur soaps(haven™t looked into that to much), and clean diet. I wanna try the benzoyl peroxide for a while but I™m still convinced I have a yeast problem so I don™t want to put any type of antibiotics soaps on my skin and make the yeast worse. I™ve been to two derms and first said it was def staph folliculitis and second one said def fungal issue, the second also did a culture which came back all negative for bacteria.  So idk what the best move is next. Still doing keto for now. 

For months I ate only beef and white rice (PLAIN no spices) and was super paranoid about eating any other foods. Still had pustules though 

After that experiment I can't eat beef and white rice anymore. 

Hi guys, I think that the only thing that connects EVERYONE in here is the oily skin. I talked with really good derm some time ago and he said that it doesn't matter whether it is caused by some staph, gram negative  bacteria, mites or fungus. These things will always be around us and the problem occurs because in our oily skin we create them a perfect conditions to live and that results with abnormal count of them and causes inflammation. I think the only way to get rid of it is to get rid of oily skin, which is in fact very very hard I think the only options is to somehow lower our testosterone levels, do accutane course or recently i discovered there is a new laser called aviclear that calims to kill sebcious glands and reduce oil prpduction, pls see here https://www.cutera.com/solutions/aviclear/

Also, I think this thread is a little too big and it's hard to read it and make some conclusions. I think we should organize better. I created a separate forum dedicated to our conditon [Edited link out]. This way we can see how many people are actively struggling with it and connect with each other. I think each of as should answer the same questionaire with a lot of questions (like when it started, what we have tried, what works fine, what doesn't work, how old we are, and many many more). Together with questionaire we should post few photos of our condition. Then if we have a group of like 20-30 or more people and nice, standarized description and history of our condition maybe we can find some really good clinical dermatologist who would be interested to investigate with us this shit. If not, maybe we could fundraise some money and contact few really good world-class dermatologist who specialzie in skin infections so they could give their opinion. There would be many options but first thing would be to organize better, improve communiction and informaiton exchange and see how many of us still struglle with this and act like a group.

Here is my description [Edited link out] I encourage you to post your description in there. All new questions suggestions are very welcome.

1 hour ago, stylusc84 said:

 

i tried that laser in 2017 and it gave me enlarged pores, might not be the same one but i was invited to trial it before it was released

i agree with you about the oil, although not everyone with oily skin gets these but the oil seems to be the main trigger if you are prone.

dont mess around with your hormones, thats why i advise against keto because you are going to relapse hard

not sure you are allowed to advertise other websites on here, also not sure how many people you are trying to gather probably not even 1% of the population get these pustules so an entire forum for them seems a bit ott.

13 hours ago, stylusc84 said:

Hi guys, I think that the only thing that connects EVERYONE in here is the oily skin. I talked with really good derm some time ago and he said that it doesn't matter whether it is caused by some staph, gram negative  bacteria, mites or fungus. These things will always be around us and the problem occurs because in our oily skin we create them a perfect conditions to live and that results with abnormal count of them and causes inflammation. I think the only way to get rid of it is to get rid of oily skin, which is in fact very very hard I think the only options is to somehow lower our testosterone levels, do accutane course or recently i discovered there is a new laser called aviclear that calims to kill sebcious glands and reduce oil prpduction, pls see here https://www.cutera.com/solutions/aviclear/

Also, I think this thread is a little too big and it's hard to read it and make some conclusions. I think we should organize better. I created a separate forum dedicated to our conditon [Edited link out]. This way we can see how many people are actively struggling with it and connect with each other. I think each of as should answer the same questionaire with a lot of questions (like when it started, what we have tried, what works fine, what doesn't work, how old we are, and many many more). Together with questionaire we should post few photos of our condition. Then if we have a group of like 20-30 or more people and nice, standarized description and history of our condition maybe we can find some really good clinical dermatologist who would be interested to investigate with us this shit. If not, maybe we could fundraise some money and contact few really good world-class dermatologist who specialzie in skin infections so they could give their opinion. There would be many options but first thing would be to organize better, improve communiction and informaiton exchange and see how many of us still struglle with this and act like a group.

Here is my description [Edited link out] I encourage you to post your description in there. All new questions suggestions are very welcome.

Hey - I appreciate you taking the time and energy to make a website dedicated to the white pustules, but to be completely honest, I don't have any hopes that a doctor will come up with some perfect solution to this disease and save us all. We know already what the problem is - i.e Gram-negative folliculitis and/or Staph folliculitis - and as you mention Accutane is currently the "best" solution (with 1000 side effects).

There are actually lots of case studies on this white pustule disease available online, for instance this one:

"Marples  et al  [12],  confirmed an inverse ratio between nasal  carriers  of  S.  aureus  and  enterobacteria.  The proportion of Gram-negative bacteria results in a 1% of the  total  flora  under  normal  conditions.  In  the  case  of nasal  carriers  this  ratio  increases  3-4%,  being  nasal cavity the reservoir for facial cases of GNF [2,3]."  https://doaj.org/article/1c09c152c73e4c7fa48ccc0455fc4fc5

I can't remember where I saw it (possible on r/folliculitis) but there are case reports back from the 60's and 70's where people had this same white pustule disease, caused by prolonged antibiotic courses. 

For whatever reason, the skin flora and nasal mucosa has been semi-permanently altered causing these white pustules. Long courses of antibiotics can cause this dysbiotic shift, but some people here got the white pustules without taking any antibiotics so seems like a bad lifestyle, poor diet etc can do the same thing. I agree that the oily skin is a culprit, but not the root cause IMO. There are lots of people with oily skin without any acne or pustules. 

I am not trying to be some negative person and I do hope that we find something better than Accutane in the future. But if people want good results NOW then I would focus on the proven treatments such as BP gel or Finacea, together with lifestyle changes e.g improving gut health and eating a good diet. There are lots of us now in this thread that have fixed the pustule disease. 

the best treatment is buying a beachside hut in costa rica and spending 3 hours in the sea each day, then leaving the saltwater on your skin when you sleep. so go and ask your doctor for one

2 minutes ago, folliculitingg said:

the best treatment is buying a beachside hut in costa rica and spending 3 hours in the sea each day, then leaving the saltwater on your skin when you sleep. so go and ask your doctor for one

Bruh they are just going to give you antibiotics 

23 minutes ago, folliculitingg said:

i tried that laser in 2017 and it gave me enlarged pores, might not be the same one but i was invited to trial it before it was released

i agree with you about the oil, although not everyone with oily skin gets these but the oil seems to be the main trigger if you are prone.

dont mess around with your hormones, thats why i advise against keto because you are going to relapse hard

not sure you are allowed to advertise other websites on here, also not sure how many people you are trying to gather probably not even 1% of the population get these pustules so an entire forum for them seems a bit ott.

Have you ever tried carnivore diet with carbs sources such as fruits, fruit juice, fermented dairy, honey? Meaning NO starches or grains. 

I have a theory that complex carbs like rice, potato, pasta, bread can feed bad bacteria (e.g Klebsiella pneumoniae) in some individuals. Fruits, honey, simple sugars, dairy, are pretty much 100% absorbed in the small intestine, leaving nothing for fermentation by bad bacteria in the colon. 

4 minutes ago, GrumpyPainter said:

Bruh they are just going to give you antibiotics 

yep and it makes it worse and ruins your health too lmao

tbh, i think prolonged antibiotic use could be a big factor because its not just from the doctor, all the meat, milk, even tap water contains them.

i am not sure when i started getting them but i remember i had very minor acne and my friend told me to go and get anti biotics and then years later id done accutane to get rid of them.

i feel very uneasy when i think how many people are on pills from the dr these days, there are lots of people who take 10+ pills a day and it is all ending up in the water supply

@folliculitinggi don't think this is the laser which you tried, i think what you tried is the sebacia laser. This thing is completly new, approved few months ago and uses 1726 nm wavelength not used before.

@GrumpyPainter, you said:

Quote

There are lots of us now in this thread that have fixed the pustule disease.  

could you tell me who exactly cured this permanently and how?

I also agreee that it is impossible to gather all people with this disease in one place but I think that every way to facilitate communication and information exchange is better than one thread wih 40 pages. Gathering even 0.1% of all people is fine for me and beter than what we have now.

I also have bad experience with doctors but if we would form a group of at leat 10-15 people with well described history in one place we can for example contact authors of for example this research which GrumpyPainter just mentioned and see what they say  and if they are interested to investigate it. I'm pretty sure we would fine some team that would be interested in our problem.

I don't know guys, i think we should organized better and be more active about it, not just use benzoyl peroxide and wait for years for magical cure. We need to be more active. But it's up to you, I at least tried  

17 minutes ago, stylusc84 said:

 

@GrumpyPainter, you said:

could you tell me who exactly cured this permanently and how?

 

See posts from: @healthyalmonds@Canucklehead12@silverlight22@Eevs@GrumpyPainter@jcbdigger365@UnusualClub

All have gotten rid of white pustules using a mix of healthy diet/lifestyle changes, benzoyl peroxide, Finacea, nasal decolonization.

Thanks, I'll read their posts. But I consider cured as state when you don't use anything and you are clear. You mentioned that they did it with BP, finacea and nasal spray. Did you mean that they need to use all of these to be clear or at some point in time they stopped using these and are still clear?

17 minutes ago, stylusc84 said:

 

yes i tried the sebacia one, still have damage from it

@GrumpyPainter i have not tried that 100% but i know it is effective, i am eating for optimal hormones at the moment and do have rices, pasta and sourdough breads. i know my testosterone is high atm for obvious reasons but also my face is oiler and i get spots on my back.

also are you guys big? wide frame, naturally athletic? and need to eat a lot more than the average person?

i only know 1 other person who gets these IRL and hes an 6 foot 3 whose wide asf and weighs 90kg+

i have gained 7kg since January and the bigger load on digestive system makes a difference, but also i know my hormones have increased...i tested testosterone at 600 in Jan I would guess im at least 800 now

if your hormones are constantly going up and down its not ideal, thats why my original theory was to get in an optimal state then try to maintain it, think of puberty and how common spots are during the growth phase.

i think @Eevs experienced the same thing, also tons of steroid users start getting a lot of acne even if they never had any before

13 minutes ago, stylusc84 said:

Thanks, I'll read their posts. But I consider cured as state when you don't use anything and you are clear. You mentioned that they did it with BP, finacea and nasal spray. Did you mean that they need to use all of these to be clear or at some point in time they stopped using these and are still clear?

No I meant that some used only BP, some used Finacea, some used diet, etc, to maintain clear skin.

I can't recall all the details and most stopped posting here years ago, presumably because who wants to visit the "white pustule thread" when you have achieved clear skin LOL. I do know that@Eevscured it without using any topicals.

I understand wanting to get rid of this permanently and not have to use band-aids to treat symptoms. Again, Accutane may or may notcause white pustules to go away. There are people here who took Accutane 1-2 times and still have pustules.

I am okay with using BP for 2-3 minutes every other day. That's 6-9 minutes of benzoyl peroxide on my mouth and chin area per week and I have clear skin and can eat whatever I want. But everyone has to weigh the pros and cons themselves. If I have white pustules I get horrible depression which makes live unbearable, so I chose to use topical treatments. I'm never going to a doctor again because they caused these pustules and other health issues for me with their reckless prescription of antibiotics.

As I answered in the forum i created, my testosterone level are very high, about 1100, and i have never taken any steroids etc. I'm not big cause i don't workout and don't eat a lot because i'm afraid everything breaks me out. But this testosterone level is for sure one of the causes of excess sebum production which in my opinion is major cause of these breakouts. I think why accutane works in our case is because it makes your skin dry and whatever gives you the pimples (bacteria, staph, fungies) die because they don't have food.

2 minutes ago, stylusc84 said:

 

i agree, i notice direct relationship with increased testosterone and pustules

but the skin only remains oily while it is changing, once you reach balance within your body everything calms down

thats why steroid users get horrific acne becasue their body cannot naturally get near those levels, we probably have naturally high cieling for testosterone levels and at least for me, my lifestyle has caused the levels to yoyo which meant i never reached that balance that most do after puberty

16 minutes ago, stylusc84 said:

As I answered in the forum i created, my testosterone level are very high, about 1100, and i have never taken any steroids etc. I'm not big cause i don't workout and don't eat a lot because i'm afraid everything breaks me out. But this testosterone level is for sure one of the causes of excess sebum production which in my opinion is major cause of these breakouts. I think why accutane works in our case is because it makes your skin dry and whatever gives you the pimples (bacteria, staph, fungies) die because they don't have food.

This is an interesting paper on Accutane for GNF:

"Thirty-two patients with gram-negative folliculitis were treated with 0.47 to 1.0 mg/kg/day of isotretinoin. Serial microbiologic evaluations demonstrated rapid clearing of the face and nasal mucosa of gram-negative rods. The clinical response was rapid, complete, and induced prolonged remissions. Twenty-six of thirty-two patients developed Staphylococcus aureus nasal carriage by the end of the 20-week treatment course. Isotretinoin has decided advantages over previously reported therapies for gram-negative folliculitis." https://www.sciencedirect.com/science/article/abs/pii/S0190962285800438

Seems like Accutane is a bit of a double-edged sword. Accutane will get rid off GNF... only you will get Staph aureus instead which can cause new pustules.

11 minutes ago, folliculitingg said:

i agree, i notice direct relationship with increased testosterone and pustules

but the skin only remains oily while it is changing, once you reach balance within your body everything calms down

thats why steroid users get horrific acne becasue their body cannot naturally get near those levels, we probably have naturally high cieling for testosterone levels and at least for me, my lifestyle has caused the levels to yoyo which meant i never reached that balance that most do after puberty

Do you and everyone else here drink lots of coffee? Coffee increases testosterone A LOT and it dehydrates the skin, which causes it to overproduce oil.

I stopped drinking coffee for 2 weeks and my skin looked so much more moisturized and balanced. Then I started again and back to oilier skin. It is difficult to break the coffee addiction.

edit: And yes to answer your question I am naturally pretty muscular but don't work out any longer like I used to. Before I was into bodybuilding but can't say if pustules were worse or not. Bulking with rice, pasta, bread, dairy produces lots of back acne however.

3 minutes ago, GrumpyPainter said:

 

no i dont drink coffee atm, havnt in years

just increased calories and eating things like eggs, fatty fish and red meat daily

i took accutane for pustules and i remember they cleared within a few days and didnt get any more for 5ish years

mine isnt severe at all now, if you looked at me you would not notice but its not cured and i did just have some strange flare up where i got the BP cream from dr, but that was not typical pustule it was more like an infection

@GrumpyPainter so why are you still watching this thread? By your definition being clear thanks to daily use of BP is considered "cured", but because of some reason you still watch this thread. For me BP also works great for pimples but it gave me other condition, which is probably rosacea, because BP irritates my skin and after ~7 years of using BP daily my skin is not in a great condition and i don't think it is something i could use for another 7 years.

Also, I don't think that because some users stop posting here it means they are cured. I would rather bet that as you, they are still daily users of BP/put hibiclens in their nose (which i tihnk is more risky than taking accutane) and the condition is more or less managable this way and they just don't post here cause they don't have anything new to say (like me for last 2 years).

I also encourage you all not to do regular culture test from the lesion but to do this method https://www.frontiersin.org/articles/10.3389/fmicb.2015.00791/full Regular culture test might not detect every bacteria cause it's hard to grow some species. At the beginnign of my problem i did regular culture test and nothing was discovered. About a year ago i did another test with this metod and gram negative bacteria was discovered.

Also, saying that you will never go to a doctor again is not so smart. There are of course many doctors who are idiots but I also think there are good ones. Some of these doctors are very experienced and have seen A LOT. I think finding solution by yourself without any help from doctors/professional procedures/tests is very limiting.

Also, caffeine is a trigger for my so i don't drink coffee.

You see, there are a lot of things that we have in common, we should really try to create some community, this thread is really bad at the moment.

2 minutes ago, stylusc84 said:

 

i dont visit the dr anymore either, unless its for something i know specifically and even then the chances are they wont prescribe it for me and offer me some alternative which has 10x more sides

you cant forget the damage the drs have done to you once you realise what all these drugs do

even the cosmetic derms, very very few people get good results from lasers and other treatments...i think more get botched and come home with even worse skin, the truth is noone really wants to help you except yourself

we all come here because we went through the same thing, and there is always new things to learn and discuss, even if you are 99% clear...but theres only a handfull of active posters so an entire website seems like overkill

3 minutes ago, stylusc84 said:

 

I am here because I have some free time and am trying to help people to get rid off the white pustules. Maybe someone listened to my advice and cured their pustules and depression. Soon I will be busy with school/work/life which means I won't be posting here as frequently.

If I went to a dermatologist they'd give me either antibiotics or Accutane which I don't want to take for obvious reasons. In fact I have never gotten any help from any doctor, have gotten much better results from my own research and trial and error.

I do agree with you that this thread is not the best platform for discussion or coming up with solution, it is very difficult to identify patterns and and what works/doesn't work scrolling through 40 pages. I hope that your website works out however and brings some new answers!

for me, it appeared out of nowhere, before I visited any of the doctors, so i don't blame doctors for this, even though no one was able to cure it permanently yet.

I think that even if there are only two of us at the moment, having a place where you can have multiple simultanteous threads about different topics. separated with each other is better than this single gigantic thread, it encourages to discussion. Maybe with time the forum would grow bigger and could be found from google, i don't know, just thought that it will help, but if you think it doesn't make sense then ok.

In this case I'll be just checking this current thread once in a while and post if i have anything meaningful to share. Good luck guys, i hope we will find something that works permanently!

@stylusc84 what age did you start getting it and was it during a physical growth phase like puberty?

also what age range are you in and have you been getting them consistantly for that entire time?

have you had hormonal issues?

@stylusc84very good initiative with the website. Don't listen to people who says that there is no point to try to find a good solution and collecting data. I had this problem for very long time and it affected my life very dramatically. Currently I have it under control unless I have sex that is the main trigger for me (and the biggest tragedy). I researched and systemized a lot information from all forums and literature on acne in search of solution. Currently my main hypothesis is oversensitive sebocyte glands to androgens + some other factors. People with acne has sebocyte androgen sensitivity up to 25 times of non acne individual. Once androgen receptors activated inflammation response is turned on that leads to acne. I was always thinking that bacteria played important role in pathogenesis of this condition but after reading latest literature on acne and observing my own condition I have started to really doubt it. I think benzoyl peroxide is very effective for this condition because is reduces inflammation (and not because it targets bacteria).

I was also thinking to find some researches who could help me identify root causeby doing test in the lab as doctors don't have this ability (and even willingness, they just act based on textbooks).

I will fill in questionnaire once I have time. If you need any help, DM me.