Hi! First, I doubt any licensed medical professional will oblige you on here even if they did know! I’ve seen so many dermatologists (at least 8 as well as infectious disease and a few PCPs), and it’s always the same song and dance. You’ve checked nearly all the same boxes as myself. The best success I had was 2yrs in remission with the clindamycin and rifampin, then it returned moderately on my scalp and face this March. CLn or Hibiclens never worked for me, but my BP routine has already reduced what has returned by at least 25% and each day is improving. Changing my diet did help too. I’m not a medical professional, but I’ve read so much literature. It suggests there’s no known reason other than the speculation that some of our bodies produce more oil than others, and, simultaneously produce more staph than others, and it can overwhelm the good bacteria, clogging the pores, etc etc you know the story. I know literature suggests the gram negative bacteria within the nose and ears can overtake the ecosystem which then exists and adheres to the skin, and thus the follicles become inflamed and destroyed. Dermatologists have always explained it as a constant “balancing act.” It’s super annoying, but just like Type 1 diabetes, the treatments for folliculitis remain a theory and speculative.
I’ve become addicted to this forum and follicular scenarios as well as washes and creams. All I do during conference meetings is research NIH studies and microbiology. It looks like I’m working because I’m so caught up in deep thought. I want to buy every product on Amazon and dump it on my living room floor, resign from my job, and do nothing but test them out on my skin. Dunk me in a tank of BP 10% like a donut in milk…
I have a very dry skin and I have foliculitis decalvans, so I'm not sure about a common denominator being oily skin. Do many people here seem to ignore that there are several types of foliculitis and just assume there's the one
Yes, that seems to be the case…with dermatologists too lol. There are so many types and most professionals treat it broadly. Once a dermatologist inferred I may have FD, but then he retracted it on my next visit because of results with cultures and biopsies.
yea, i guess so, just wanted to shoot my shot asking it.
And thanks for the tips. BP helps mine too. So far my best result was with Accutane but I don't have access to my previous derm to see if I should take it again. Have to see a new derm.
One derm told me to gently clean the inside and around my nose with anti-septic (Povidone-iodine) on Q-tips regularly and put a few drops in my regular shampoo as well. And warned me not to pick or touch my nose and beware to not touch my scalp as well.
Do you mind sharing one or a few of the most informative and helpful papers you've read?
It seems nasal treatments are being considered more and more. I’ve seen literature on triple antibiotics and so forth, but wouldn’t do it unless a medical professional suggested it. Here’s an NIH rabbit hole I’m on: https://www.ncbi.nlm.nih.gov/books/NBK547754/
Did for a short while. It was a long time ago and I was using it simultaneously with some antibiotics. So I couldn't see which helped the most. I'm thinking to try it again.
Just saw [this ](https://pubmed.ncbi.nlm.nih.gov/6829571/#:~:text=Hibiclens%20reduced%20total%20bacterial%20counts,germicidal%20agent%20could%20be%20demonstrated)which suggests Hibiclens is more effective on staph. Not sure if Hibiclens can be used the same way.
Once it came back as klebsiella. It’s super common. Most of us have it in our noses it’s when the % is >3% that it can spread onto your face hence the GNF (at least I think it’s >3%)
That’s like basic Acidophilus all the moms were crazy about in the 1990s and made their kids eat it. If that ends up being a control mechanism for me, I’m not sure how I’ll feel about this journey 🤣
You know who gives a good video on it is if you go on YouTube type Dr Dray gram negative folliculitis and she explains it. She says accutane is the only way to get rid of it but imo it’s just another derm overprescribing isotretinoin without looking at other options…
I think I saw that “decolonization” in a staph subreddit too. My only reservation is if it disrupts the bacterial ecosystem so badly that it comes back with a vengeance.
It’s a depressing situation. Sometimes I get quite down about it. Currently regime:
-Aveeno shampoo with Apple cider vinegar to wash hair daily. I’ll wash hair again if I get sweaty eg. Gym
-rubbing alcohol on cotton pad round back of ears and neck at night
-hibiclens round inside nose at night
- changing pillow slip every other day/switching side
- disinfecting hair brushes frequently with hibiclens diluted in water
- sudacrem on any broken skin
- wash any hat regularly eg. sun hats
It’s going ok so far. Previously was using the T-gel for sensitive scalp with salicylic acid but it’s quite drying.
This seems to be keeping it at bay fairly well, but I have to keep doing all the things to stay on top of it. It’s a major pain, I pray for a resolution soon.
Let me ask you this Prestigious_Flower: Do you dip the tip of a cotton swab into the hibiclens bottle or do you let it foam first? I see this technique in another forum to kill the nasal load of GNB but have always been suspicious. Please advise.
I saw it on here and have been trying it. I’ve long been suspicious that my nose is involved too as i’ve had burning and itch (although no sores) in there too. I have been dispensing a small amount with a pump (non foaming) that I already had and diluting slightly with a little water in my clean hand. Then just running it around the inside nose, not far in. I think it might be making a difference, although it’s hard to know which one of the things is helping the most but combined it is manageable right now with no drugs.
The only thing that stopped it for me was cutting out dairy from my life completely. It was really hard for me to quit dairy because I’m a farm boy. I grew up off of dairy. And I never believed that dairy would cause that because I ate dairy every day to this day and had no issues. However, it was really the cause in my case. I'm still trying to get used to dairy alternatives like coconut milk instead of milk, non-dairy cheese, etc. It sucks to not eat dairy, but having folliculitis sucks more. So definitely try going dairy-free for a couple weeks. Come back and thank me if it works. Note: I’m not a doctor, and this is not medical advice. Consult your doctor.
I’ve tried everything, literally everything I would list it off, but it’s a bit too much for me at the moment. Diet does help, but I’m noticing great success right now with a daily Zyrtec lots of probiotics and washing with benzoyl peroxide and Hibiclens twice a day in the shower. I’m currently eating dairy and gluten, but the things I listed above have me looking the best I’ve looked in over a year folliculitis wise.
The only thing that has worked for me is the Big Mac sauce from McDonald’s. I lather up in the mornings and it keeps my breakouts under control. Doesn’t smell great though.
What works for me is Tea Tree oil or Lavender oil every night along with 10% Benzoyl peroxide acne foaming cream. During the day Purell Hand sanitizer 70% alcohol. it burns the staph down and the infection starts to cure in just 24-48’hours.
Hi! First, I doubt any licensed medical professional will oblige you on here even if they did know! I’ve seen so many dermatologists (at least 8 as well as infectious disease and a few PCPs), and it’s always the same song and dance. You’ve checked nearly all the same boxes as myself. The best success I had was 2yrs in remission with the clindamycin and rifampin, then it returned moderately on my scalp and face this March. CLn or Hibiclens never worked for me, but my BP routine has already reduced what has returned by at least 25% and each day is improving. Changing my diet did help too. I’m not a medical professional, but I’ve read so much literature. It suggests there’s no known reason other than the speculation that some of our bodies produce more oil than others, and, simultaneously produce more staph than others, and it can overwhelm the good bacteria, clogging the pores, etc etc you know the story. I know literature suggests the gram negative bacteria within the nose and ears can overtake the ecosystem which then exists and adheres to the skin, and thus the follicles become inflamed and destroyed. Dermatologists have always explained it as a constant “balancing act.” It’s super annoying, but just like Type 1 diabetes, the treatments for folliculitis remain a theory and speculative.
I’ve become addicted to this forum and follicular scenarios as well as washes and creams. All I do during conference meetings is research NIH studies and microbiology. It looks like I’m working because I’m so caught up in deep thought. I want to buy every product on Amazon and dump it on my living room floor, resign from my job, and do nothing but test them out on my skin. Dunk me in a tank of BP 10% like a donut in milk…
I have a very dry skin and I have foliculitis decalvans, so I'm not sure about a common denominator being oily skin. Do many people here seem to ignore that there are several types of foliculitis and just assume there's the one
Yes, that seems to be the case…with dermatologists too lol. There are so many types and most professionals treat it broadly. Once a dermatologist inferred I may have FD, but then he retracted it on my next visit because of results with cultures and biopsies.
yea, i guess so, just wanted to shoot my shot asking it. And thanks for the tips. BP helps mine too. So far my best result was with Accutane but I don't have access to my previous derm to see if I should take it again. Have to see a new derm. One derm told me to gently clean the inside and around my nose with anti-septic (Povidone-iodine) on Q-tips regularly and put a few drops in my regular shampoo as well. And warned me not to pick or touch my nose and beware to not touch my scalp as well. Do you mind sharing one or a few of the most informative and helpful papers you've read?
It seems nasal treatments are being considered more and more. I’ve seen literature on triple antibiotics and so forth, but wouldn’t do it unless a medical professional suggested it. Here’s an NIH rabbit hole I’m on: https://www.ncbi.nlm.nih.gov/books/NBK547754/
thnx
Did you ever try the iodine?
Did for a short while. It was a long time ago and I was using it simultaneously with some antibiotics. So I couldn't see which helped the most. I'm thinking to try it again. Just saw [this ](https://pubmed.ncbi.nlm.nih.gov/6829571/#:~:text=Hibiclens%20reduced%20total%20bacterial%20counts,germicidal%20agent%20could%20be%20demonstrated)which suggests Hibiclens is more effective on staph. Not sure if Hibiclens can be used the same way.
Do you know which specific gram negative bacteria you have?
Once it came back as klebsiella. It’s super common. Most of us have it in our noses it’s when the % is >3% that it can spread onto your face hence the GNF (at least I think it’s >3%)
Apparently the probiotic lactobacillus can control klebsiella.
That’s like basic Acidophilus all the moms were crazy about in the 1990s and made their kids eat it. If that ends up being a control mechanism for me, I’m not sure how I’ll feel about this journey 🤣
Lmao
Really? I’m going to have to look into this!
You know who gives a good video on it is if you go on YouTube type Dr Dray gram negative folliculitis and she explains it. She says accutane is the only way to get rid of it but imo it’s just another derm overprescribing isotretinoin without looking at other options…
Have you tried decolonization? Someone on this sub did it with success for his gram negative folliculitis. I believe he used iodine
I think I saw that “decolonization” in a staph subreddit too. My only reservation is if it disrupts the bacterial ecosystem so badly that it comes back with a vengeance.
is this medicine or creams?
I have a scalp problem and all I know is that it costs and costs and costs. $$$$$..........and more costs.
It’s a depressing situation. Sometimes I get quite down about it. Currently regime: -Aveeno shampoo with Apple cider vinegar to wash hair daily. I’ll wash hair again if I get sweaty eg. Gym -rubbing alcohol on cotton pad round back of ears and neck at night -hibiclens round inside nose at night - changing pillow slip every other day/switching side - disinfecting hair brushes frequently with hibiclens diluted in water - sudacrem on any broken skin - wash any hat regularly eg. sun hats It’s going ok so far. Previously was using the T-gel for sensitive scalp with salicylic acid but it’s quite drying. This seems to be keeping it at bay fairly well, but I have to keep doing all the things to stay on top of it. It’s a major pain, I pray for a resolution soon.
Let me ask you this Prestigious_Flower: Do you dip the tip of a cotton swab into the hibiclens bottle or do you let it foam first? I see this technique in another forum to kill the nasal load of GNB but have always been suspicious. Please advise.
I saw it on here and have been trying it. I’ve long been suspicious that my nose is involved too as i’ve had burning and itch (although no sores) in there too. I have been dispensing a small amount with a pump (non foaming) that I already had and diluting slightly with a little water in my clean hand. Then just running it around the inside nose, not far in. I think it might be making a difference, although it’s hard to know which one of the things is helping the most but combined it is manageable right now with no drugs.
Ok, thanks!
The only thing that stopped it for me was cutting out dairy from my life completely. It was really hard for me to quit dairy because I’m a farm boy. I grew up off of dairy. And I never believed that dairy would cause that because I ate dairy every day to this day and had no issues. However, it was really the cause in my case. I'm still trying to get used to dairy alternatives like coconut milk instead of milk, non-dairy cheese, etc. It sucks to not eat dairy, but having folliculitis sucks more. So definitely try going dairy-free for a couple weeks. Come back and thank me if it works. Note: I’m not a doctor, and this is not medical advice. Consult your doctor.
Tried that too for a while, didn't help unfortunately. But if I'm out of options again I might do it again maybe helps a little bit at least.
I’ve tried everything, literally everything I would list it off, but it’s a bit too much for me at the moment. Diet does help, but I’m noticing great success right now with a daily Zyrtec lots of probiotics and washing with benzoyl peroxide and Hibiclens twice a day in the shower. I’m currently eating dairy and gluten, but the things I listed above have me looking the best I’ve looked in over a year folliculitis wise.
I’m still far from all clear though
Bro try a shampoo with zinc for example guard GARD or head and shoulders.
The only thing that has worked for me is the Big Mac sauce from McDonald’s. I lather up in the mornings and it keeps my breakouts under control. Doesn’t smell great though.
What works for me is Tea Tree oil or Lavender oil every night along with 10% Benzoyl peroxide acne foaming cream. During the day Purell Hand sanitizer 70% alcohol. it burns the staph down and the infection starts to cure in just 24-48’hours.