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Severe folliculitis in my scalp
I have had this painful problem for years (9 years and 6 month to be exact). I am 40 years old, male, from Canada. Here's how the problem started. Tiny red bumps and they endup with the white thing on it on top of the scalp back in around 1999, they got very itchy and they blood and white things will be discharge from the pinples. After a few months, I went to a dermatologist, he prescribed me with antiboitic and shampoo and cream and lotion . i used them for 3 month and after i stoppped few one month after I had them back on my scalp and face.I called my dermotologist booked an apt and i saw him and said i should take accutane 40mg daily and antibiotic for 6 month and keep on using the stieprox shampoo for fungus , so i did that and i my scalp and face they got better , so after 6 month i was done my medication course went back for finale visit and he said that i am done .
after 5 to 6 month after the treatment same issue is back i went and i saw my family Dr and he said to go back and see my dermotologist so i called book an apt , i went for my apt and same thing he want me to be back on accutane for 4 month this time and the stieprox shampoo and other shampoo brand i can't recall . so i did that and after 3 weeks my scalp face look better and after 4 month everything was cleared saw my dermotologist and he was satisfied with the result again , so he said to stop treatment and i did.
after 4 to 5 month same issue i endup with than made me think more , went to my family Dr we talked and he recommend to see a another dermotologist than the one i was seeing so i agree and we went through that
same treatment for 6 month and i did it and after 5 to 6 month same issue i changed over 10 dermotologist and on off on antibiotic and accutane and shamppo and lotions dalacin ....and till today's day no luck same issue and all this dermotologist did culture and was negative result and they did alergy test negative tooo, few weeks ago as per oct 24 2009 a saw a new dermotologist she did a culture and the result endup with Citrobacter koseri in my scalp and she said that the cause was from the antibiotic however i am still taken till now antibiotics , and she want to reffere me to another specialist who deal with the bacteria issue's so now i am waiting for my apt . honestly after all those yrs i had the worse time in my life , and i can't beleive that some dermotologist didnt care less for my situtation , i am loosing sleep and is effecting my daily life and i am looking for a solution please helppppppp.
PS i did tryed all kind of prescription shampoo ,lotion,cream,antibiotic,accutane ,cureacne , i spend over 12000 dollars and no luck , and i endup a one year ago with a damaged lazy liver i had to stop accutane and take other medication to get my liver back to normal situtation please helpppppppppppppppppppppp
now i am under antibiotic but however not doing the job at all and all it's doing is controlling the bumps a little. Like 1 week of the month, I will have 70% clear scalp. The other 3 weeks, I'll have 30-40 spots .
These spots are extremely painful, sometimes I can't sleep right since the scalp pushes against the pillow. I have to wait upto 3 weeks before scalp is somewhat clear so I can get a haircut, even the past few month i don't go to a barber anymore i cut mine with number one hair cliper
From all my research, this seems like extreme stubborn case of folliculitis, but I don't even know anymore what to do. Please, anyone out there, help me. I'm willing to pay you if you can help solve this problem
This discussion is related to Severe Scalp Folliculitis (Seen 4 Dermatologist already).
after 5 to 6 month after the treatment same issue is back i went and i saw my family Dr and he said to go back and see my dermotologist so i called book an apt , i went for my apt and same thing he want me to be back on accutane for 4 month this time and the stieprox shampoo and other shampoo brand i can't recall . so i did that and after 3 weeks my scalp face look better and after 4 month everything was cleared saw my dermotologist and he was satisfied with the result again , so he said to stop treatment and i did.
after 4 to 5 month same issue i endup with than made me think more , went to my family Dr we talked and he recommend to see a another dermotologist than the one i was seeing so i agree and we went through that
same treatment for 6 month and i did it and after 5 to 6 month same issue i changed over 10 dermotologist and on off on antibiotic and accutane and shamppo and lotions dalacin ....and till today's day no luck same issue and all this dermotologist did culture and was negative result and they did alergy test negative tooo, few weeks ago as per oct 24 2009 a saw a new dermotologist she did a culture and the result endup with Citrobacter koseri in my scalp and she said that the cause was from the antibiotic however i am still taken till now antibiotics , and she want to reffere me to another specialist who deal with the bacteria issue's so now i am waiting for my apt . honestly after all those yrs i had the worse time in my life , and i can't beleive that some dermotologist didnt care less for my situtation , i am loosing sleep and is effecting my daily life and i am looking for a solution please helppppppp.
PS i did tryed all kind of prescription shampoo ,lotion,cream,antibiotic,accutane ,cureacne , i spend over 12000 dollars and no luck , and i endup a one year ago with a damaged lazy liver i had to stop accutane and take other medication to get my liver back to normal situtation please helpppppppppppppppppppppp
now i am under antibiotic but however not doing the job at all and all it's doing is controlling the bumps a little. Like 1 week of the month, I will have 70% clear scalp. The other 3 weeks, I'll have 30-40 spots .
These spots are extremely painful, sometimes I can't sleep right since the scalp pushes against the pillow. I have to wait upto 3 weeks before scalp is somewhat clear so I can get a haircut, even the past few month i don't go to a barber anymore i cut mine with number one hair cliper
From all my research, this seems like extreme stubborn case of folliculitis, but I don't even know anymore what to do. Please, anyone out there, help me. I'm willing to pay you if you can help solve this problem
This discussion is related to Severe Scalp Folliculitis (Seen 4 Dermatologist already).
I had my doctors visit a couple days ago. They said I have tried everything and their records went back to 2003. They decided to put me on Accutane and I had my first blood draw yesterday. Not happy about no alcohol for 6 months, but if it gets rid of this crap, I guess that's what I have to do. I did want to mention that has a kid we ate a ton of pizza. Some of this condition is yeast related. Currently I do not each has much pizza, but I do enjoy some beer from time to time. I dropped 30 pounds about 2 years ago and changed my eating habits to be more healthy. The problem still persisted. Hoping the Acutane works without any side effects.
Hello everyone, despite having this condition for almost 9 years i am glad to know i am not alone in this struggle.
Something i have done has really helped bring it down by about 80 percent and that was using apple cider vinegar diluted with water on my scalp 3 times a week during the morning shower. However even at 20% i am extremely unhappy with the condition.
When i took augmentine antibiotic for a tooth infection a side effect was that it cleared up my scalp 100%. For about two weeks i was living in the clouds unable to believe how amazing running my hands through a clear scalp felt.
However after two weeks they returned, still not as bad as before the apple cider vinegar, but bad enough that i will pursue a cure for as long as it takes me.
Heres hoping we kill this disability together.
Something i have done has really helped bring it down by about 80 percent and that was using apple cider vinegar diluted with water on my scalp 3 times a week during the morning shower. However even at 20% i am extremely unhappy with the condition.
When i took augmentine antibiotic for a tooth infection a side effect was that it cleared up my scalp 100%. For about two weeks i was living in the clouds unable to believe how amazing running my hands through a clear scalp felt.
However after two weeks they returned, still not as bad as before the apple cider vinegar, but bad enough that i will pursue a cure for as long as it takes me.
Heres hoping we kill this disability together.
I took accutane back in 1985 while in high school, it worked wonders until about 1990. Then the scalp foliculitus returned. I have been offered accutane 2 or 3 times since by the different dermatologists I have seen and we have discussed low dose vs. regular dose as well. My wife will not let me go on this drug again in fear of the high cholesterol you get while taking it. My regular cholesterol reading is right around 200 and the doctors agree that it will go up to 400 while on the drug and I know it is just a matter of time before it returns. I have a dermatologist appointment next week and currently I am riding out a big outbreak. I have stopped all topicals except the prescription shampoo. Since it is hotter out here now, I have been showering in the am and pm. I will repost after my appointment.
After getting another severe outbreak which left me heart-broken and in tears, I decided to go on accutane again. This is my 3rd time, but this time I'm taking a much lower dose of 20mg every other day. (a year ago I was on 40mg every day).
In just 3-4 weeks my folliculitis has disappeared. I have maybe 1 or 2 white heads, but nothing major. They should be gone in a couple of days. The only side effect is slightly dry skin. I've read about low-dose accutane and I'm hoping it is my solution without being too harmful.
Thanks ARioseco for sharing your story, but I want to warn you all that when I tried washing my hair just with water, I ended up getting Folliculitis Decalvans which I've been dealing with for the past 2 years. I was also on accutane at the time, so my theory is that my scalp got too dry and sh*t hit the fan. It's a terrible distressing condition and has limited my social life severely.
In just 3-4 weeks my folliculitis has disappeared. I have maybe 1 or 2 white heads, but nothing major. They should be gone in a couple of days. The only side effect is slightly dry skin. I've read about low-dose accutane and I'm hoping it is my solution without being too harmful.
Thanks ARioseco for sharing your story, but I want to warn you all that when I tried washing my hair just with water, I ended up getting Folliculitis Decalvans which I've been dealing with for the past 2 years. I was also on accutane at the time, so my theory is that my scalp got too dry and sh*t hit the fan. It's a terrible distressing condition and has limited my social life severely.
I have tried a gluten free diet a few years back. It helped a little but then the symptoms returned. The thought of not washing with shampoo or just plain water is interesting. Here's why, I used to live in Chicago and we had Lake Michigan water. Now I live in a suburb and we have treated well water. Since I have lived in this suburb my condition has been more noticeable. When I lived in the city it was less. Also I have noticed that when I am on vacation ( Mexico or Wisconsin) the symptoms clear up greatly. It is less stress but also in Wisconsin the water is untreated well water. Currently I am dealing with a severe outbreak. I am stopping all topicals. The kitikiti did work but now it is summer and very hot so it is not working well in the heat, but does when it is colder. Thanks to everyone for your input.
Hi to all, my name is Andrew and I'm a 32 yo engineer. Please excuse my english...it's a bit rusty. I will tell my story its a bit long so bear with me, because it has a nice ending....not completely cured but I'll say 99.9% and improving every day since 6 months now, after having it for 20 years.
I too suffer from this terrible disease and have it since I was 12yo, and now I'm 32. I have tryed every antibiotic already named here (doxy, minocycling, ciprofloxaxin, flucloxaciclin etc). Apart from those I've been on accutane 3 times (20 to 10mg), and I can say that it was the only drug that has really worked the longest too. The thing is that when I stopped taking it, it always returns like 3 to 5 months after. I've also tryed dapsone, itraconazole and fluconazole. I must say my dad is one of the top MD's in my country, so the drugs or derm appointments were never a problem for me. I went to the top dermatologists in my country (Harvard type guys, etc), only to be precribed with the same drugs already posted here and the same temporary effects. So I don't think the doctors are bad, just that they doesn't know. I also must say for the record that when I was like 5 or maybe 6 yo to the age of 19, I was constantly on antibios (every 4 months maybe) because I had throat recurrent infections. The standar treatment back then for that was penicilin one shot. I wonder what is your medical background besides from the folliculitis? think when you were little.
Well, after years and years of looking for a cure and been on and off drugs, I got tired, and decided to be a year at least without any oral medication what so ever. So, when I stopped my condition got worse and worse at first, and at some point in time I had like 30 zits in my scalp, bloody pillows etc. I went off the prescription shampoos also, and try a natural propolis shampoo, that managed to calm my scalp and reduced my spot to maybe 10 spots per week. I also stop drinking alcohol and stop smoking, change my diet a bit, and tryed to live a more healthy life style. I also cut my hair very short. This steps really improved my condition a lot, like 70% at least but never cured me.
With time my "natural" shampoo stopped working too, so I had to change it and I found that mild shampoos,where better tan shampoos for greasy hair regardless if they claim to be natural or mild. Prior to that I thought that shampoos for greasy hair were better, but I found out that the stronger the shampoo the stronger the breakout in the long run. I mean strong shampoos worked very well in the begining, but in a few weeks time, when they stop working, the breakouts were worst, so I'd decided to change to mild shampoos instead and rotate between them. I used Eucerin PH5 shampoo and others of the same kind (cetaphil etc). I also tryed with some neutral soap bars or no-soap bars, with the same results...10 spots a week maybe a little more but not so much more.
One time in the summer I went camping with my friends, and to me going camping was always terrible because I had to deal with folliculitis in places where there were no showers near or just a river or a lake were you had to take a bottle, fille it with wáter and shower like that (that's camping in the wild!). Well, that particular time we went to a national park where there was no wáter either, so the first few days I wasn't able to shower at all because we only had wáter to drink and cook, not to wash our hair. Ok, so the first few days were terrible, I had a big breakout but no so terrible as when I was on meds or prescription shampoos....maybe like 7 spots in 3 days.
This is the nice part,...... in the day number 5 of not washing my hair the spots started to dry out, and my scalp started tofell better. In day number 8 I washed my hair, but only with cold wáter from a river we found in our journey. In day 9 I was ready to wash my hair with my shampoo again but I wasn't able to do it because my shampoo got lost and wasn't willing to try some of my friends shampoo, so I thought that was it, it was doomed. In day 10 my scalp continued to clear to almost normal. After that I returned to my home, and continued to wash my hair only with wáter in the shower. The first few days I started to took 2 showers a day only with wáter only because I thought it was shampoos that were giving me this condition a so I thought I could fight it just with wáter...a lot of water. In 4 weeks I had no new mayor breakouts...just like 4 to 6 spots a week or so. Then my scalp started to itch a lot and that's when I thought that something was wrong with my skin flora, beacuse how it was posible that during the camping when I wasn't showering, I didn't had any mayor breakouts a no itch either?
Thinking this I stopped showering 2 times a day and started to wash only one time a day with only cold wáter and spending less time in the shower. This change my entire skin dramatically, from 3 to 5 spots a week it has been reduced to 1 or 2 spots a week that dry out from one day to the other. It's been like that since the end of february and I'm very happy. I really feel normal, ad must say that my hair is much less oily. I keep it vey short though.
After years and years of antibios and accutane, the only thing I had to is nothing, that's hilarious to me and a big puzzle to my MD dad I assured you. My next step is to go off wáter in my scalp every other day because I strongly belive that tap wáter with chlorine and all the thing the put it to is bad for the damaged skin. I will do that next summer because now with work and all I have to shower everyday and don't want to mess with what I have acomplished....this has been the best time of my life.
Looking in retropective I think antibiotics and/or prescription shampoos really damaged my skin for good, so I'm trying to rebuild my skin flora and trying to eat right because years of antibiotics almost for sure damaged my digestive system for good as well. Talking to my dad he said it is very difficult to rebuild your "original" flora because it is now been studied that we are born with some of it. Prior it was belived that microorganisms colonized us after we were born, but now it is known not to be the case.
I truly hope this will help you. I must say the first 3 weeks of not putting shampoo or taking drugs will be very difficult, so you could do it gradualy if you're willing to try this I should also say that I've found that stress plays a big role in this condition because when you worry so much about it your scalp poduce a lot of sebum, specially at night (mine surely did). The other thing I did when I first stopped the treatments was try not to touch my scalp at all. this is one of the most difficult parts I must say.
Hope you all can beat this terrible disease, and I will be posting new developments because I'm trying to make my dad and other MD's could do a research on this. This is very interesting from a medical perspective you know? I don't know why the other MD's in this fórum don't take time to read all of your posts....maybe they are afraid to put their reputation on the line by not having anything valuable to say. Good MD's do researc when they encounter problems they can't solve....my dad at least do that, but he is from another specialty.
I too suffer from this terrible disease and have it since I was 12yo, and now I'm 32. I have tryed every antibiotic already named here (doxy, minocycling, ciprofloxaxin, flucloxaciclin etc). Apart from those I've been on accutane 3 times (20 to 10mg), and I can say that it was the only drug that has really worked the longest too. The thing is that when I stopped taking it, it always returns like 3 to 5 months after. I've also tryed dapsone, itraconazole and fluconazole. I must say my dad is one of the top MD's in my country, so the drugs or derm appointments were never a problem for me. I went to the top dermatologists in my country (Harvard type guys, etc), only to be precribed with the same drugs already posted here and the same temporary effects. So I don't think the doctors are bad, just that they doesn't know. I also must say for the record that when I was like 5 or maybe 6 yo to the age of 19, I was constantly on antibios (every 4 months maybe) because I had throat recurrent infections. The standar treatment back then for that was penicilin one shot. I wonder what is your medical background besides from the folliculitis? think when you were little.
Well, after years and years of looking for a cure and been on and off drugs, I got tired, and decided to be a year at least without any oral medication what so ever. So, when I stopped my condition got worse and worse at first, and at some point in time I had like 30 zits in my scalp, bloody pillows etc. I went off the prescription shampoos also, and try a natural propolis shampoo, that managed to calm my scalp and reduced my spot to maybe 10 spots per week. I also stop drinking alcohol and stop smoking, change my diet a bit, and tryed to live a more healthy life style. I also cut my hair very short. This steps really improved my condition a lot, like 70% at least but never cured me.
With time my "natural" shampoo stopped working too, so I had to change it and I found that mild shampoos,where better tan shampoos for greasy hair regardless if they claim to be natural or mild. Prior to that I thought that shampoos for greasy hair were better, but I found out that the stronger the shampoo the stronger the breakout in the long run. I mean strong shampoos worked very well in the begining, but in a few weeks time, when they stop working, the breakouts were worst, so I'd decided to change to mild shampoos instead and rotate between them. I used Eucerin PH5 shampoo and others of the same kind (cetaphil etc). I also tryed with some neutral soap bars or no-soap bars, with the same results...10 spots a week maybe a little more but not so much more.
One time in the summer I went camping with my friends, and to me going camping was always terrible because I had to deal with folliculitis in places where there were no showers near or just a river or a lake were you had to take a bottle, fille it with wáter and shower like that (that's camping in the wild!). Well, that particular time we went to a national park where there was no wáter either, so the first few days I wasn't able to shower at all because we only had wáter to drink and cook, not to wash our hair. Ok, so the first few days were terrible, I had a big breakout but no so terrible as when I was on meds or prescription shampoos....maybe like 7 spots in 3 days.
This is the nice part,...... in the day number 5 of not washing my hair the spots started to dry out, and my scalp started tofell better. In day number 8 I washed my hair, but only with cold wáter from a river we found in our journey. In day 9 I was ready to wash my hair with my shampoo again but I wasn't able to do it because my shampoo got lost and wasn't willing to try some of my friends shampoo, so I thought that was it, it was doomed. In day 10 my scalp continued to clear to almost normal. After that I returned to my home, and continued to wash my hair only with wáter in the shower. The first few days I started to took 2 showers a day only with wáter only because I thought it was shampoos that were giving me this condition a so I thought I could fight it just with wáter...a lot of water. In 4 weeks I had no new mayor breakouts...just like 4 to 6 spots a week or so. Then my scalp started to itch a lot and that's when I thought that something was wrong with my skin flora, beacuse how it was posible that during the camping when I wasn't showering, I didn't had any mayor breakouts a no itch either?
Thinking this I stopped showering 2 times a day and started to wash only one time a day with only cold wáter and spending less time in the shower. This change my entire skin dramatically, from 3 to 5 spots a week it has been reduced to 1 or 2 spots a week that dry out from one day to the other. It's been like that since the end of february and I'm very happy. I really feel normal, ad must say that my hair is much less oily. I keep it vey short though.
After years and years of antibios and accutane, the only thing I had to is nothing, that's hilarious to me and a big puzzle to my MD dad I assured you. My next step is to go off wáter in my scalp every other day because I strongly belive that tap wáter with chlorine and all the thing the put it to is bad for the damaged skin. I will do that next summer because now with work and all I have to shower everyday and don't want to mess with what I have acomplished....this has been the best time of my life.
Looking in retropective I think antibiotics and/or prescription shampoos really damaged my skin for good, so I'm trying to rebuild my skin flora and trying to eat right because years of antibiotics almost for sure damaged my digestive system for good as well. Talking to my dad he said it is very difficult to rebuild your "original" flora because it is now been studied that we are born with some of it. Prior it was belived that microorganisms colonized us after we were born, but now it is known not to be the case.
I truly hope this will help you. I must say the first 3 weeks of not putting shampoo or taking drugs will be very difficult, so you could do it gradualy if you're willing to try this I should also say that I've found that stress plays a big role in this condition because when you worry so much about it your scalp poduce a lot of sebum, specially at night (mine surely did). The other thing I did when I first stopped the treatments was try not to touch my scalp at all. this is one of the most difficult parts I must say.
Hope you all can beat this terrible disease, and I will be posting new developments because I'm trying to make my dad and other MD's could do a research on this. This is very interesting from a medical perspective you know? I don't know why the other MD's in this fórum don't take time to read all of your posts....maybe they are afraid to put their reputation on the line by not having anything valuable to say. Good MD's do researc when they encounter problems they can't solve....my dad at least do that, but he is from another specialty.
3 Comments
Very interesting Andrew. I have a similar story to yours. I think I'll try this. Thanks for sharing
Update. This works. Hope this helps someone else.
I have read here and there of people doing this and having great results. I recently just had a similar epiphany while out on a camping excursion. I was initially worried because of the no shower access but to my surprise after a few days out in the sun, sweating, no shower etc, my scalp did not get worse. In fact, it itched less and felt better. Could it be? All of the things we are putting in and on our body to fix this terrible condition are in fact making it worse by disturbing the bodies natural cures. I have shampooed once this week but I think I am going to go to strictly water. My hair feels a little oily but my scalp feels great! If after 10 years all I have to do is not do anything it would be a miracle...
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