Chronic Scalp Folliculitis

[dancer4j]

Hello,

I am a 25 year old female that has been battling with scalp folliculitis for the past 2.5 years. I have been on Bactrim DS for several years now for acne, I would say since 2005, but I developed scalp folliculitis in approximately Feb. 2008.  I have tried every shampoo imaginable, prescription & non prescription (tar-based, salicylic acid, sulfur, sodium sulfacetamide, zinc, ketoconazole, salicyclic acid AND sulfur combined, hypoallergenic, selenium sulfide).  I currently go to a dermatologist every 3 months for follow-ups (mostly for acne, but my scalp as well), but have received at least 3 other opinions.  First doctor switched me to minocycline & Re-10 Wash (containing sodium sulfacetamide) which did no good.  Second doctor took a biopsy of one of my lesions revealing folliculitis.  He placed me back on Bactrim and Clindagel for topical use.  He instructed me to use regular Head and Shoulders as well as Pantene Pro V. The Clindagel does help clear up all the active lesions, but it does not help prevent any new lesions.  Of course, I don't use the Clindagel on ALL of my scalp, so I understand there is no way to prevent new lesions with just this medication.  Third doctor, whom which I saw earlier this month, suspects I have scalp acne & has switched me to doxycycline.  So far, no results.  I still use the Clindagel on all my lesions, but I am so frustrated with this disease.  I also recently used a steroid shampoo called Clobex 2x a week for 2 weeks - no results.  I have had my nose cultured-normal, and 2 lesions cultured as well.  First culture came back as normal scalp, second one was done recently so I do not have results yet.  Everyday I seem to have 1 or more new lesions on my scalp.  They are itchy,painful, and range from small to moderately large.  I am at my wit's end with this condition.  My routine dermatologist has recommended possibly ketoconazole for 5 days only to help flush out any fungus, yeast that may be causing this.  I am willing to try anything at this point.  Any thoughts?

[journeytoclarity]

Hi,

I previously had mild cystic acne. Went through accutane and during my course I developed "folliculitis", which worsened throughout the treatment. The nurses thought it was part of the initial break out, until all of my acne healed and I was left w/ only the "folliculitis"...which spread and worsened as time passed. It's located on  the back of my scalp as well as on my upper arms, stomach, and on one side of my upper back. The bumps are deep, painful sores that repeatedly swell, crust over, do not go away, and spread. They are not like acne in that they are painful, they have red (not white) centers, and the fluid inside them is not thick - it's blood or a combination of blood and clear fluid.

I had a culture and a scoop biopsy done, however neither showed any fungal or bacterial growth. The scoop biopsy led to a diagnosis of ulticaria (hives - allergicic reaction).  After browsing hundreds of  photos of ulticarial reactions I was unable to find even one photo that even somewhat resembles my condition. I have, however, found countless photos and descriptions of folliculitis that mirror my condition. I'm wondering if it's possible to have folliculitis without bacterial or fungal presence?

This has been going on for nearly five months and I'm worried due to the worsening severity of it.

Regardless of my uncertainty re: my diagnosis, I've stopped seeking dermatological  treatment due to being prescribed countless antibiotic and steroid treatments.  After doing endless research, I've come to believe that having been on antibiotics for over 10 yrs straight has led to dysbiosis - an unhealthy imbalance of the good and bad bacteria within my intestines, which leads to gut permeability (aka "leaky gut"), which is the cause of nearly all inflammatory, allergic, and autoimmune issues. Research it!  Hippocrates was ahead of his time and is still ahead  of THIS time.  A very small sector of modern medicine is beginning to use probiotics to treat infections by balancing microbiota flora  (instead of using antibiotics to kill the good with the bad for some temporary relief), and I think this healthier and long-term approach will trend up with time.

I'm attempting to fix my issues from the inside out, instead of continually and unsuccessfully treating the symptoms with prescribed suppressive therapy.  Although the process is lengthy and requires significant ongoing lifestyle changes, I'm hopeful that rebalancing the flora within my microbiome will effectively treat my skin issues while simultaneously improving other things for me.   I got a new water purifier/alkalizer, just bought a shower filter and I'm using Nizoral shampoo, which is sulfate-free. I don't eat dairy, and a little over a week ago I cut out gluten and sugar (aside from fruit).  I realize that only removing those triggers will not improve the permeability issue.  I'm beginning to take supplements to help heal and seal the tight junctions within my guts while restoring the healthy bacteria that keeps the bad bacterial/fungal invaders within my guts in check.  These supplements include pure organic powder forms of: L-glutamine, MSM, and collagen, plus liquid ingestible probiotics.  I'm taking these things on an empty stomach.  I'm also fighting from the outside by using sprayable probiotics that I mist on to the affected areas of my skin. Anti-bacterial/anti-microbial products cannot be used while doing this, because doing so would counterproductively kill the probiotics.

So far, after about a week, I've seen noticeable improvements in all areas that are affected.  This is somewhat relieving, as compared to how I was feeling about the uncontrollable spreading.  Unfortunately, I'm unsure about what exactly is helping since I made various simultaneous changes.

Additionally, I have a hypoactive thyroid and want to avoid prescribed medication to fix that issue.  I want to start supplementing for that as well in hopes of naturally regulating my hormonal imbalances, which likely contribute to my inflammatory skin condition.  In combination,  I definitely need to decrease my very high stress levels, and that job is ALL on me...although the relationship is cyclical in that this condition exacerbates my stress while lowering my self-confidence, which in turn increases both stress and inflammation.  I'd really like to have a food sensitivity test done, but I'm a Kaiser patient and I can only see an allergist for life-threatening allergic reactions...it would be beneficial to know exactly which foods to avoid in order to help decrease these inflammatory symptoms.  I'm also considering visiting a naturopathic MD/Nutritionist down the line to assist me on this frustrating journey, if need be.  I may exit the Kaiser network in the next few months as well...time will tell.

PLEASE share with me any relevant information out may have!

Thank you

[Jenx1128]

I had this problem!! ONLY thing that finally got rid of it was distilled white vinegar! Not sure how it's supposed to be done, but I mixed in a spray bottle with water and sprayed my scalp, leaving it on 20 min, then wiping with a wet cloth. A guy online soaks a rag in it and leaves it on his head 20 min, but he's bald, so... Anyway, hope it works!

[DettolLover]

Wow!! It is nice to know that I am not alone in this battle against this weird thing I also have had since the last 8-10 years. Symptoms - little itchy boils on my head, that would build up with pus, and then burst. And any place the pus would touch, in the head, I would start getting more boils.

My approach has been
1) whenever the boils develop, use cotton soaked in dettol to burst them and clean up the pus and blood.
2) wash hair morning and night with J&J baby oil; finish the hair wash with a mug of water with 4-5 drops of dettol
3) blow dry my hair after the wash
4) Come snow or rain, I gotta do the above every single day
5) every time I go for a hair cut, immediately shampoo and wash with dettol.

Some things which aggravate or has been likely to cause the situation
1. too much food rich in cholesterol, very high probability I will get it. Eggs, prawns etc
2. frequent heavy drinking - read like every day for a few days together
3. Hot, humid weather - especially if head gets sweaty
4. Some type of pickles - especially those that could have fennel, mustard, chillies, etc.

Every 6-7 months, I am prone to thinking that I got rid of the problem - you can't blame me cos it will completely disappear - and miss the routine, and bang the buggers will be back. I missed it this time, and have a really bad case. So went and saw a doc this time, and started searching online and landed to this page. So now I realise that this could be a life long condition :(

So no option to continue the battle till my grave I guess.
You might want to try my approach too.

[Mynameskev]

Hello, just wanted to share what has worked for me in hopes it might help some of you guys as well, it's a terrible affliction and no one deserves to suffer with it... My folliculitis started about 2+ years ago, it started as small bumps and eventually spread to large cystic sores all over the back of my head, crown of my head, hairline and was moving onto the sides. They would burst and ooze puss, it was so painful I couldn't even lay my head on my pillow at night. I tried the dermatologist and various anti fungal shampoos and the standard rounds of antibiotics which, like everyone else, helped until I stopped taking them at which point it would come back with a vengenance. Similar to all of you I turned to the internet and found that I was not alone. Through pure luck one day on a forum site (so far buried in the depths of google search that I could probably never find it again) I found a recommendation from someone who completely saved me. He was doing the same thing I am doing now just spreading the word about something that worked for him. He said to use OXIDERM + PS it is a veterinary shampoo manufactured by the Ceva Corporation (I get mine on amazon). The results came fast, within a couple days I could feel all the bumps and sores completely drying up and flaking off! It was one of the best moments of my life for sure! I get the occasional bump every once in a while but for the most part I don't even consider myself having folliculitis anyomore I never even think about it! I used it everyday for 6+ months and I still use it every other day now. I looked up all the ingredients and they are all normal ingredients in shampoos plus a whole bunch of strong acne medications so as far as I can tell it is completely safe to use. The only thing is that after quite a while of use it will start to turn your skin a bit pink, not like hot pink or anything lol but just pink skin tone, which I have anyways cus I'm Irish so it's a easy trade off! Anyways I hope this helps someone looking for relief because I know firsthand how painful, embarrassing, and life consuming this disease can be!

[olefokes]

Hi OppPenelope.  I have a strong hunch that many of us are battling demodex mites on scalp (could involve face, neck, upper body as well).  I could write several pages on what has led me to this thinking. We live in Nashville but have had limited success finding a knowledgeable dermatologist.  The music/showbiz industry here promotes fairly extreme cosmetic dermatology.  It's easy to find ophthalmologists and dermatologist to do IPL (intense pulsed light) which kills demodex.  Our insurance doesn't cover cosmetic IPL.  In my husband's case, because his "infestation" has gone for so long unattended (we married 5 years ago), he has open lesions and carcinomas.  So for him insurance will cover some of a procedure called PDT (a form of light treatment).  However, I'm 7 years younger, not diabetic or overweight and try not to eat sugar.  My scalp is to yet ulcerate but weird hard lumps are beginning to form (and I can actually feel the demodex bump into hair follicles--which makes me feel like I'm losing my mind). We are currently using permethrin 5% every night.  Last night I used clove leaf extract essential oil with grapeseed oil to dilute (though I did not know what ratio to mix).  I read in a medical research article that clove leaf oil kills demodex.  I really don't know how successful we will be.  HOWEVER, I feel certain that getting rid of any existing fungal infection is critical.  I believe the next step is treating the bacteria that live on the mites.  I've read that oral metronidazole works.  Unfortunately, that requires a prescription.  But maybe with a diagnosis of folliculitis, a doctor would prescribe some antifungal medication.  I'm betting the longer a person has been battling this, an oral medication may be the only thing to work against the fungus that feeds the mite and the bacteria that keeps the mite healthy.  I hope someone out there with sincere motives (not selling a product) can shed light for us all.  In the meantime, fight the good fight. Stay strong.  Best wishes.

[OppPenelope]

Hello! Well, same as dancer4j. I too have seen several doctors, biopsy with same outcome, several wigs, and I watch my blood sugar levels carefully. I've poured anything from bleach to facial peel acid. This is the first time in a long time I've researched my scalp condition on the internet in a long time. I scare the crap out of me with diagnosis like pemphigus vulgaris, schlerderma, and that list is a mile long. The reason today....stuff coming off my scalp and researching the products which caused some fantastic results. Undecylenic acid (fungicare) and salicylic acid 20%. I still don't know anything yet but I dint care if I melt what little hair is left, I love my wigs! I just want the itch, burn, and sores to stop. Wishing all suffering good luck during this battle! Hope to update with phenomenal results soon.

[olefokes]

Hi OppPenelope.  I have a strong hunch that many of us are battling demodex mites on scalp (could involve face, neck, upper body as well).  I could write several pages on what has led me to this thinking. We live in Nashville but have had limited success finding a knowledgeable dermatologist.  The music/showbiz industry here promotes fairly extreme cosmetic dermatology.  It's easy to find ophthalmologists and dermatologist to do IPL (intense pulsed light) which kills demodex.  Our insurance doesn't cover cosmetic IPL.  In my husband's case, because his "infestation" has gone for so long unattended (we married 5 years ago), he has open lesions and carcinomas.  So for him insurance will cover some of a procedure called PDT (a form of light treatment).  However, I'm 7 years younger, not diabetic or overweight and try not to eat sugar.  My scalp is to yet ulcerate but weird hard lumps are beginning to form (and I can actually feel the demodex bump into hair follicles--which makes me feel like I'm losing my mind). We are currently using permethrin 5% every night.  Last night I used clove leaf extract essential oil with grapeseed oil to dilute (though I did not know what ratio to mix).  I read in a medical research article that clove leaf oil kills demodex.  I really don't know how successful we will be.  HOWEVER, I feel certain that getting rid of any existing fungal infection is critical.  I believe the next step is treating the bacteria that live on the mites.  I've read that oral metronidazole works.  Unfortunately, that requires a prescription.  But maybe with a diagnosis of folliculitis, a doctor would prescribe some antifungal medication.  I'm betting the longer a person has been battling this, an oral medication may be the only thing to work against the fungus that feeds the mite and the bacteria that keeps the mite healthy.  I hope someone out there with sincere motives (not selling a product) can shed light for us all.  In the meantime, fight the good fight. Stay strong.  Best wishes.