Severe Scalp Folliculitis (Seen 4 Dermatologist already)

[MattyK]

I have had this painful problem for years (4 years to be exact). I am 25 years old, male, from India. Here's how the problem started. Tiny red bumps on back of the scalp back in 2003, they got very itchy. I would scratch them, and they'd be filled with sort of clear liquid. After a few months, I went to a dermatologist, she prescribed me with something (i can't remember). It didn't do anything, and I had to go back. Problem was, her appointments were pre-booked months in advance so it took forever to get anything done.

Back then, this wasn't a painful problem, but over the years, I've seen 4 dermatologist, they all have done cultures, always negative. Last year, I was prescribed Doxycycline, and it did wonders for me. I was on 75mg/day for over six months, and not a single bump on my scalp or chin (I occasionally get them on chin). The doctor told me to gradually slow down on the doxy, and I stared taking 1 pill every 2 days. After a month, I completely got off doxy.

Things were great for about 2 weeks, until the bumps came back on my scalp. And now doxy or any other drug doesn't work. I've used Zinc shampoo, Salycilic (spelling?) Shampoo, nothing works. I'm tired of going to dermatologist, they don't even know what drugs to give me.

So far, I've taken Cepalexin, Used Luxiq foam, used Loprox shampoo (this kind numbed the pain), used Doxy, and couple of other antibiotics.

The latest thing I was told to do was to take 2 100mg doxy per day, and all it's doing is controlling the bumps a little. Like 1 week of the month, I will have 90% clear scalp. The other 3 weeks, I'll have 8-10 spots.

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.

[MDEddy29]

A related discussion, Chronic Folliculitis was started.

[bigtronix]

A related discussion, Severe folliculitis in my scalp             was started.

[richdet]

Also,  conditions like this are only becoming more common, since new strands of antibiotic resistant bacteria seem to be increasing frequently.  I'm pretty certain I'm having all of these problems due to being over-prescribed antibiotics for so long.  I wish I could pull my prescription records and sue my dermatologist for keeping me on antibiotics for so long without discussing the risks.  Wake up doctors and start focusing on cases like these.  More and more people are suffering with conditions like mine.  My new derm has even said she has been seeing more cases of chronic gram-negative folliculitis.  It doesn't have to be chronic - it's only chronic right now because our medicine is so simple.  Figure out what's going on.

[richdet]

Hope you're doing well.  I can completely sympathize with your problems.  I've had bacterial throat problems my whole life.  Always on antibiotics.  And for the past few years, I've had chronic gram-negative folliculitis.  First time it was e.coli and now it came back enterobacter aerogenes.  I'm on macrobid and bactrim right now.  Nothing is happing.  My facial and scalp follicles are breaking out like crazy with liquidy pus and my tonsils are swollen and full of puss.  It's so annoying though, because it'll heal up over night, and then I'll be clear for a whole two  weeks or so.  Then it comes back with a vengeance.

It's pathetic to me that a doctor, including the one above, can just be like "it's hard to treat. sorry."  That may be the case, but things can be done.  I'm so tired of all of the doctors I've visited being baffled and then saying "sorry it's hard to treat." Take some initiative for god's sake... Ug. Sorry.

[MattyK]

4th day on minocycline. Seems to be working, the current bumps are slowly "dying". Will have to see if new ones are coming up or not. I'll update in 3-4 days when the current bumps should completely disappear.

[MattyK]

My test came back negative for autoimmune. Back to square one... no one knows what's causing this. Only thing I can think of now is like I mentioned, gram-negative folliculitis. I've been taking antibiotics ALL my life.

[MattyK]

Will have to wait till Monday for results. As for minocycline, I've taken 4 pills so far in past 48 hours, no noticeable difference. I could manage the pain of scalp bumps, but the chin bumps are highly noticeable and embarrassing.

I just read up on Gram-Negative Folliculitis, and it seem to fit my condition better than anything I've researched so far. I read up on a forum where someone said not to take doxy or minocycline if I have gram-neg, and instead to take isotretinoin.

How can the dermatologist check for gram-neg folliculitis? And why would none of my derm check for this in the past?

[MattyK]

Went to the derm today, I mentioned the minocycline and the autoimmune. I asked her if autoimmune could be an issue. She asked for my family history with autoimmune and other diseases, but there's no one in the family w/ that issue (except my grandmother who I've always seen scratching her scalp). She basically said "I have no clue why your folliculitis is so stubborn".

So she got some blood and they will check for white cell count and other things related to autoimmune. And she also prescribed me minocycline. I'm taking it twice a day. I'll update my condition in 2-3 days to see if it's doing anything. In the meantime, I should have the result of the blood check.

[missnanny]

If you weren't using new cleaning products at that time, then I suspect second hand exposure to the 2-butoxyethanol type chemical.  The pilonidal sinus may be an autoimmune response to this exposure.

So, did you attend some sports arena event?  Did you participate in a running race?  Did someone new come around at that time, either in your personal life or your work?

People strongly exposed can breath the chemical out in their respiration and the molecules of chemical can get into your eyes (a primary route of exposure).  I heard of a man who attended a sports event and immediately thereafter he became ill and had a brain tumor start up that grew to the size of a grapefruit.  

My husband cleaned the carpet in one of our rentals and stood very near me a couple of days later.  I had diarrhea and vomiting.  One week later, the same thing; except I only had diarrhea  (Remember what happened to Jett Travolta? after carpet cleaning in his home he came down with Kawasaki Disease & almost died at age 2; at age 16 years I suspect the advance anemia of this chemical exposure ... led to his seizures and ultimate death - my opinion)

Once my husband had been doing a work project where he would have had some small exposure to this chemical.  He was on one side of me and the nostril on that side of me started loosening ... and dripping.  Other nostril not affected

[MattyK]

From what I can recall, I haven't done anything different. But here's one thing to note. I've been basically living off antibiotics since I was a baby. I've always had chronic sore throat pain which required me to be on antibiotics. I would get sore throat about twice a year at the minimum until I was about 22 years old (3 years ago). Since I started taking Vitamin C supplements in form of orange juice, etc, haven't had my 'chronic' sore throat since. No clue if this has anything to do with this.

Also, another side note, I've also had pilonidal sinus which started just around when my scalp problem started. I've had the surgery for pilonidal last year.

Yet another note, I've had chicken pox when I was 19. (Yes I've lived a painful life so far).

As far as my day-to-day life, I'm very clean. I can't stand not taking a shower every day. I shampoo everyday and must take shower. Also, I've always had oily skin. I work from home, I have my own internet business so I'm at my desk 6-10 hours a day. I also don't let anything touch the back of the scalp, except for the pillow at night.

One thing to keep in mind is that I get the same thing (or similar to the scalp) on my chin. Three days ago, a 'pimple' was growing and after it was all yellow and everything, when I popped it, I noticed a beard hair inside. It wasn't curled up or anything, it was pointing straight out. The problem seems to be deep within the root of the hair, and when the scalp pimples are super sensitive and sore, they have the yellow tip just like the one on the chin.

I will do some hardcore research on everything you said to see if I can find any connection.

[missnanny]

This could be an autoimmune issue, couldn't it?

Were you doing anything differently in 2003 when this first started up, or shortly before this ... than you were before.

One autoimmune causing chemical to AVOID is 2-butoxyethanol and exposure would look like 'the flu' or just flatulence and 'the sniffles' or sinus congestion.  It is very frequently found in home cleaning products, paint, etc.  What kind of work do you do?

Look for the Chronic Fatigue Immune Dysfunction Syndrome (CFIDS,CFS, FM) if so ... and look for a host of autoimmune issues (not just one)

I have wondered whether gamma globulin would help

[MattyK]

The next time I go to a dermatologist, I will mention minocycline. Also, you said that the condition just stopped after a while... how long is 'a while'?

Because these bumps are extremely sore and painful. In the beginning, they were just itchy even if I pick at them. Now they're itchy, but very sensitive to touch and sore.

I've seen stories online about people taking fish oil pills which helped clear their skin, along with Vitamin A supplement. Any truth to this?

[Alan Rockoff, MD]

I understand your frustration, but the condition you describe is indeed very hard to treat.  Sometimes antibiotics work, but sometimes they don't.  You may benefit from another antibiotic you don't mention called minocycline.  Sometimes injections of cortisone, or cortisone applied under overnight placement of a shower cap help.  Even if treatments help, you may have to put up with only partial benefit.  Unfortunately, this is just the way things are with this condition.  On the other hand, I have seen patients like you in whom the condition just stopped coming after a while.

Best.

Dr. Rockoff