SEB PICS: Detailed history, diagnosis and condition management

History/Context:

I have suffered from EC for nearly 15 years and have been under the care of numerous doctors and dermatologists both here in the UK and back in the USA where I worked for a number of years.(7 oral pathologists in all) They have employed a range of treatments (topical steroids, steroid injections, antibacterial ointments etc) with varying results.

I have tried alternative remedies as well: leaving everything alone; cutting; soaking; Chinese medicine; many many many many many different things and although the duration of the growth cycle and its appearance have changed, nothing has ever made the condition go away.


I recently decided to try again and got in touch with my GP who referred me to oral pathologists at Barts and Kings in London.

Comprehensive details of the diagnosis and management can be found below, but in summary, the current thinking is that my lips somehow became infected with a bacteria; this bacteria has found a way to hide in the environment and continually cross-contaminate/re-infect my lips. Thus my lips never get the opportunity to heal properly.

The doctors want to stop this vicious cycle by removing the possibility of re-infection. (or to put it in their language: "to strictly adhere to a staphylococcal irradiation regimen". (No radiation treatment involved before anyone asks!)

I am three months into this approach and not only do my lips feels great (elasticity has returned) but their appearance has improved dramatically. (So much so that I have been out and about every day for the past four weeks, quite a shock to the system having lived life as a hermit for so long.)

Although the cheilitis is still mildly present, it is far more manageable at the moment and nobody would have a clue that the condition exists (visually).

My doctors expect the healing process to be fairly slow, and are hopeful of steady progress as each month passes. They will be taking regular swabs over the coming months as I have been advised that the bacteria may mutate as time goes by. The treatment may therefore have to change to accommodate this.


The following is my most recent diagnosis, treatment and management plan.

My doctors decided to start from square one because my condition today may differ from it's original state 5/10/15 years ago (although the symptoms appeared incredibly similar to me!)

Incidentally, numerous blood tests have been taken over the years, all of which came back normal.

Swabs were taken from inside my mouth, nose and ears, as well as my armpits and groin. They also scraped some of the crust from my lip and tested that as well. These swabs and scrapings revealed that I had a staphylococcal superinfection (the swab grew staphylococcus Aureus).

It was explained to me that it was possible that my mouth was continually being re-infected from somewhere (either myself or something in my everyday environment). The approach was to remove any infection from my nose/ears/groin/armpits/environment etc and to try to stop the reinfection/halt cross-contamination.

My treatment so far:

Batroban (Mupyrocin) was applied to the inside of my nose and ears twice a day for 10 days (using a cotton bud/separate bud for each orifice). After 5 days of this I also applied the Batroban to my lips as well for 10 days. During this period of time I was very careful not to touch my face/nose/ears or to allow anyone else to touch my face (to make sure that the bacteria could be eliminated). By the way, this is quite a difficult task to carry out as kissing my wife (a kind of cheek to cheek improvisation we have developed over the years) or scratching your nose/ears are such automatic things to do. Thankfully, at the end of this course of treatment, I could return to normal(ish). However, I continue to endeavour not to cross-contaminate from my nose/ears/mouth to this date. If I do feel the need to pick my nose (not that I do that!) or stick a finger in my ear I make sure I wash my hands afterwards.

I am required to wash my hands (several times a day), armpits and groin (once a day) with surgical scrub (the kind of thing surgeons use in theatre). It is sold in the UK under the trade name Hydrex or Hibiscrub. (4% Chlorhexidine Gluconate type of cleanser). Hibiscrub can be purchased from Boots or I buy Hydrex online as it is much cheaper.

My wife also uses this surgical scrub but just to wash her hands.

I was also advised that I had to follow the below hygiene measures closely, again to reduce the chance of cross-
contamination/re-infection:

--repeated regular washing of all towels and linen at 90 degrees (or highest temp possible). My towels have to be washed separately from other family members, and stored separately as well. We even asked friends/family/visitors not to touch my bathroom towel.

--All of my clothing has to be washed at 60 degrees where possible, again separately from other family members and
separately from my towels and bedding.

--Put on a new, clean pillow case every night

--Change tooth brush every 4-6 weeks, I now store this away from other family members, in the bathroom cupboard

--Dry shaving (I now use an electric razor). It was explained to me that moisture from wet shaving can encourage bacteria growth, so dry shaving was recommended.

-- Ensure that all clothing is completely dried after washing, never put away slightly damp (again to reduce risk of bacteria)

After another month, I returned to the doctor and we agreed that the infection was significantly reduced and it looked like my lips were thinking about undertaking the healing process. For example, one of the effects of the condition over the years has been that my bottom lip had started to turn out slightly over the years (or everted as they say in the medical profession). There has been a noticeable reversal in this process over the past 6 weeks.

I was told to stop the Batroban after the first 10 days (apparently strains can become extremely resistant).

All the above hygeine measures will continue in the long term. In addition I have been advised to use Corsodyl Daily (please note: not the stronger Corsodyl varieties) as a mouth wash. I was also advised to allow some of it to dribble over my lips and then lightly 'smack' them together for a few seconds each day to form a very light coating (basically because Corsodyl Daily contains an anti-bacterial agent)

I had a patch test of about 90 different chemicals/compounds. I reacted to several which are commonly found in various consumer products including shampoos, washing powders, shaving gels and other bathroom products. As a result of this I have changed my brands of washing liquid and shampoo. Obviously this would be different for everyone, and obviously there is no evidence that these reactions have any impact on my EC.

Before the treatment regime, I was regularly soaking the crust away from my lip (every 3 to 4 days) each time it formed but my doctors advised me not to do this (again due to bacteria liking moist environments and it's amazing capacity to find its way into the tiniest nooks and crannies on the lip's surface/epithelium).

If I feel the need to cut the crust away in future, I have been strongly advised to roll-boil surgical scissors for a minimum of 5 minutes in a clean pan. Fortunately I have not had to do this for 6 weeks now for the first time in a decade.

Both lips feel like there is some serious healing happening i.e. they have turned a healthy pink colour, the skin cells are knitting the way lip cells should do and my they aren't forming the white line I used to get when they become moist/wet before hardening and transforming into EC.

After so many disappointments over the years, I am reluctant to use the C word (cured, before you ask) but it certainly feels like a type of remission at this stage.

Who can say what the next few months hold in store but all I can say is that this mind-bogglingly tedious and frustrating irradiation regime over the last 16 weeks seems to be doing the trick for me.

And as you can see from the photos of my lips (seb pics) posted at the Image Gallery 3 years ago, this is quite an
achievement.

I will post up-to-date pics over the coming week/as soon as I can get hold of a digicam.

Anyway, food for thought should anyone consider this kind of approach but as always I would strongly advise anyone
undertaking this form of management, that they consult their doctor to see if it is appropriate.

Happy to clarify any of the above if you need me to and best of luck to all fellow sufferers.

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