Saturday, September 20, 2014

Lip status and treatment routine as of 2014

Hi guys. I think it’s about time I wrote an update on my lip status and treatment routine.

Lip status

My lips have been good the last couple of years. They still peel each and every other day but usually only thin flakes. 

1-2 times a year the EC flares up (more inflammation, the peeling area becomes bigger and the flakes thicker). This happens for no apparent reason (it does not seem to matter whether I am stressed or not, eating healthy or not, sleeping enough etc). It usually settles after about 2 weeks.

95% of the time my lips looks normal and no one else than me notice the peeling.

Update: I was asked to upload a photo so here is one from today. This is what my lips looks like most of the time. Notice the small area on the left side of the lower lip: it shows some signs of peeled skin and is slightly more red. It usually heals up pretty in a day or two.




Treatment Routine

I still have to use a lip balm ointment 2-3 times/day or else the skin of the bottom lip becomes very dry and start to crust. 

I still use the same beeswax ointment that I have been using for about ten years now. It is a swedish brand and is called "Munkens Bisalva". Read more about it in this post from 2009). I don't store it in the fridge anymore though.

How I apply it:

1. I take a cotton swab, dab it in the ointment and put some on my lips 
2. I gently rub my lips together
3. Finally I take a paper tissue and dab it around my mouth a little to make the lips less ”glossy” looking

If the skin is loose somewhere it usually peels when I bring the cotton swab to that area or when I rub my lips against each other.

I try not get the lips wet (when I shower or swim) as this usually makes the skin peel more easily and makes the loose flakes turn white. 


Medication and/or Supplements

None.


Diet

Generally I follow a diet that is a mix of the mediterranean diet, slow carb diet and the paleo diet: 

Lots of: 
  • Fish, eggs, chicken and lean meat
  • Greens (all kinds)
  • Berries 
  • Fruit
  • Squash
  • Root vegetables (sweet potatoes, potatoes etc)
  • Nuts and seeds
  • Olive oil
  • Water 

A little less of (than before):
  • Milk, yogurt and cheese
  • Wholemeal pasta and bread
  • Brown rice, bulgur and quinoa
  • Lentils and beans

Occasionally:
  • Chocolate
  • Ice cream

Very little:
  • Candy 
  • Alcohol (occasionally I like to kick my heels up sometimes but it rarely happens more than 4-5 times a year)

No: 
  • Soft drinks
  • Cigarettes
  • Drugs


Lifestyle

  • Exercise: 30-60 minutes 3-5 times a week
  • Sleep: 7-8 hours per night
  • Mindfulness practice: 10 - 40 minutes per day (body scan, focused breathing etc)
  • Sun: I try to go outside for at least 15 minutes per day no matter the weather
  • A social life: Talking to/meeting family and friends on a daily basis
  • Engaging in stuff that is meaningful (to me) or interesting or just plain fun

I don't follow the above diet or lifestyle 100 % of the time. Just like the rest of you, I am only human :) 

If you have any questions you can post them in the comments field and I will try to answer them as soon as I can.

12 comments:

  1. Suave Skin Solutions - Revitalizing with vitamin E. (<- This one is WAY better for me, I've only tried this brand, but please experiment and see if any other works better so you can share with us.)
    OR
    Perrigo - Nystatin Ointment USP. (<-Don't know if the brand matters.)

    Hello, everyone, a few years ago I posted on a couple of C.E. forums/sites a way to 'manage' C.E. by using Nystatin Ointment. Nystatin makes it so that the lips peel at a slower rate, so instead of your lips peeling once a day everyday, they begin to peel by the third day (<- for me).

    Well a few weeks ago, I accidentally came across a much better way to control C.E. which is applying "Suave Skin Solutions - Revitalizing with vitamin e" directly to your lips every day. I haven't experimented much with it (such as how l many times a day it should be put on, and how many days it lasts without missing a day of treatment), but from what I've gathered, if you put this lotion on once a day when you wake up, you can subdue a C.E. outbreak for weeks, if not months, maybe even years. I use it 5 days a week straight with no peeling, but I get lazy on the weekend, so they begin peeling again. I would advise that you don't get lazy.

    I suggest everyone experiment and see what works better for you & share it on any C.E. site/forum, please.

    ReplyDelete
  2. Hi,
    Just wanted to tell you you're not alone (you probably know that by now..)
    I've had that condition since I was 3 years old (much younger than other people apparently) and I think it started after I accidentally spread a strong spice on my lower lip ("oooh it's like lipstick... Ow OW OW!").
    The main difference with you is that I've had it for so long I never really cared. As I also have bad acne, if people have a problem with my appearance they can just stay away, I don't mind :)
    I really just discovered the lip thing had a medical name (and no treatment) so it feels a bit weird.

    ReplyDelete
  3. Thank you for writing me. Yes, by now I know that I'm/we're not alone (the Facebook group had 245 members when I last checked), but it is always nice to hear from new people confirming it. That is how we create a community: one person at a time. It took a couple of years for me to find the medical term for this condition, and yes it does feel a bit weird. But for me it was a big relief as well as it was no longer just a weird random thing anymore. Now it was a weird random thing with a name :)

    ReplyDelete
    Replies
    1. David, please check my post here: http://www.curezone.org/forums/am.asp?i=2278625

      Judging by your pictures, you seem to be missing a layer of skin only on certain parts of your lip. Even at your worst, you only have crusts form in three or so places. Please read my post, and do what I suggested and record your results. I think we have this shit beat, and believe me, this is no disease. It's a simple scrape, a simple, simple wound that has wreaked havoc on many lives--needlessly. I am proof of this.

      Delete
    2. hi l'm Korean I have some question...

      I saw sometimes improvement but not fully cured.....

      about 2016 april , 2016 augest , 2016 December

      but I don't know why..... so I want to contact....

      I will check reply and my mail

      (mail : ghgh415263@naver.com)
      Reply

      Delete
  4. I hope this helps some patients out there, as I know this is a very frustrating and debilitating condition. At the end, I give a real life example of a treatment that achieved cure for one patient:

    Exfoliative cheilitis looks like it describes symptoms and may have more than one cause. There is very little scientific research on it, so many health care providers do not know too much about it. Most patients are divided into 3 categories:

    Eczematic or dermatitis: some level of control seems to be obtained with an anti-inflammatory agent such as a corticosteroid (e.g. in the cortisone family) or a calcineurin inhibitor such as tacrolimus ointment or pimecrolimus cream.

    Fungus: if the root cause is fungus (e.g. candida), people seem to have success with a topical antifungal such as Nystatin or Clotrimazole cream. An anti-inflammatory cream combined with an anti-fungal tends to help (e.g. a corticosteroid cream in the cortisone family). When combining, it would be a good idea not to apply at the same time so as to not dilute the creams (unless you get a combination cream i.e. a two in one).

    Bacterial: if the root cause is bacterial (e.g. staph aureus), then fusidic acid cream or mupirocin cream seem to work the best. Add on an anti-inflammatory like a corticosteroid cream or a calcineurin inhibitor for better results.

    Comments:
    -- It's possible a person may have more than one cause (e.g. both fungal and bacterial origins). The infection could be on the lips AND another area (e.g. inside the mouth) or even come from inside the nose.
    -- Aggressively picking at the lips and peeling them off makes the condition temporarily more aesthetic but probably causes more damage in the long run and prevents healing.
    -- Some people complain of the skin of the lips turning white when in contact with water. This is probably due to the thick buildup of keratin layer that is characteristic of this condition. This keratin layer soaks up water and expands into a white spongy mass. It appears that the "lip skin" is unable to grow back properly due to a combination of infection/inflammation.
    --Thick ointments seem to cause more damage when applied to the lips since they promote sloughing off of the lip skin, which inhibits healing. Looser oinments (with consistency of gels) or creams seem to work better.
    -- pimecrolimus cream seems to work better than tacrolimus ointment

    Patient case:

    First attempt to treat patient: prescription nystatin suspension; swish and spit for 1 minute, four times a day for 10 days. This did not achieve cure.

    Second attempt on the same patient:

    Mupirocin 2% applied topically to the lips three times a day ALONG WITH
    Magic Mouthwash (a combination suspension of nystatin (an antifungal)/dexamethasone (an anti-inflammatory)/tetracycline (an antibiotic)/water) swish for 1 minute in the mouth and spit out four times a day.

    After 2 weeks, clinical cure was achieved for this patient and they have been in remission for 4 months now with no complaints of further episodes.

    ----------------------
    If you suffer from this condition, please consult your physician. They may decide to order cultures to test for fungus/bacteria and to treat your condition accordingly.

    I hope this information may be of use to patients and health care providers out there.

    ReplyDelete
  5. Wow, and I thought I was high maintenance. This is a great round up, you have made me add another few products to my (ever lengthening) wish list :)

    ReplyDelete
  6. Nystatin worked wonders for this disgusting problem.

    ReplyDelete
  7. I always trying to find that kind of blog as you have which is well maintain and everthing is on proper place, keep doing well and you have dong good work on this post....dialysis drugs

    ReplyDelete
  8. To the one who suggested that clinical cure was achieved using mupirocin and magic mouthwash. Plese reply.
    Is the patient still cured ? Can you please inform me about the patients current condition and how the patient got ec in the first place. Please reply here or mail me.
    My email : miui1@rediff.com
    I hope you see this message and reply.

    ReplyDelete
  9. hi l'm Korean I have some question...

    I saw sometimes improvement but not fully cured.....

    about 2016 april , 2016 augest , 2016 December

    but I don't know why..... so I want to contact....

    I will check reply and my mail

    (mail : ghgh415263@naver.com)

    ReplyDelete
  10. hi are you there to answer questions

    ReplyDelete