Exfoliative Cheilitis Blog

Facebook group is up to 68 members (plus some short news)

2011-08-23T15:31:00.018+02:00

Just wanted to make a super short update (just to show I am not dead n' gone... wow it has been almost a full year since my last post).

The facebook group has 68 members at the moment and the wall seem to be alive and kicking with activity.

EC-status: Nothing new really to report. I have made a bunch of new tests (blood, vitamin, allergies), but nothing has shown anything significant or out of the ordinary (my plan is to post some more detailed data on this later).

Lips have been behaving pretty much the same as in the last year (pretty stable, not so much swelling, regular peeling, mostly thin flakes, flaring up occasionally every other month or so for 3-4 days before it becomes more stable again.)

I still use a beeswax lip balm. Other than that I focus on eating healthy, regular exercise, doing stuff that makes me happy, stress management, and getting good quality sleep.

Stay strong people.

Currently on hiatus

2010-08-31T20:54:00.006+02:00

Hi friends

As you might have guessed, this blog is currently on hiatus; I have a new job that is taking most of my time and energy. This means fewer updates (not that I do that very often ;), and it will take longer for me to respond to the mails, comments and Facebook request. But I am still here, and I appreciate every single word you send me.

Peace of mind to you all.

PS. My lip status is pretty much the same as in the last post; the skin on my lower lips peels in thin flakes.

Calendula Ointment 9% Trial - Postmortem

2010-05-15T22:15:00.015+02:00

I have been out of the blog loop for a while, sorry for the delay everyone. I've been trying the Maria Trebens calendula ointment 9% for about two months now. This is my conclusion.

Did it help?

I have not noticed any improvement, my condition is pretty much the same as before. Please note that this is the result I got with this particular brand. Maybe the results would have been different if I tried the exact formula, with the brazilian calendula (as you can read in the mail below brazilian calendula may have different properties than the european one).

Side Effects?

I have not experienced any side effects.

What's next?

I've been in contact with another doctor and I'm going to do a new battery of tests next week, both blood samples and allergy tests.

A side note - the reseacher speaks

As I wrote in my last post I have been in contact with one of the authors – Janete Almeida – of the article Topical Calendula officinalis L. successfully treated exfoliative cheilitis: a case report. I got some new mails about a month ago; she could now provide me with the specific formula used in their study. I also asked here about the images in their study being identical and that they looked digitally manipulated (if you open the two pictures in two different tabs in your internet browser and then flip quickly between them you will see that it is the exact same picture). She responded she knew nothing about it.

Here are the two mails:

Date: 2010/4/9

Subject: Calendula

Dear David

I am sorry for our delay...
I hope you understand the formula. If there is any doubt please let us know. We have more cases treated with Calendula that showed good results.

All the best,
Janete

Calendula officinalis (TM)10% in ointment q.s.p 100%

Vegepharma 10g
EDTA 0,1g
Lanetten 20g
Cosmoguard 0,1g
Benzalcon chloride 0,1g
Glycerin 12mL
Palmitato de cetila 3g
Karitê butter 5g

Distilled water 100mL

I have also seen the site from Weleda.

http://www.weleda.co.nz/Product_Display_29.aspx?CategoryId=8&pageId=0&ProductId=3665

Date: 2010/4/12

Subject: RE: Calendula

Dear David

I did not have time to read everything. I think it its important to consider emotional distress. As you have seen in the paper, our purpose was to describe a case of recalcitrant exfoliative cheilitis that responded to treatment with a standardized topical preparation of Calendula officinalis L.. The patient, as you did, had used many other medications before. Of course it does not mean you are gone have success using it too. We know that our support is part of the treatment too. He was really dependent on his mother, although he was already 18 years old. And we talked about this questions with both. So, stress is something that we are all exposed. We have to find ways to deal with it. Meditation, walking in green areas, exercise... We can not forget that we must consider the person. I like to ask the patient how are all parts of his/her life; like: mental, physical, spiritual, sexual, social, emotional, familiar, work..

See the attached figure (taniart.wordpress.com/tag/maslow/) from Maslow's hierarchy of needs

For you I would ask to test thyroid hormones.

Finally, I am not offend. I no nothing about images and about digital manipulation. We have his files and some from other patients who had good results using Calendula.

You know, it its very difficult to publish case reports, but this one has brought a lot of interest from people that have the same condition. It was a surprise. The last one is a lette from an England girl that suffers wih exfoliative cheilitis. She wants to use the same we have here, because she has read that Calendula plant in Brazil may have different properties.

Wait to hear from you.

Good luck!

Janete

[I have been tested for thyroid hormones and the result did not show anything unusual]

Calendula Ointment 9% Trial

2010-03-13T16:34:00.055+01:00

About two month ago I found the fairly new case report Topical Calendula officinalis L. successfully treated exfoliative cheilitis: a case report (published november 2009), and I started this new treatment trial on mars 11 with a calendula ointment 9%. I use the ointment several times a day, whenever my lips begin to feel dry.

The Case report

According to the case report "topical Calendula officinalis ointment 10% has successfully cleared the condition", in just 15 days. The article looks professional and is well written. It is also published on PubMed (National Library of Medicine's medline and pre-medline database) which gives it some credibility. I talked to my doctor about it however and she said that one documented case rarely indicates a significant result. She also said that Calendula is not used in any medication you will find in a pharmacy or prescribed by a doctor. In lack of other options she thought I could give it a go anyway.

One thing is dodgy about the article (besides the to-good-to-be-true 15 day recovery) and it is the two identical and clearly photo manipulated before-and-after pictures. I don't know the reason for this, but instead of speculating about it I am just going to try the treatment so I can cross it off.

The Calendula ointment

The ointment used in the report was a "topical Calendula officinalis ointment 10%, a preparation done as per Pharmacopoeia (1064)". According to Wikipedia Pharmacopoeia is a "book containing directions for the identification of samples and the preparation of compound medicines, and published by the authority of a government or a medical or pharmaceutical society." I have been in contact with one of the authors of the article but she has not been able to name the specific ingredients of the ointment (she does not seem fluent in english and maybe did not understand my question).

The ointment I use is called Maria Trebens Calendula Ointment and I found it at a local health store. It consists of calendula and animal fat (pig fat), that's it. According to the retailer (which I spoke to) it's 10% calendula. However the ingredients list says 9 grams, which is 9% of 100 grams. 1% should not be a big deal any way. She also told me that animal fat is the most beneficial fat to use as it enhances the effect of the calendula (compared to oil/fats from plants). The ointment is yellow, medium thick and melts quickly on your lips. The sensation is very similar to olive oil.

Lips Status before starting the treatment

My lips have been behaving pretty much the same as the last couple of months. They get dry, the lower lip peel, the skin underneath has been a different variation of "raw" (from mild to very raw – no blod though). The skin flakes maybe have become a little thinner nowadays compared to how they were 6 months ago. I'm off the Valtrex pills since the beginning of the year and have not noticed any change from that. I have only used my bees vax lip balm to moisturize my lips.

I will make another update in 1-3 weeks. Stay tuned, and stay strong people.

Lips before starting trial.

Facebook Group is Growing

2010-03-13T10:49:00.010+01:00

Since january 3 fifteen more people have joined, and the group is now up to 28 members from around the world. A big welcome to you all!

Purpose of the Group

The group is secret and will not be visible on your Facebook profile page. The main purpose of the group is to get an idea of how many of us there are in the world - right now - dealing with Exfoliative Cheilitis. This is impossible to estimate using the Curezone forum where people come and go all the time, but it would be very easy using FB - we would actually get a number. This is the most important purpose of the group. Chatting is of course ok!

How to join?

Send a friend request (not just a message!) with a message to my Facebook Profile and I'll send an invitation back to you. Due to Facebook's configuration I can only invite you if you are on my list of friends.

Protopic 0,1% Trial – Postmortem

2010-03-13T09:57:00.007+01:00

This will be a very short summary of my 21 day trial with Protopic 0,1% (which ended january 10, 2010). I applied the cream two times a day, in the morning and before going to bed.

Did it help?

I have not noticed any improvement, my condition is pretty much the same as before. I write this two months after I ended the trial and my lips are not better nor worse than before.

Side Effects?

I have not experienced any side effects. The only thing I noticed was that for a couple of days I got a new fordyce spot on my upper lip, which looked a bit red. It disappeared after a couple of days, came back a month later and then disappeared again. It's not possible to say whether this was linked to the Protopic or not.

What's next?

After discovering the fairly new case report Topical Calendula officinalis L. successfully treated exfoliative cheilitis: a case report (published in november 2009) I will do a trial with a calendula ointment.

Protopic Trial- Round 2

2010-01-03T11:36:00.012+01:00

I had a phone conversation with my doctor on 21 december last year and since I had no results with Protopic 0,03% she decided I should boost the percentage: I am now doing a three week trial with Protopic 0,1%. I apply a thin layer of cream on the affected areas on my lips two times a day (mornings and before going to bed).

Day 1-14 Summary

So far nothing have happened, either good or bad. No improvement, no side effects. The cream feels like vaseline/petroleum jelly on my lips. I'm still eating 500 mg Valtrex per day, so maybe that is countering some of the known side effects (like various forms of herpes simplex viruses).

My peeling cycle is pretty much the same as stated in the Protopic 0,03% Trial post.

One more week to go.

PS. I hope you all had a great holiday and New Year!

Protopic 0,03% Trial - Day 39 Postmortem

2010-01-03T11:08:00.012+01:00

This is the summary of my trial with Protopic 0.03%. I have been using it two times a day for 39 days.

Have it helped?

I have not noticed any significant improvement. In the beginning I experienced that the skin underneath the flakes was less raw than before, but now I'm not sure that was due to any effect of the Protopic (during this trial the skin's "rawness" have varied from peel to peel).

Side Effects?

I have not noticed any side effects during this trial, except for a slight numbness and a tingling feeling on two different occasions the first week. Possible also that the lower border on the lower lip have been a little more red than it was before.

The Next Step

After a phone conversation with my doctor I am currently doing a three week trial with Protopic 0.1%. Read more about that in the Protopic Trial - Round 2 post.

Facebook Group Goes Secret

2009-12-06T19:06:00.007+01:00

As an experiment to attract more members to the Exfoliative Chelitis Facebook Group I have now made it secret. This means it will not show up on your profile information page. I discussed the pros and cons of a secret group in this thread.

Purpose of the Group

The main purpose of the group is not necessarily to chat but to get an idea of how many of us there are in the world - right now - dealing with Exfoliative Cheilitis. Are we 25? 250? More? This is impossible to estimate using the Curezone forum where people come and go all the time, but it would be very easy using FB - we would actually get a number. This is the most important purpose of the group.

How to join?

Send a friend request with a message to my Facebook Profile and I'll send an invitation back to you. Due to Facebook's configuration I can only invite you if you are on my list of friends.

Right now there are eight brave members in the group from at least four different countries. But there is room for more - so come on people, join! :)

Update January 3 2010

To make the group secret was apparently a wise choice: The group is now up to 13 members. Thank you everybody!

Protopic 0,03% Trial - Day 1-25 Summary

2009-12-06T17:33:00.009+01:00

About three weeks ago I started a Protopic 0.03% (topical tacrolimus) treatment prescribed by my doctor. I have been rubbing a thin layer of cream on the affected areas of my lips twice a day (in morning and before going to bed).

Have it helped?

I have not noticed any significant improvement so far. The only thing I have noticed is that the skin underneath the peeling skin might be less raw than before.

Side effects?

I was very hesitant to try Protopic as I wrote in this post. Luckily enough I have not been noticing any of the scary side effects (not even the very common burning sensation). On day 3 my lip felt slightly numb though, and on day 5 I felt a ticklish sensation on my lip when touching it with a cotton swap. Other than that, nothing.

Current peeling cycle

My current peeling cycle looks like this: the skin builds up like before over the course of 1-3 days. On the forth day I can usually peel everything off without too much force. On day 5 and 6 my lips look their best. Day 7 it all starts over again. Sometimes this cycle differ a little.

I have not got any treatment time limit so I will have to book a phone meeting with my doctor and ask. Until then I will continue using Protopic.

Decent day.

Not so good day.

Good day.

Exfoliative Cheilitis Biopsy Result

2009-11-08T14:26:00.004+01:00

I have recieved the analysis result from the biopsy I did earlier this summer: it did not show anything significant/new except a general inflammation of the skin, i.e. cheilitis.

The medical doctor told me she had read up on the few articles out there and also discussed treatments with collegues. She advised me to use a moisturizer (vaseline) and try Protopic 0,03% (an antiinflammatory immunosuppressant cream).

I will not go into details about the discussion I had with the doctor about how to proceed with an evaluation of the treatment, new tests, research etc. All in all there will be none. No more appointments, no evaluation of the treatment, no further tests. Somehow I got the impression when I met her the first time this summer that she would not "let met go" so to speak, like all the other doctors have done, but I guess I was naive. Basically she told me "we can't just do random test in order to find anomalies, and there is not enough people with your condition to initiate any research".

I understand that this is the way things go (I have studied scientific theory and experimental design in university), but it made me angry and upset anyway. She did not even ask how (or if) I would cope with this, which I felt was a little strange considering that she has just confirmed that I have a chronic condition to which there is no consistent successfull treatment (except in one documented case), and that will not be researched because to few people suffer from it. Ouch.

To use or not to use Protopic

Alot of people on the Curezone Forum have tried Protopic with different results: small improvements, worsened condition to no change whatsoever. I have not heard of anyone that was cured completely.

According to the patient information leaflet Protopic have some common (> 1%) side effects like skin irritation, rash and herpes viral infections. Some individuals on the forum have reported that their exfoliative cheilitis first worsened for a couple of weeks before they saw any improvements (if any).

However there is one documented case where Protopic have been a successful treatment ("Exfoliative cheilitis successfully treated with topical tacrolimus", Authors: M. Connolly, C. Kennedy. Published in: British Journal of Dermatology Volume: 151, Pages: 241-242,Year: 2004). I have not read this report myself in it's entirety but you'll find what seems to be a summary in a forum post here.

I'm hesitant to Protopic for two reasons: first I'm not really up for a potentially worsened condition right now since I'm low on energy and have a alot of social activities planned for the comming weeks. Second, there might be a link between Protopic and cancer. There are quite some articles online about this, just google "protopic" and "cancer". There is also a paragraph in the patient information leaflet:

"Since commercial availability a very small number of people who have used Protopic ointment have had malignancies (for example, skin or lymphoma). However, a link to Protopic® ointment treatment has not been confirmed or refuted on the available evidence so far."

Has not been confirmed OR refutated. Hm... But then again, almost everything these days is linked to cancer. I will do a trial with Protopic, I just need to prepare myself mentally and regain some energy first.

You can read the Protopic Patient Information Leaflet in it's entirety here.

Lips update

This is what my lips looks like today. There have not been any significant improvements in the last couple of weeks. If I don't do any manual peeling the skin builds up and whitens. When it eventually peels the skin underneath is raw and sensitive. The lip looks best one of two days after a peeling. For me I think the best strategy is to manually peel the skin every day or every other day, because the lip seems to become more inflammed (more red) if I let the skin build up. But I need to do some more testing before I can confirm that.

Peace and energy to you all!

Kropp & Själ Radio Interview

2009-10-18T13:49:00.013+02:00

Here is the Kropp & Själ radio interview with me about my exfoliative cheilitis and why I choose to blog about it (only in swedish).

The theme of the program is "illness blogs", and besides the interview with me, it features a discussion with a researcher and a medical doctor (and a few other people) about these kinds of blogs - who do it, why and what value it has. (Note that exfoliative cheilitis is not discussed).

I am happy with how it all turned out, and I'm glad I followed through with this when I first got the idea a couple of months ago - my goal was to have "exfoliative cheilitis" said on public radio, and the explaining of the symptoms, and I succeeded with both. Hopefully this will help other people in the same situation to find out more about their condition, and maybe it will lead to something positive for all of us in the EC community.

So far the episode has generated a couple of supporting emails, some random tips and theories from mostly anonymous persons, some treatment offers from alternative therapists and one psychologist (I will post more about this if I go through with any of them). Not to forget a major boost in traffic to my blog (since the Kropp & Själ staff was kind enough to link to my blog on their site).

Back to Lip Balm - Day 29

2009-09-19T19:03:00.018+02:00

I've been on a blog brake for a while. When I started this blog project I decided early on to spend a limited time on it, and not make it the center of my life. I think this strategy is crucial for maintaining mental health - my condition is a part of me, but not my whole identity.

Short summary of the past weeks:

The interview I did on monday two weeks ago went pretty well: I explained the symptoms, said the name, possible causes, told the reporter about exfoliativecheilitis.com and this forum, my story etc.

It was a bit hard for me to be precise and coherent, because there is so much emotions associated with this experience, too many doctors, too many treatments. I hope she will edit out all my "uuh" "eeh" and "hmm"'s :)

The interview will air on tuesday 29 september (today). Since it will be in Swedish I will transcribe it for you guys when I have the time. I really hope it will lead to something positive for all of us.

Lip Status

My lip is so-so, some days it looks pretty good, other days it does not. The lip balm has really helped, but the skin is still peeling in big and small yellow flakes, some thin, other more thick. It is like taking two steps forward, and the two steps back. But at least there is improvement compared to how it looked during this summer.

You can see the progression from the day I started using a lip balm again to today (september 1-29) in the picture gallery below.

Back to Lip Balm - Day 1 - (Sep 1-)

Big News! Public Radio will Interview Me

2009-09-12T13:25:00.017+02:00

On monday september 14 a journalist from the swedish public radio show Kropp & Själ ("Body & Soul") will visit me and do an interview (not live). The report will mainly be about my blogging and the use of other social media to bring awareness about exfoliative cheilitis (and probably also about "disease blogging" as a concept). Note that this is not a guarantee that the interview will ever air, but hopefully it will :)

Earlier this summer I emailed the editorial staff of the show and told them about my story along with a link to my blog. I wrote about this in the post Let Us Create Media Attention - Why and How on the Curezone forum.

My goals for the interview (so far):

* to explain my symptoms and get the name exfoliative cheilitis heard

* bring attention to the lack of research

* call out to fellow sufferers, doctors and researchers that have/or want more experience with exfoliative cheilitis and want to help

Do you have any more ideas on how to make the most of this interview? Contact me!

My Current Setup - Update

2009-09-12T10:45:00.014+02:00

This is pretty much the same regime I did during the years when my lips were in balance (2005-2009, up until June1), except for the Valtrex pills and meditation (I did progressive relaxation then).

Treatment Routine
Morning procedure: After breakfast and brushing my teeth, I gently "clean" the lips in a circular motion with a cotton swab dipped in luke warm water. Next I very gently apply some lip balm with a new cotton swab, in an even thin layer on the lips, also in a circular motion.

If there are loose flakes they usually peel when I do this. If the skin still is attached to the lip I sometimes leave it alone, and sometimes I continue to gently rub it in a circular motion with lip balm on the cotton swab, and it usually peels after a while. If I manually peel it like this, I don't use any force, just a gentle circular motion as described above.

After I have finished I usually take some kitchen paper and gently press it against the lips (especially around the borders and the corners of my mouth) to make them look less glossy.

Evening procedure: After I have brushed my teeth, I usually do the same procedure as in the mornings, except I usually don't do any manually peeling, and I don't use any kitchen paper.

Lip Balm

* Munkens Bisalva (water free lip balm manufactured in Sweden. I store it in my fridge to make the consistency a little harder and colder than it would be in room temperature. Ingredients: Paraffinum liq., Cera flava (non bleached bees wax), Olea europaea (olive oil), Eugenia caryophyllus (clove and/or carnation oil - I'm not sure which one), Propolis cera (resinous mixture that honey bees collect from tree buds, sap flows etc.), riboflavin (vitamin B2).

Medication & Supplements

* Valtrex - 500 mg per day

* Omega 3 Fish Oil - 1000 mg x 2 per day (two capsules)

Diet

* Fish, eggs, chicken and lean meat

* Wholemeal pasta and bread

* Brown rice, bulgur and quinoa

* Lentils and beans

* Greens, fruit and berries - 500 gram per day (minimum)

* Nuts and seeds

* Olive oil, rapeseed oil and flaxseed oil

* Milk, yogurt and cheese

* Water - 3 liters per day

Lifestyle

* Exercise - 30-60 minutes 3-5 times a week

* Sleep - 7-8 hours per night

* Mindfulness meditation - 40 minutes per day (body scan, focused breathing etc)

* Sun - 20 minutes per day (minimum)

* A social life (talking to/meeting family and friends on a daily basis)

Back to Lip Balm - Day 12

2009-09-12T10:01:00.006+02:00

Four days after the big peel. I switched back from the aloe vera gel to my regular lip balm ("Munkens Bisalva") yesterday. I figured I got to stick with one thing at a time, for a couple of weeks at least to see how it affects the peeling.

Yesterday my lips were beginning to show signs of peeling and a change in skin tone (pink to yellow) near the vermillion border, so it takes about 3 days after a complete peel before the beginning of the next cycle for the moment.

The video clip is from yesterday, the picture was taken today.

New member in Facebook Group

2009-09-10T10:41:00.010+02:00

Finally.

Finally a member in the Exfoliative Cheilitis Facebook Group. I have been the only member for months which have felt both lonely and almost strangely embarrassing. I totally understand and respect the fact that people are not interested or not ready to join, but it is always nice to have some company in such a "public" place as FB.

Purpose of the group

Like I have said before, the main purpose of the group is not necessarily to chat, but to get an idea of how many of us there are in the world - right now - dealing with exfoliative cheilitis. This is impossible to estimate using the Curezone forum where people come and go all the time. There may be reasons not to join (lack of interest, the need for an EC-free zone, lack of energy, feelings of fear and embarrassment etc - trust me, I have struggled with all of them), but I believe this would be an effective way to get some data. Of course, a great bonus effect will be a sense of community - that we are not going through this alone.

So, fellow EC-friend, you are more than welcome to join. In your own time, when you are ready.

Thanks again Jasdeep!

Back to Lip Balm - Day 10

2009-09-10T10:20:00.005+02:00

This is 48 hours after the second big peel of my lower lip since I started moisturizing again. I'm guessing this will probably be one of the better stages in this peel cycle; a pink layer of skin has grown back, and the skin near the vermillion border has just started to peel a little bit. The vermillion border is a deep red tone which indicates inflammation, but the swelling has gone done.

Yesterday I bought some cold processed aloe vera gel called "aloe 99" and applied it to my lips. It was very much a spur in the moment thing. My plan was to use the same bees wax lip balm (called "Munkens Bisalva") I used during the years my lip looked good, but I decided I will try this aloe vera gel for a couple of days just to see what happens. Since it's a gel it is absorbed into the lips rather quick, and it is also quite soothing due to it's cold(ish) temperature. If I don't notice any changes in a couple of days I will start using my standard lip balm again.

Back to Lip Balm - Day 1-9

2009-09-09T18:19:00.016+02:00

Nine days ago I ended my No Lip Balm Experiment (lasting about two months) and started using a lib balm again. This is the summary of the first nine days.

Immediate reactions

This affected my lips right away; about 45 minutes after the procedure the first big crust fell right of. It was like it just melted away (the lip balm made it so soft). A couple of hours later the second one fell of. About a day later, the third one.

"Normal" after 72 hours

On the first two days my lower lip looked swollen and red, but on the third day, it actually looked fairy normal (just a little yellow crust in the upper left side). This was by far one of my better days all summer, I did not worry about my lip at all, it looked alright, I felt "normal", had tons of energy. I realized how much my exfoliative cheilitis had been affecting my energy level, even though my mood had been pretty balanced. To top it off I gave my first speech at my Toastmasters club. That was a perfect day. I felt hope. The second day was almost the same. My lip looked a little bit chapped, but great compared to what I have been used to this summer. Maybe the worst was over now?

The peeling continues

During the fifth and sixth day I realized it was not. The lip balm kept my lip from drying out, but the exfoliation cycle started all over again, beginning from the vermillion border. I also noticed some other symptoms, one or two red spots on my lower lip, looking almost like blisters but more like they were under the skin, and the corner of my mouth became red and irritating. This could be oral herpes symptoms, so I took an extra Valtrex pill that day (two of my doctors believed I had oral herpes in the beginning of the summer - read My Story for more details).

The following day was a hard one mentally for me. The "blisters" were less visible, but the skin on my lower lips was building up into yellow thick crusts again, my lip was red and swollen and I felt like I could not take anymore. My lip balm had sort of been my last hope, but now I understood that my lips would not heal up that easy.

Red and raw

That night I put on more lip balm and went to bed. Same thing the next day. Yesterday I did the same thing and slowly and as gently as I could peeled of almost the whole layer of skin from the lower lip. It did hurt a little bit, and I thought to myself that this was probably not a good idea, but a part of me wanted to see what would happen. Maybe constant peeling is a positive thing, instead of letting the lip build up? Whatever the answer is to that question, at that moment I did not care. Off with it all (except for a small yellow crust on my left side), leaving my lip very red and raw the first couple of hours. After five hours they slowly began to take on a more pinkish tone.

The journey continues

Today my lip look so-so. There is a red line across the middle of the lip which still looks a bit raw, but it does not feel sensitive at all. I have realized that this journey will continue wether I feel ready or not. I have accepted that. From now on it's one day at a time.

No Lip Balm Experiment Postmortem

2009-09-06T16:04:00.013+02:00

On monday evening last week I decided to end my No Lip Balm Experiment, and I used a lip balm again for the first time in 62 days (I'm on day 6 now). Here is a short summary of the experiment:

What happened to my lips during this time?

When I stopped using a lip balm the skin on my lower lip soon turned into big white crusts, which fell of in 4-10 day cycles. The skin underneath usually looked and felt pretty normal, although a little red and sensitive. In the beginning there were more smaller crusts forming on my lip, but after a couple of weeks there was usually just two big ones, on the left and right side, which fell of at different times (like there was different peeling cycles for the right and left side of my lip). The peeling cycle seemed to slow down a little bit after a couple of weeks, but did not stop entirely.

I did not notice any significant improvement really when I compared the pictures from the first weeks with pictures from last week. The crusts were not so big and seemed a little thinner in the last weeks but that was probably because I trimmed them on a daily basis so they never got to build up.

One surprise though was that my lips turned out to be much more elastic than I thought they would be.

Stress and Mental health

The experiment was extremely challenging. I was able to maintain a pretty stable mood during the whole thing but it always felt like I was walking on a tight rope above a bottomless black pit of madness and depression. I did my best to keep calm by tuning out my feelings of frustration and instead focusing on the good things in my life. That strategy worked pretty well. Acceptance training and practicing openness about my condition also worked. Same for spending time with family and friends, and keeping busy with things I like doing. But it was very, very tough time for me.

I will probably write a longer post on my strategies for maintaining a balanced mood and coping with stress in the future

Reasons for ending the experiment

The main reason was that I did not see and feel any significant improvement, but I also choose to tune into my feelings about this and realized I did not want to have to deal with the stress of a chapped and crusty lower lip anymore, when a option was available (lip balm). I felt that I had really stretched my comfort zone during these 62 days, but I was not so sure I could go on anymore (just to see what would happen) and maintain my mental health. I suddenly felt extremely tired and done with the whole thing.

Conclusion

In my case, 62 days without a lip balm did not result in any significant improvement for my lips. There is always a possibility that 62 days was too short a time, and that other people will get other results from a similar test.

If you have any questions about my experiment just send me an email. Even though the experiment is over, I will continue blogging about my exfoliative cheilitis.

No Lip Balm Experiment - Day 40-60

No Lip Balm Experiment - Day 61

2009-08-30T17:52:00.011+02:00

Lip Status

Today my lips does not look as good as in the post two days ago, like expected. But considering I have not used any kind of moisturizer for 61 days (I can't believe it's been that long), they don't look too bad either. It's really the vermillion border that is most screwed up; the crusts grow thicker and hard there and is more yellowish in color. Further down the skin is much more thinner and almost a transparent white.

Experiment Status

It's hard to tell if the experiment is a positive thing or not for my lip. I don't seem to get so big crusts anymore (as in the beginning) but that could be to the fact that I'm trimming a little bit almost everyday. The lips are surprisingly elastic. I don't think they will turn any more worse than this at least. I'm still hesitant to begin to use a lip balm again; a part of me want to go back to lip balm which would hopefully restore my lips even more, another part of me isn't so sure. I keep thinking "I've already done 61 days, the lips are not getting worse, for the moment I can manage the stress, what if the peeling would slow down even more..." I have to take this one day at a time. Maybe I go back tomorrow, maybe I won't.

Uploading clips of my lips still feels weird - even after 61 days.

Setup Status

I'm not noticing any result from the borage oil (I've been on it for about a month) so I will stop taken that for now.

Community Status

Another swede contacted me today on Facebook. Now we're three guys and one gal - great! Still no members in the Facebook club though, which does not surprise me. People have been telling me they are not ready to join, they're busy dealing with the stress of their peeling lips. But if people decided to join it would be an easy way to see how many fellow EC'ers we are in the world right now.

No Lip Balm Experiment - Day 59

2009-08-28T20:42:00.013+02:00

For the moment my lips look pretty good; they are a little chapped but I only have one white crust on the right side. I still have my sense of touch on the left side even though it peeled three days ago.

On days like this I feel like I can just keep on going, but I also know that my lips nowadays can change status in less than two days -from good to bad to downright ugly. I have been thinking about going back to using a lip balm after day 60 (tomorrow that is), but I have not decided yet. What do you guys think?

No Lip Balm Experiment - Day 56

2009-08-25T19:57:00.007+02:00

Today my lips look okay, a little chapped. It's in the beginning of a new peeling cycle and I have trimmed some of the excess skin. The tool I use for this is a small scissor (as seen in the picture), although it's a bit too big for the delicate precision work that trimming lips is. It is difficult to trim small part of a crust without ripping the whole thing away. I need something more sharp and precise. Anyone got any tips?

It's interestingly easy to get used to such a surreal activity as lip trimming. In the morning I'm like "go to bathroom, brush my teeth, trim my lips ho hum..." I find it quite amusing that I trim my lips more often than my facial hair. :)

No Lip Balm Experiment - Day 50

2009-08-19T18:46:00.013+02:00

Day 50. Wow. The 2-3 layers of skin on my right side is merging into one thicker crust, I'll see if I can trim that tomorrow. The left side is slowly turning whiter but still looks pretty alright.

I've been telling more friends about my condition, visiting some of them for the first time with my lips in this state. In some ways it feels a lot like coming out as gay: the initial nervousness, the feeling of letting go and showing the real you without knowing how they will react, the explaining part, and the final feeling of freedom and being accepted for who you are.

I've realized that the more open I am about this, the easier it is to handle.

This was not the approach I took to the first time around 2003; then I basically did not tell any of my friends and became a depressed lonely, nervous homebody as a result. It may feel weird, unnecessary or even scary to tell people about this, but in the end it will make you feel so much better and take away a lot of stress. Again: people don't care.

On saturday I will attend my cousins wedding. I phoned him today to chat and tell him about my condition (sooner rather then later). Minutes later his fiancée called me to get a more detailed description about it. I think neither or them really understood what I was trying to explain before they saw my blog (Hi Jonas and Jenny, see you saturday :)

No Lip Balm Experiment - Day 48

2009-08-17T20:42:00.011+02:00

I'm still trimming. For the moment I get these results: 1) the skin seem to build up into much thinner layers, and 2) instead of one thick crust there is now 2-3 very thin layers on top of each other. At least this goes for the right side. My left side actually looks pretty normal for the moment, even though it's going to peel sooner or later (I know because I'm loosing my sense of touch there).

I have also been contacted by fellow swede number two. Now we're at least three guys here. Is there any more?

For the moment I'm visiting one of my sisters. Socializing with family and friends can really help you take your mind off your troubles – it's very hard to feel anything but happy when a one-year old toddler tries to climb you like a tree and then out of the blue says "badahba" and hugs your knee. I highly recommend it. :)

No Lip Balm Experiment - Day 45

2009-08-14T21:02:00.004+02:00

I accidently removed the crust on the left side of the lower lip last night. The skin underneath was red but not raw. Today I did more trimming. A couple of hours later I could do some more. I only trimmed the skin that had gone completely white and was hanging loose. For the moment the skin on my lower lip seem to be build up in thin layers if you compare them a couple of weeks ago. We'll see if they stay that way. Be well you all!

No Lip Balm Experiment - Day 44

2009-08-13T19:16:00.003+02:00

More trimming today. We'll see if it is effective in the long run.

A guy with EC from Sweden contacted me yesterday. Guess I'm not the only one here :)

My Current Setup

2009-08-11T15:27:00.009+02:00

Medication & Supplements

* Valtrex - 500 mg per day

* Borage Oil - 1065 mg x 2 per day (two capsules)

Diet

* Fish, eggs, chicken and lean meat

* Wholemeal pasta and bread

* Brown rice, bulgur and quinoa

* Lentils and beans

* Greens, fruit and berries - 500 gram per day (minimum)

* Nuts and seeds

* Olive oil, rapeseed oil and flaxseed oil

* Milk, yogurt and cheese

* Water - 3 liters per day

Lifestyle

* Exercise - 30-60 minutes 4-6 times a week

* Sleep - 7-8 hours per night

* Mindfulness training - 10-30 minutes per day

* Sun - 20 minutes per day (minimum)

No Lip Balm Experiment - Day 42

2009-08-11T14:21:00.015+02:00

My lips feels surprisingly elastic, considering that I stopped cold using lip balms 42 days ago. I can smile without any problems for example (not always, but most of the time).

I trimmed my lips for the second time yesterday (you can see the before and after picture below, 24 hours in between). I've been a little hesitant to do that because the first time I did it resulted in a two-layer crust instead of just one. But I will start to experiment with trimming on a more regular basis now to see what the result will be.

No Lip Balm Experiment - Day 40

2009-08-09T20:19:00.012+02:00

Status

Today my lips feels pretty normal. I trimmed the right side a little because the crust was getting really big and had pretty much peeled completely anyway. The skin underneath has already started to dry and become white. The new crusts does not seem to be so thick.

Since the start of the experiment my right side has peeled three times, my left side two times.

I have been using borage oil for the past three weeks, both eating it and applying the oil topically. According to some people this worked for them. I have not noticed any difference so far though.

Has anything happened since the start?

* When I started this experiment my lower lip hardened into several part. Now my lips harden into two whole parts, left and right.

* The middle of my lip used to split, but for the last days it has remained in one piece.

* The peeling seems to have slowed down but it is hard to really tell. Maybe it is because my lip hardens into two big crust, and it takes longer for them to peel completely.

Reflections

I really don't know where this is going. I will probably continue the experiment for one more peel but after that I don't know. It takes quite some energy to live with this and still stay in a good mood. The key is not do think about it so much, just observe.

Volunteer Work

Two week ago I really stretched my comfort zone by being a volunteer at the Stockholm Pride Festival. I had planned this for several month but I thought about dropping out every day since my lips got worse again (june 1). But I finally went through with it. Being a volunteer at this festival means social interaction with many people everyday. This year I was a "journalist" writing articles, meeting many people almost all the time every day, doing interviews, attending seminars etc. I was absolutely terrified the day before the festival started, I felt sick and dead tired. But somehow I managed to get through almost the whole week before I got a really bad cold. This is what I learned during those days:

* People don't really care about your lips. It's possible to interact with people even when your lips look bad. If you don't care, they don't care. Beside, everyone are busy with their own issues.

* Things get a lot easier if you talk about your condition, instead of trying to hide it. Before I started my volunteer week I emailed everybody in my work group telling them about my EC. It felt strange to email to people I had never met before and a little bit paranoid, but I also felt relieved. Now everybody knew about it and I did not have to explain my condition to everyone I worked with. During the week some of my fellow volunteers told me I did the right thing sending that email.

* Get busy. The more time you spend interacting with people and concentrating on tasks at hand the more your awareness about your lips will tune out. As an example, I could do three interviews in a row and completely forget about my lips. So stop thinking and just immerse yourself in whatever you are doing.

Here is a picture of me from one of the articles I wrote.

Photo Albums

2009-08-09T17:30:00.014+02:00

My albums

Pictures from 2006-2009

EC retriggers (June 1-30 2009)

No Lip Balm Experiment - Day 1-39 (July 1-August 8, 2009)

No Lip Balm Experiment - Day 40-60

Back to Lip Balm - Day 1 - (Sep 1-29)

Curezone Forum Gallery

You can see other people's photo albums in the Curezone Forum Gallery.

My Story - Short and long version

2009-08-08T16:51:00.021+02:00

I have tried to put everything in a chronological order but I can not guarantee I remember correctly; I have been to too many doctors and tried too many treatments. I may edit this post every now and then.

Short version

Symptoms

2003-2004

I wake up one morning with very dry, red, inflamed lips. Lower lip peels on a daily basis. Skin on lower lip turn white when in contact with water. I have to moisturize at least every hour. Fordyce spots starts to appear on my upper lip during the year. The condition cause me to change the way I eat, drink, brush my teeth and wash myself among other things.

2005-2009

As the years goes by the lips slowly become better. Lower lip is still peeling, about every 3th-4th day, but only small, thin segments of skin. I gently rub off the loose skin with a cotton swab every morning and evening. Both lips become dry if I don't use a lip balm. My lower lip still turn white when in contact with water. More Fordyce spots appear on my upper lip. In the spring of 2009 I only need to moisturize my lips with a lip balm 1-2 times a day. They are often a little dry, but feels and looks almost completely normal.

June 1 2009

It started with a little with dot beneath the skin on my lower lip. In a couple of hours it grew and the lip turned red. Soon my lower lip was inflamed, sporting very small, barely visible blisters (I could not see them, but my doctor could). It was probably oral hepers according to two doctors. Skin on lower lip starts to build up into yellow/white crusts, and does not peel as easily as before. Skin underneath is raw and very sensitive.

After eating Valtrex (oral herpes medication) for four weeks the blisters are gone and the lower lip is less inflamed. Since I'm currently doing a No Lip Balm Experiment and don't use any kind of moisturizer the skin on my lower lip still builds up into big yellow/white crusts which fall of every other week. The skin beneath looks pretty normal, but become dry and starts to harden and crust within a few days. When the skin is starting to crust I loose my sense of touch there. My lips feels kind of normal though, not warm or swollen, I just feel the crusts on top of my lower lip.

Treatments 2003-2009

Hydrocortison (steroid creme)

Fucidin (steroid creme)

Aerius tablets (anti-histamine)

Kenacort-T (steroid creme)

Metronidazole tablets (antibiotic)

Daktarin oral gel,

Erythromycin (antibiotic)

Corsodyl mouth wash

Trimethoprim (antibiotic)

Kenacutan (steroid creme)

Emovat (steroid creme)

Change of toothpaste

Homepathic medicine

Hypnotherapy

Acupuncture and chinese "tea" medicin

Removal of a root canal filling

Allergic tests (dental materials, food (mostly fruits and greens) and food additives)

Omega-3 fish oil

Zink tablets

Multivitamin tablets

No dairy products

No fish diet

Vegetarian diet

Vegan diet

Borage oil

Biopsy (not a treatment at all actually but still worth mentioning)

Moisturizers

Olive Oil

Vaseline

Beeswax lip balm (worked best for me)

Olive Oil lip balm (worked as good as the beesvax)

Aloevera lip balm

Possible causes (only very wild guesses, I don't really have a clue)

2003

* Root canal filling. Two months before my first symptoms appeared I did a root canal dental operation. Some people believe fillings can be the cause of allergic reactions. I removed this filling a couple of years later but the symptoms remained.

* Long term stress. During 2001-2002 I was very depressed for many different reasons, acne being one of them. I can't say I was clinically depressed since I still could function socially in school and at home, but I had a lot of internal pressure for almost two years. Maybe this long term stress has something to do with EC? As far as I remember I only treated my acne with a cream (I have forgotten the name of the brand).

2009

* Stress. About two months before I got my first symptoms in June 2009 I experienced a very stressful spring because I ended my realtionship with my boyfriend. This is one of the most painful experiences in my life so far. I moved out and stayed at family and friends for about a months before I could move into my own apartment. I got my herpes symptoms after the first week I moved in. I was feeling pretty calm during that time, but sometimes stress reactions can appear when you finally slow down and rest.

* Dental filling. I did another dental filling a week before the symptoms appeared. I have done about four this year and have never experiences any problems though.

* Citric acid. Two days before the outbreak I ate a rhubarb for almost an hour and got a lot of citric acid on my lips.

* Party. I hosted a party with a friend two weeks prior to the symptoms, and shared my glass with many of the attendees. Maybe I got the HSV-1 there?

* Mouthwash. I started to use a new mouthwash when i moved into my apartment. I stopped immediately but the symptoms remained.

* Detox. Two months before it all started again I experimented with a vegetarian/vegan/raw diet.

* Less love. Less hugs and kisses (since I broke up with my boyfriend). Human touch boost the immune system, maybe that is why my lips were so healthy during 2006-2009?

Longer version

Up until 2003 I never had any problems with my lips as far as I can remember. I think I had dry lips sometimes, and I probably licked and bite them once in a while, but not on a regular basis. I do remember one time when I stayed home from school because my lower lip was slightly swollen and felt strange. This was probably around 1998-1999 and I was around 14-15 years old. It only lasted for one day and then my lips went back to normal.

2003

One morning november 2003 (I was 19 then), I woke up with a swollen and chapped lower lip. The first layer of skin was pretty much gone and it burned. I had no blisters. As I can remember, I had felt something was going on the day before. I had visited McDonalds and I remember having some trouble eating the fries because the salt created a stinging sensation on my lips. My lower lip was much worse than my upper one, but both became very dry very quickly. The skin on the lower lip peeled. During the following two year I went to many doctors and tried many treatments. Here is a summary:

* I first called a nurse. She told me to use Hydrocortison steroid cream on my lips. I tried that for a couple of days. The lips got a little better at first but soon turned bad again. The cream made the flakes on my lower lip yellow.

* Then I went to doctor #1. He had not a clue what it might be, maybe an allergic reaction to fruit (I ate fruit on a regular basis). He told me to stay off the fruit (especially the citric acid ones) for a while. He also told me to keep the lips smooth and recommended regular olive oil. I layed off the fruit but nothing happened, but the oil keep the lips from drying out. During this time I also changed my toothpaste every week to see if I was allergic. I finally settled on one without sodium laurel sulfate. It is called Zendium and I still use it today.

* A couple of days later I met doctor #2. He told me that my lips probably had been dry and that (unspecified) bacteria had settled in and caused an infection. He gave me the steroid creme Fucidin (a mixture of Hydrocortison and anti-bacterial ingredients) to put on my lips for two weeks. I did that for two weeks and nothing happened except that the flakes on my lower lip turned white.

* Next I visited doctor #3 ( a private one) in another city. She had no clue what to do and contacted a skin specialist to discuss it over. Maybe my lips could not handle the dry winter air? She told me to use vaseline instead of olive oil and hope for the best. The vaseline worked alot better than the oil, and I used it several times every day for the next year. It made all of the crusts come off really easy.

* I also visited a dermatologist. She did not know what to do and gave me Aerius 5mg (a histamine antagonist). It did not help at all.

* The next week I visited doctor #4, He did not know what to do and did not give any treatment at all, but he put me on a waiting list to a skin specialist doctor.

* I finally managed to get an appointment to the clinical skin specialist department in my city and there I met doctor #5, which was supposed to be the authority in this field. He said he knew exactly what it was: inflammation of the lip - cheilitis. He gave me a steroid creme called Kenakort-T. I should rub this on my lip four times every day for about four days. Then every second day for two weeks. He said my lips would turn back to normal in just a couple of days. I did this for four week without any positive result.

2004

* Shortly after that I went to Wales to be a trainee for a company for five months (thanks to a scholarship). This was very stressful experience because of my lips. I contacted a brittish doctor (#6) and saw him about 10-12 times during my stay. He gave me all sorts of antibiotics and mouthwashes but nothing helped. Here is the list: metronidazole tablets 200 mg (one tablet three times a day for two weeks) + Daktarin oral gel, Erythromycin 250 mg (2 tablets three times a day for two weeks + Daktarin oral gel + Corsodyl mouth wash, and finally Trimethoprim 200mg (one tablet two times a day for two weeks) + no dairy products.

* When I came back to Sweden I visited doctor#7. He gave me another steroid creme called Kenacutan for me to use for two weeks. That did not help.

* Doctor #8 gave me the steroid creme Emovat 0,05%. Did not help.

* Doctor #9 gave me the creme Unguentum M. Did not help.

* I also did several allergic tests at my local hospital: dental materials, food (mostly fruits and greens) and food additives. I did not get any significant reactions.

* My dentist also checked my fillings but could not find anything unusual about them.

I was very tired after my Wales experience and don't recall so much from 2004 lips-wise. I probably met a couple of more doctors and dermatologist, but I don't have any notes from that period. During 2004 I used vaseline as my moisturizer. My lips slowly slowly started to get a little better during this year (less swelling, a little less redness), although the peeling of my lower lip never stopped. I used the vaseline every day and gently rubbed off any loose skin.

2005-2009

* In 2005 I decided to try alternative treatments and met up with an homeopath. She tried to treat me for four weeks with different kinds of pills dilluted in water (Natriummur LM I think they were called) without result.

* I tried eating zink tablets. No effect.

* I ate omega-3 fish oil. No effect.

* I tried hypnotherapy (I was given autosuggestions while in a hypnotic - very relaxed - state), for a short while without results.

* Next stop was a chinese doctor. He listened to my puls and told me my liver was overheated. He tried to treat me with acupuncture and some kind of tea, and told me to lay off the fish. After about four weeks he just looked at my then quite crusty lip, shrugged and started to trim them with a small scissor. I did not go back, and I started to use vaseline again.

* I removed my latest root canal filling (I did the root canal operation about two months before I got my symptoms in 2003), without any results.

Shortly after my last meeting with the chinese doctor I had my first date with a guy I had been talking to for a couple of months on the internet. Since the chinese doctor had trimmed my lips and I had started to use vaseline again my lips actually looked pretty decent. But I was still very nervous and before we met I sent him a long message about my lips. We met a couple of hours after that and he could not understand what I had been ranting about. A couple of weeks later we were a couple and some months after that we were living together.

During the years we were together my lips looked and felt pretty normal. I switched the vaseline to a bees wax lip balm (less greasy) and applied it 2-4 times every day, and gently rubbed of any loose skin with a cotton swap every morning and evening. My boyfriend was very supporting although he probably thought I was exaggerating when I told him the story of my lips. Even though I eventually broke up with him (in april this year) I will always be grateful for all the love he gave me, and for making me feel normal. This is probably one of the better remedies for this condition.

Up until June 2009 my lips were almost back to normal. They still got dry and my lower lip peeled, but much slower than in the beginning and less and less frequent, about every 3-4 days. The peeling skin was very thin and the skin underneath was pink and felt normal.

June 2009

On June 1 2009 my lips started to behave unusual again. It started with a tingling sensation in the corners of my mouth and on my lips. I also got a sore throat. After a day of two my lips were red and swollen. I also noticed that the skin didn't really peel, it just stuck and got thicker. When I finally managed to gently peel it off the skin underneath was red and raw. It took a couple of days before I could met with a doctor and during this time my lips got worse (more red, warm, inflamed, chapped, more crusts).

* I told my first doctor about my lip history but she was pretty sure that it was oral (Herpes simplex virus 1/HSV-1) this time, because she could see very small blisters on my lips. She gave me Valtrex (500mg twice a day for five days). And I actually got better within a few days. I was so relieved I almost hugged her the next time I saw her. I also took a blood test to see if I had any vitamin deficiency but it did not show anything unusual (I was currently experimenting with a vegetarian/vegan diet). This doctor also sent my file as a referral to the Karolinska Institutet skin department in Stockholm, to examine my peeling lip condition I had told her about.

* Unfortunately the result did not last. Within a few days after I stopped taking Valtrex the symptoms came back. My doctor had vacation but I managed to get another doctor to give me some more Valtrex. Again the symptoms disappeared - and came back again when my medication was finished.

It was also about this time I finally found exfoliativecheilitis.com and the curezoneforum. Finally I knew what to call it, and I was not alone!

* This herpes cycle continued for about four weeks until I met another doctor who told me that sometimes you have to eat medication for six months to really supress the HSV-1. So I'm doing that now. This doctor also had me take a herpes test, but that did not show anything. He told me this was probably because I had already been on medication for four weeks.

* Between the first and third doctor, I had a meeting with the skin doctor at Karolinska Institutet skin department. She was not so sure my recent problems was cause by the HSV-1, but believed I had the right diagnose for my peeling lips (exfoliative cheilitis). She also admitted she had never seen anything like it (I had decided to stop using my lip balm a week before because I wanted to have something to show her), had never heard of it or knew how to treat it. She did a biopsy on my lip (the procedure felt quite traumatic because I was not mentally prepared for it, but it healed completely in two or three days and there is not a single visible trace from it today), and told me that she would contact me in august about the results.

I was shortly after this I decide to try the No Lip Balm Exeriment, and to blog and youtube the results. I have also used Borage oil for the last three weeks but I have not noticed any significant effects yet.

No Lip Balm Experiment - Day 25

2009-07-25T21:30:00.002+02:00

Today I trimmed the left side just a little bit with a scissor. Most of the crusts has not begun to deattach yet though, so I will leave them as they are. The split in the middle of the lip is more visible. The right side is still in one piece. Short post today, I'm a bit low on energy. Time to hang out with my friend who is visiting me this week.

No Lip Balm Experiment - Day 24

2009-07-24T19:44:00.002+02:00

Today my lips looked like this. One of the middle crusts fell of at lunch without me noticing it. My lower lip looks a little bit swollen, the border is a bit red (it's usually more pinkish) and feels slightly warmer than usually. Other than that, my lips feel perfectly normal actually. There is no mark from the biopsy to be seen. I can't believe it's been 24 days since I used any lip balm (I have used a lip balm several times every day for the last 5 1/2 years).

Thank you guys for all the support. I really really appreciate all the nice messages I've been receiving since I started the blog and posted the Youtube clip.

To answer some questions:

Why the experiment and online documentation?

* Collect data. I've never tried this for so long, and don't know what the result will be. According to some people (that includes cureforcurezon who made the website, and started the forum) their lips eventually got better with time. I try to not be too attached to the results though, it's easier to handle if I just observe what happens. Blogging, youtube and facebook makes it easy to document and make the results available to many people.

* Support. I wished there had been pictures or video clips on the web when I first got this 2003. I wished I could have showed them to all the doctors I went to, who either rolled their eyes and shrugged, or gave me the wrong diagnose. 2003 there was nothing, not even this forum. I didn't even know what to call my condition and I felt like a very lonely freak that first year. During the years I have googled and youtubed my symptoms, but I did not find exfoliativecheilitis.com and this forum until two months ago.

* I feel strong and calm enough to do it. Of course a part of me just want to cry, scream and smash things, but I kind of did that the whole first year. Instead I try to be like the people we see every day that gets through life in spite of their psychical, emotional or cognitive hardships. Someone pointed out that I looked kind of happy, and yes, I am rather happy. I can think and express myself, move around as I please, I have a job, my own place, food in my fridge and loving and supporting family and friends. Besides, I think you rather see me smiling instead of sobbing "why oh why cruel fate!?" from under the sheets. ;)

* The result from the biopsy will not come until late august, and with that, possible new medication/treatment. This is an opportunity to see what happens before any new medicatiion/treatment arrives.

* I can currently work from home. I may not have that opportunity in the fall.

* I've treated the symptoms for 5 1/2 years (lip balm, and gently helping the loose skin to come off), I know what kind of result that will bring.

* Give the finger to exfoliative cheilitis. You can't touch me! ;)

Reactions?

I except all sorts of reactions. We're all in the same boat here I know this condition can be extremely fruststrating and stressful, and it's not always easy to be positive when you're in the middle of the storm. I do favor encouragement.

First Exfoliative Cheilitis Clip on Youtube?

2009-07-23T19:39:00.000+02:00

Someone's gotta be the first. This clip is about two weeks old (7 July), two days after I had a biopsi (it's the little black spot on the right side of my lower lip). Here I'm about one week into the No Lip Balm Experiment. As you can see the skin on my lower lip has started to crust and peel. I will post more clips soon.

No Lip Balm Experiment - Day 23

2009-07-23T18:57:00.002+02:00

Quick post. 23 days ago I stopped using my lip balm and stopped to manually help the peeling on my lower lip. Today it looked like this. As you can see the right side (actually it's my left side my photo capture app is flipping it around, I'll fix this in future posts) is very crusty looking (there is at least two layers of skin here on top of each other), but they are quite loose and are beginning to detach (from the bottom up). Yesterday a big crust feel off from the left side (the right side) of my lower lip fell of (without any help from me). There was new skin underneath, a little red, but not raw. Does not hurt at all. We'll see how this will unfold.

Another thing, I've never seen a face pic of someone with exfoliative cheilitis (there are not so many pictures out there to start with), just close-ups of lips. Guess I'll be the first one to come out of the closet ;)

A more thorough update will come

2009-07-21T09:50:00.000+02:00

First post, just testing. I plan to do a more thorough update in the coming week(s) with my story, experiments, treatments etc. Also a daily picture diary. I'm currently doing a no-moisturizing-what-so-ever experiement. I'm on my third week I think and my lower lip looks... kind of crazy, but it's all good. Stay tuned :)