Saturday, August 8, 2009

My Story - Short and long version

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.


8 comments:

  1. hey is dis condition not curable at all????

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  2. Hi David,

    Before I begin I want to say I think you're truly a brave soul for writing about this annoyingly traumatic condition so openly, and even posting pictures of your trials.

    That said, I chose to write this publicly (and not in a private email) in case it will help others.

    My cheilitis was not nearly as bad as yours, but I've had it on and off for two years. I caught it while trying on a drugstore lipstick which had not been properly cleaned. Doctors prescribed hydrocortisone or strong antibiotic creams, all to no avail. The condition didn't worsen but it certainly didn't get better.

    What I find has helped me is the following, and hopefully it will work for you because I don't think you've tried it (but I don't know how it will work with your Valtrex): My holy grail item is hand sanitizer with 70% alcohol. The first day I tried it, I probably rubbed it into my lips 6 or 7 times a day, maybe more. And each time I did it, I would do it 3 or 4 times consecutively (so I guess you could say I did it around 30 times a day). After I did that, I would put hydrocortisone on my lips. My thought process was this: first, the bad bacteria had to be killed (alcohol). To allow the good to prosper, however, I needed to stimulate blood (hydrocortisone). To seal it in I put on some vaseline about 5 minutes after the hydrocortisone, and let that sink in for an hour or 2 before I did the cycle again. I combined that with drinking 2 liters of water a day and brushing my teeth 3 times a day.

    I hope this helps you. Don't give up, David, I know how it hurts to have this condition, but at the end of the day it's just a lip problem. You can fight it.

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  3. Oh yeah. If you (or anyone else) have any questions, I will be checking this post until October 31 2010. Just leave your email address and I'll send you a private message.

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  4. Good for you and I hope you are doing well!

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  5. I think I have cheilitis secondary to isotreitoin. I last took this medicine about a month before my lip and perioral skin got extremely dry. As the months passed my condition had worsened. The painful lips were what took me to the dermatologist. He said it was seborrheic dermatitis. He gave me a mometasone prescription. It would take away the redness of my skin but that only lasted a few days. I stopped the mometasone because I read steroid creams can thin the skin. I did notice that my lips were thinner and more wrinkled than before I applied this cream. I then tried Ketoconazol cream for 2 weeks. It helped a little but it's toxic if eaten. So now I have started to apply a cream with probiotics. It seems promising but I only have a few days with it. This problem has made me suffer for 6 months now. I am desperate and in pain.

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  6. I've been searching for a blog like this with others who have experienced this issue. I noticed that when I started drinking a soy based protein shake, that my lips would sting, especially if I didn't wipe off small amount of shake from my lips immediately. After a week, I noticed that the inside of my lips felt extremely dry and the outside of my lips had a slight tough texture. The next week, i had pain in my # 14 tooth but ignores it because I had a dentist appointment the following Tuesday. Monday, before I could make my appointment, I experienced a tooth abcsess, where the entire left side of my cheek was swollen beyond belief. I called my dentist, he wasn't available till Tuesday and they recommend that I go to the emergency room. At ER, I had the abcsess trained (still feeling the dryness of my lips) and I was told that I needed a root canal. I was prescribed antibiotics and took them as prescribed. I went to get the root canal and had that taken care of. Still in denial, and thinking the lip issue would go away on its own, I noticed that my lips started to have discoloration. That's when I decided to go to a dermatologist. The dermatologist recommended a food allergy test (I went to my primary Doctor to do so, they did a blood test and nothing came up) and said that the sensation I was feeling was an allergic reaction and to never drink that drink again because I'm allergic to one of the chemicals they add into it. He put liquid nitrogen on my lips and prescribed an antihistamine. He stated that I must also use a sealer to like carmex to protect the outside, but time and the antihistamine will heal the damage done to my inner layers of my lips. He also said that the antibiotic I was perscribed mad my issue worse, as that encouraged the discoloration, because the histamine and antibiotics were having a war in my lips. I finished my antibiotics and went for a check up today. My lips are slowly feeling better on the inside, but it is a slow process for the lips to heal. He put another layer of liquid nitrogen on my lips and perscribed antihistamine medication for another two weeks and said to come back in two more weeks, but I see a huge improvement. It will take time for it to go away but his advise was that I should have come in to see a dermatologist way earlier. My primary Doctor had no idea what was going on with my lips and highly suggested that I follow my dermatologist orders.

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  7. I find it really hard to comprehend that there isn't any one definitive reason we get this, things are fine one day and then you wake up and life is never the same.

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  8. I'm pissed because after having this for 3 years it's now spread to the upper lip. FYI I have been using Prevex cream on my lower lip for around 2 years. It does keep it at bay with regular rubbing off of dead skin. I recently went 2 weeks without and without rubbing off skin. Big mistake just looked gross nothing changed, new peel grew back every other day. Have a doctors appt. next week and hope to be referred to a good dermo.

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