How One Sufferer Decided to Do Something About Canker Sores and Help a Community

Canker Sore Relief Center: Hello Dallas. Why don't you introduce yourself.

Dallas: Hello, my name is Andrew Eschenauer, but I go by my nickname, Dallas. I'm 47 and I live in Phoenix, Arizona. I work for one of the county's largest systems integrator. I am currently contracted out to a major semiconductor manufacturer where I support desktop PC's in the Office Automation group. I've had RAS for at least 22 years.

Canker Sore Relief Center: When did you experience your first outbreak of Recurrent Aphthous Stomatitis and were you able to put a name to the condition you were experiencing?

Dallas: It's hard for me to remember when mouth ulcers first began to bother me, but I do remember the doctor I saw at the time. From that, I know where I was living and working and that puts my age then at about 25.

Fifteen years ago, I was seeing a dermatologist in Texas for my acne and he was treating me with Acutane, which cured that. Acutane is some pretty intense stuff and I was required to go in for a follow-up six months later. I saw a poster on the wall in one of the rooms describing Dermatology and right there it mentioned treatments for disorders of the mouth. I had a few ulcers and as soon as the doc walked in I said, "Look at this."

Since I had gone through some extensive testing before and after the Acutane treatment, all that was needed was a tissue biopsy. I gave up part of an ulcer and when I went back a few days later I first heard the words, "Aphthous Stomatitis." And this is the doctor who started me on that Hibiclens/Scope concoction I describe in the Healing link on my Aphthous Stomatitis website. His name was Dr. Newton of Dermatology Associates in the Dedman Medical Center, Dallas, TX. I don't know where he is these days.

Dallas: Not until Dr. Newton. Prior to him, I think they were just guessing. Herpes was their best effort.

Science just doesn't know what's going on. RAS just is. I've moved twice since Texas and each time I had to go back into the medical community and start over. However, it's much easier now since I know what I've got and I'm well educated about it.

Currently, medical help for me comes in the form of the prescriptions I need for opiate-based topical painkillers. If a doctor can't do that for me, I do not need that doctor.

Canker Sore Relief Center: What advice would you give to dentists or doctors who may be reading this?

Dallas: One of the things that really irks me is the casual attitude stuck onto the condition by the literature available to doctors and health industry. It goes something like this: "The ulcers heal by themselves in a week or two." Well, gosh, it can't be all that bad can it?

There is usually no mention that the pain ranges from very uncomfortable to excruciating, that it's 24-7, and while one ulcer is healing, another is on the rise. That's if you're lucky enough to have only two. There is no cure, there is no treatment worth a darn, so doctors and dentists should not hesitate to treat the pain. I remember once having to collapse in tears in a doctor's office before he and his nurse realized I was hurting. This should not be necessary.

Canker Sore Relief Center: How has RAS affected your life?

Dallas: Well, I have no life, really. There is only one thing in my life and that's pain. Day in and day out, I manage my pain. I don't fall asleep; I pass out from exhaustion. I don't wake up; I get ripped out of sleep several times a night.

First thing in the morning, I care for my ulcers in a way that might get me through the workday with as little hassle as possible. It is difficult, near impossible actually, to find the privacy needed on the job site to apply painkillers, bio-adhesives or cautery agents.

On particularly bad days, the pain is so intense my face goes numb, I drool on myself and my speech slurs. ("No, boss, I didn't get drunk or stoned for lunch. I have this mouth disease, but don't worry, it's not contagious.")

When I get home, I care for my ulcers so I might eat and perhaps recover from the exhaustion. A lot of times, I just go to bed, which means I don't get out much and this doesn't do anything for my social life. Big deal: try meeting a member of the opposite sex when you have mouth ulcers. ("Well, I have mouth ulcers, but don't worry, they're not contagious. Trust me.")

And the last thing I do at night is care for my ulcers so I might get as much sleep as possible.

There is no pleasure in eating. Talking hurts. Breathing hurts. Swallowing your own saliva hurts.

Last year a dime-sized ulcer developed in the back of my mouth. It was there for three months. I have no words to describe the pain - no let up, no relief, all day, all night. I went into convulsions for the first time in my life. I was on liquids for 5 weeks and lost 18 pounds.

Now there's a scar back there that I can feel whenever I swallow. It used to be phrases like, "Lost the will to live," and "The end of one's rope," were merely expressions to me. Now I relate to them. It was a psychological hit from which I'll never recover.

I live with the specter of another ulcer like that. It's as if someone who tortured you for weeks straight might again show up at your door any day - or may not.

In the meantime, the little ulcers just keep eating away at me. So, I guess one could say that RAS has affected my life. They say stress from pain is the worst stress there is. They say RAS is stress related. There's some kind of irony in that. I wish I could laugh.

Canker Sore Relief Center: How did you go about researching potential causes and cures for your RAS?

Dallas: Well, I learned I had RAS about two years after I got "on line" about 18 years ago. There was no public Internet, but Cyberspace was rife with connectivity to bulletin board systems (BBS's). BBS's sometimes posted or allowed limited access to data that flowed on the academic Internet at the time. And there was Fidonet.

Most of what I found, though, I had already learned in libraries at universities and medical centers. Data posted online usually mirrored the printed word. However, one day I did see a BBS posting wherein a lady related that when she stopped using tarter-control toothpastes, her ulcers diminished in number and severity. Switching to a standard fluoride toothpaste did the same for me.

In 1993 I obtained a dial-in shell account at Arizona State University and began surfing the Web with Lynx. In 1994 I got a SLIP account with an ISP and loaded up Mosaic. The rest is history that's still in the making. I remember typing the word "Aphthous" into Yahoo! and Alta Vista when they were just single pages.

More and more information flowed into my system. Now just about every state and private medical and dental university and institution in the world is online. The government resources, in the US and globally, are overwhelming. I religiously search the Web at least once a week. I keep my browser history intact to avoid duplication and track link changes.

My search is Web-centric and an obsession (and occasionally I do feel guilty about not needing a library anymore). Unfortunately, it all points to the same place: no one knows anything.

Dallas: Mixing a surgical scrub (Hibiclens) and a mouthwash (Scope) and rinsing my mouth with it tops the list. Right now I'm hyped about two treatments, Debacterol and ORA5, both of which are concoctions hailing back 70 to 90 years. Debacterol is based on sulfuric acid while ORA5 is a copper sulfate/iodine mixture.

Nothing is unusual to me anymore. I'd pour concrete under my tongue if there were some clinical study showing a reduction in sores.

Canker Sore Relief Center: What, for you, has been the most effective method, technique, or medicine for either treating or preventing canker sores?

Dallas: Debacterol has offered the highest rate of combining pain relief and healing benefits of anything I've ever tried. The ORA5 is next. Zilactin is great at providing relief, but has minimal impact on healing. Lidocaine-based painkillers are the only way to go for topical pain relief.

Canker Sore Relief Center: How has the internet helped in your search for new treatments for canker sores?

Dallas: Search engines, search engines, search engines! They have gotten so good. Learn about Boolean expressions, and there's very little you can't pull down from the Web.

I learned about Debacterol and ORA5 when I received e-mail from Drs. Basara and Lee who found my Web site while doing their own Internet searches. They both sent samples for testing at no expense to me. Could this have happened without the Internet? I don't think so.

The Internet made me aware of the toothpaste ingredient SLS. The reduction in the number and intensity of sores after dumping the stuff was incredible. I am interested in finding out more about laser cauterization, the subject of my latest searches.

Canker Sore Relief Center: What made you decide to create a website devoted to RAS?

Dallas: In 1994, when there were merely 10,000 pages on the Web, I put together a home page of interesting links mainly as a starting point for the friends I convinced to get connected who then asked, "Now what do I do?" In the four years since of searching the Internet with engine after engine and Boolean entries worded to return razor-sharp finds, I never found a page devoted to Aphthous Stomatitis itself.

The next step was obvious. I would create one. There must be other people like me, and there are, as I have found out. They, like myself, must be frustrated by the lack of a starting point for research about Aphthous Stomatitis. I began planning in July of 1997 and the first page was FTP'd to my ISP's server in October. There have been over 5000 visits since February, 1998.

I was further motivated by the lack of accurate information. Quite a lot of data was just plain wrong. It was no surprise for me to read of a report in the June issue of Pediatrics that of a sampling of 60 university hospital, medical professional and health news service Web sites, 80% presented inaccurate or obsolete information.

I had put it at about 50%. Folks who visit my Web site can be confident that my links point to current and useful data. I can say that because I myself found the data to be current and useful. In short, I culled out the sites insisting a mouth ulcer can stem only from herpes, HIV or other diseases. I focused on the Web sites I bookmarked for my own use. I jazzed up the links with my experiences and opinions. So far, the response has been positive and quite rewarding.

Canker Sore Relief Center: How did you go about it?

Dallas: The usual - I use the server space my ISP provides with my run-of-the-mill account; note the tilde in my URL. The authoring tool of choice is Front Page 98. I use FTP to get the files from my system to the ISP.

Canker Sore Relief Center: What's one piece of advice you would give to sufferers of canker sores?

Dallas: Stop using SLS toothpastes.

Canker Sore Relief Center: Are there any other comments you would like to share with our viewers?

Dallas: Keep visiting my site for updates. And of course, the Canker Sore Relief Center at its link on my home page says, "When you care to click on only the best..." and I mean that.

Canker Sore Relief Center: Well thank you Dallas for your honest and heartfelt interview. I'm quite sure many of our readers can empathize with your situation. Hopefully they have learned something from your experience that will help.