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SHERI'S STORY


In June 2003, I was diagnosed with thrush, after taking the antibiotic Levequin. After numerous attempts to destroy the thrush with Nystatin, Mycelex and Diflucan, it became obvious this was not working.

This process had continued for over a year and the white lines and soreness did not heal.

In July 2005, during a dental cleaning, the hygienist became concerned about a sore that I had in my right cheek. It had been there during the last cleaning, which was 6 months before. She was concerned that a sore remained for that long in my mouth.

After trying Lidocaine/Benedryl rinse, (which was Lidocaine mixed with sugary Benedryl syrup), the mouth flared. 

At that point, I went to a periodontist.  He looked at my mouth and told me I had lichen planus.  He showed me information in a book on the symptoms and pictures.  Also, he had an episode of lichen planus while in dental school, I believe, so he was very familiar with the condition.

Later that month, I went to an ENT who made the same diagnosis independent of the periodontist.  While the periodontist had told me the condition could go into remission, the ENT was not as optimistic.

He told me I would probably always have the sores, thought they could decrease in intensity.  He had to cauterize the sore in my mouth to get it to heal.

Since then, life with OLP has been challenging at times. 

I have been an insulin dependent diabetic most of my life, so I was familiar with diets and food limitations. However, diabetes never limited my choices like OLP.

First thing I had to give up was tomatoes.  As an admitted tomato lover, this was no easy task.  Not only did fresh tomatoes go, but so did ketchup, tomato sauce in many dishes (I can use maybe half of the recipe amount) and pizza.  That last one was also very depressing.
Most pizza makers dump on the sauce very liberally, resulting in a product I could not eat.  Then I found a take-and-bake pizza place where you can have white sauce substituted for tomato or have very little sauce put on.  And pizza was back.  I still have to stay away from spicy meats, but there’s Hawaiian and veggie choices that work.

I have always been an avid gardener and over time found tomato varieties that were low acid and I can actually eat some of these fresh.  They are the older varieties, often white, yellow or orange in color. I am happy now!

Other foods that bother include most spicy items, mint, sharp crackers, which poke the sores in my mouth, and as of late, sugar.  That last one is a problem when I get hypoglycemia. 

If I can’t get the lows to stop, my mouth gets very badly broken out.  It helps to rinse after eating and if all else fails, I can usually get enough milk with chocolate flavoring down to raise the blood sugar.

This has encouraged me to always check for low blood sugar before treating using a test strip rather than guessing. It’s a really good incentive to not eat anything sweet unless I have no choice.

My husband has gotten used to me starting to eat something and then stopping and saying “This won’t work”.  He’s really patient with the whole thing.  At first, I would get frustrated when I would buy food I like, and then not be able to eat it.  Often, I had to throw it away.  That bothered me at lot. 

Now I just know that sometimes, no matter how well I plan, things are not going to work out and that I just need to accept that some food items will end up composted instead of eaten.  It’s nothing I can control.

People ask what the sores feel like—I usually say it feels like every morning one starts out with a really hot cup of coffee, one takes a big swig of the coffee and burns the inside of their mouth. 

This is the erosive state, which my OLP seems to stay in much of the time.  Sometimes, the sores are similar in feeling to canker sores. It varies.

Since there is no cure for OLP (as with most auto-immune diseases), one can only manage the symptoms.  There are steroid creams that help. Local anesthetics, such as Lidocaine, are used sometimes, but my ENT is not fond of using lidocaine, so I don’t do that. 

Over time, I have developed a self-care routine using OTC and herbal medications.  I use three or four different mouth washes (Act: children’s flavor, Listerine, Biotene and an herbal one with aloe and tea tree oil), toothpaste without mint (prescription fluoride berry flavored and Biotene toothpaste).

I have recently added aloe gel (after reading on this blog about the studies that were done) and am trying a mouthwash and toothpaste.  It’s necessary to keep the routine at all times.  If I start slacking off, the sores get bigger and nastier.

The reason for the over the counter routine is I am allergic to a large number of medications and I don’t tolerate most medications well in general. 

So for as long as the condition can be held at bay with the OTC items, I use those. Using OTC items requires that you pay close attention to what works and what makes things worse, which can be challenging.
However, with OLP, one usually has to make a lot of mental (or physical) notes because there are so many things that affect the condition. Many doctors and studies tell us that stress affects OLP.  I am not sure on this in my case. 

A physical stress-especially problems with teeth and low blood sugars—definitely do.  Other stress is not so clear.  The sores can erupt when I am happy and things are going very well.  They can clear when I’m miserable and everything is going wrong.  I personally have not seen the connection.

One challenge is what to eat when my mouth is fully erupted. Most of the time I eat “white” food (a term I borrowed from the TV show “Numbers”). That’s Cream of Wheat, processed oatmeal (the old fashioned can be too chewy at that point), cottage cheese, bread lightly toasted, cream soup or soup with mostly vegetables and little meat, ice cream (not a good choice if you gain weight easily), Mac’n’Cheese, etc.  Also, crackers or bread soaked in milk works.  It’s kind of like eating like a toddler. 

In addition, I tend to cut my food into very small pieces so chewing is easier and there are fewer sharp edges to poke the sores.  At times, I really do feel like I’m eating like a two-year-old.

This entire routine can at a times be very challenging.  I try to maintain a good attitude, learning to just yelp when things hurt and accepting that foods I want will not always be something I can eat.  Honestly, if I could cure one disease I have, OLP would be the one.  However, for now there is no cure so I just deal with it.


Sheri Kimbrough

Wyoming



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