Food

One of the most troublesome aspects of having BMS is the limitations on foods I can eat. I can't eat peppers, which pretty much eliminates two of my favorite cuisines, Mexican and Indian. Acidic foods like tomatoes, citrus fruit and vinegar are also out, which precludes a lot of Italian foods as well as my favorite salad dressing, vinaigrette. Also anything hard and crunchy is difficult, and grainy textures like cornbread bother me a lot. I can eat chips in very small bites, being very careful not to let the edges of the pieces hurt my mouth. My doctor also thinks I might have acid reflux (which can be a cause of BMS, although the oral pathologist I saw didn't think that was so in my case), so he told me to cut back on chocolate. I can eat meat if it's tender enough; I've been eating more fish and chicken than red meat because it just seems easier.

So that basically leaves me with soft, bland foods. Pasta, oatmeal, eggs, all kinds of dairy: yoghurt, cheese, cottage cheese, milk, ice cream. (Fortunately I live in Texas where Blue Bell Homemade Vanilla is readily available.) Potatoes, rice, bread, pudding, Fruit: peaches (no fresh local ones at this time of year, though), bananas, applesauce, ripe pears. I've really missed good, juicy naval oranges and juice. I think grapes and plums would be too acidic also. Vegetables are OK as long as they're cook soft enough.

I'm trying to think of creative ways to make some of these foods more flavorful. Chicken & dumplings, homemade chicken noodle soup, and cheese and guacamole omelets are some of the best things I've come up with lately. I'll add to this list later and also post some more recipes.

Oral Surgery

Friday I had a second oral surgery, to implant the titanium post that my permanent tooth will be attached to. The surgery didn't seem as bad as the extraction surgery; it hasn't hurt as much and I stopped taking my prescription painkiller, Darvocet, on Saturday and just took over-the-counter painkiller instead. I went back to work today and was a little tired by about 2:00 p.m., but not like last time.

I went to my GP yesterday and told him I couldn't see any effect from the Cymbalta. He put me back on nortriptylene and prescribed neurontin, which is similar to the Lyrica I was taking previously. His nurse practitioner suggested I mix Lydocaine with Mylanta and swish it in my mouth as a topical painkiller. Bottom line, as I see it: they don't know what to do.

The doctor also told me I shouldn't continue taking Amoxycillin (antibiotic), which I started Thursday due to the surgery (to prevent possible infection), since it can cause oral candidiasis. I called my oral surgeon and he prescribed a different antibiotic. The warnings and side effects of the second one sounded so scary that I called him back today and told his assistant that I didn't want to take it, and he said I could stop taking anything as long as I didn't have any sign of infection.

I read somewhere (the Mayo Clininc's website?) that treatment of BMS can involve a team of doctors and dentists. I wish somebody was coordinating my team.

Oral Candidiasis

Last week the roof of my mouth was extremely sore and red and my tongue was coated white. I called my GP, who is treating me for BMS, and without seeing me he called in a prescription for Mycelex. This turns out to be an antifungal lozenge used to treat oral candidiasis (an oral yeast infection), which is listed as one of the causes of BMS. Interestingly, my regular dentist, oral surgeon and oral pathologist all said that I did not have any signs of oral candidiasis. I think I did, though, but it wasn't apparent at the times I saw them. After taking the Mycelex for 5 days (the prescribed length of time), the roof of my mouth improved drastically and the white coating on my tongue went away. The burning mouth symptoms don't seem affected, however.

I have a followup visit with my doctor on Monday and intend to ask him if he thinks continuation of the Mycelex would help my BMS. I don't know if taking it for an extended length of time is advisable, though.

I have also started taking acidopholous, even though what I've read seems to indicate that it's not really effective.

Recipe - Sancocho

Here's my version of a tasty Panamanian soup that is easy to eat and not too spicy. I get yuca (a large root vegetable) and plantains at Central Market in Austin; Whole Foods Market probably carries them also. The plantains should be a little on the green side--they get sweeter as they ripen. They should not be sweet for this soup.

Sancocho

Ingredients:
5 chicken leg quarters
1 large onion
8 garlic cloves, chopped
3 quarts cold water
1 lb. yuca root, peeled and cut into chunks (substitute potatoes if yuca is unavailable)
2 plantains, not too ripe
1 tbsp. salt
½ c. cilantro, chopped, plus extra for garnish

Place the chicken in the water with the onion, garlic, and salt and cook slowly until tender. Cut the yuca and plantains in 1½-inch pieces and add. Continue cooking until the vegetables are tender. Season to taste. To thicken soup, remove some of the plantain and puree with a little broth until smooth; return to pot and mix in.

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Burning Mouth Syndrome

I'm starting this blog to create a forum for exchanging comments, information and resources for people suffering from Burning Mouth Syndrome. I was diagnosed with the condition in September, 2006. So far attempts to treat it have been unsuccessful. My symptoms include burning in the front part of my mouth, an extremely sore roof of the mouth, and a persistent sore throat. It's not so bad in the morning, but gets worse throughout the day.

My story started in July, 2006, following oral surgery for extraction of a tooth. A week after the surgery I was feeling better but I realized that it hurt to eat canned tuna fish. I suspected it was a result of using the harsh mouthwash, Peridex, that was prescribed for use for three weeks after my surgery, so I asked my oral surgeon if I could stop using it. He said yes, I could use warm salt water instead.

But the pain persisted, and several visits to the oral surgeon and regular dentist didn't help. I found information about Burning Mouth Syndrome on the Internet, including something from the American Academy of Oral and Maxillofacial Pathology (www.aaomp.org). They sent me a list of oral pathologists in Texas and I was able to get an appointment with Dr. Anna Jones at the University of Texas Health Sciences Center Faculty Practice Clinic (http://dental.uthscsa.edu/patientcare/faculty.html) in San Antonio, the closest city with oral pathologists to my home in Austin. They seem to be primarily associated with dental schools.

Dr. Jones said I had a classic case of burning mouth syndrome. She said it is primarily caused by anxiety and depression and suggested that I see a psychiatrist. I immediately resisted that idea, saying "I'm not depressed." But I realized that I had been stressing incredibly about things that turned out to be not worth worrying about, like my oral surgery, work, and other unrelated issues. She also suggested that I see a gastroenterologist as acid reflux could be causing my sore throat. She prescribed an oral rinse, dexamethasone, saying it was not a permanent solution but might help ease the inflammation.

A few weeks of the dexamethasone didn't help so I decided to see my GP instead of going to a psychiatrist. As I understand it, these days most psychiatrists just prescribe medication, and my doctor can do that. He put me on nortriptylene (an anti-depressant) and Lyrica (an anti-inflammatory? I can't remember now) and told me to come back in a month.

None of these medications seemed to be helping so I went back to the doctor a week ago and he switched me to Cymbalta, which is used to treat both depression and pain. I don't think I've been taking it long enough for it to kick in yet and haven't reached the maximum dosage, but my mouth feels worse than it did before. Maybe the other meds were helping after all, in such tiny increments that I didn't notice. However, I really think it had started feeling worse before I changed prescriptions, so maybe it just goes through cycles. I'm going to stick with the Cymbalta long enough to see if it makes a difference.

This is my first post--later I will write about some of the emotional ups and downs I've been through. I welcome your contributions to my blog. If anyone has received help for this condition, I would like to hear about it. I would also like to start an exchange of information. (Where do you get original flavor Biotene toothpaste? Not the original fresh mint flavor.) And I'd like to start sharing recipes that those of us with BMS can eat -- soft, mild foods that taste good! I'm a native Texan, and I'm suffering severe withdrawal from Mexican food. I plan to post some recipes later, too.

I look forward to hearing from you.

Angela Winston