Although I have no problems abstaining from my food allergens, because those cause obvious painful reactions, avoiding or reducing other foods to 'eat healthier' can make me feel deprived, overeat and occasionally binge. I didn't realize how much that kind of 'unintentional' restriction influenced my overeating until recently.
I thought I began to overeat because I felt so frustrated and hopeless about coping with yet another bacterial infection. However, after I began to overeat more often and eventually binged, I considered exactly what and why I had restricted and whether I would be 'healthier' by just eating small amounts of 'unhealthy' foods, rather than abstaining and then overeating 'healthy foods' or occasionally bingeing on what I had considered 'unhealthy'.
Specifically I decided to eat less sweets after I developed an upper respiratory infection while I was still treating an intestinal bacterial infection. Initially I feared the achromobacter (intestinal bacteria) had spread to my respiratory system, because patients with cystic fibrosis often develop achromobacter respiratory infections. I had read that consuming sugar lowers immunity and decided to cut waaaay back on sweets. However, I had not actually noticed that eating sweets made me catch more colds or anything else. I was just desperate to recover from whatever I had and naively believed what I read. I also binged one day when I was feeling really physically crappy and obviously very deprived of favorite foods.
At that point, I realized that I had binged, because I had restricted certain foods, not just because I felt stressed. When I don't restrict unnecessarily, I just don't have any 'binge foods'. No matter how stressed I feel, I don't binge. So I decided to restock my favorite foods (ala Overcoming Overeating) and eat those regularly in modest portions. I also took more zinc and consumed more oranges (with Vitamin C) which I craved.
Within 2 days I completely recovered from the cold symptoms, that seemed to hang on for weeks, even though I felt my worst 4 days ago. So I could conclude that eating sugar raises immunity, because my cold quickly disappeared after eating frosted valentine cookies and agave sweeted ice cream for the past 2 days. However, I suspect I just became more aware of my cravings, when I ate what I wanted. So I also ate exactly what I needed to recover from my cold (like oranges, green and yellow vegies, etc.), when I decided to also 'feed' my sweets cravings.
Thursday, February 18, 2010
Wednesday, February 10, 2010
Springlike Winter Break
While the rest of the country battled snow and wintry weather, Seattle had several days of warm sunny weather, which ended yesterday. However, during that warm stretch, my husband prepared our vegie garden beds. He did soil tests for nutrient levels and added nutrients which were deficient. Then I planted sugar snap peas, carrots, lettuce, onions and kale. I also started some broccoli in indoor pots. So I'll transplant them after they become sturdy little plants. I'm so pleased that we actually planted our cold weather vegies in February, rather than late April, this year.
I noticed the brocolli seedlings are already sprouting in their indoor pots. However, I plan to closely watch the outdoor vegie seedlings, because our local feathered friends often pull up the little sprouts as they appear. The birds don't really eat the vegie sprouts. They just like to peck at things. I actually suspect the pigeons, rather than the songbirds, are the pecking culprits. So we will cover out little vegie sprouts with wire net as soon as they appear. Hopefully we can prevent the peck and pull birds from destroying our garden vegies.
As often happens in Seattle, cold rainy weather quickly replaced the warm, springlike weather. So I didn't water any of our seedlings, because I knew the cold, rainy weather would soon return. Unfortunately, getting cold and wet a few times, just exacerbated my cold symptoms. So today I have a full blown cold. Fortunately, I finished caprylic acid treatment and began high probiotic treatment before I got upper respiratory discomfort.
I noticed the brocolli seedlings are already sprouting in their indoor pots. However, I plan to closely watch the outdoor vegie seedlings, because our local feathered friends often pull up the little sprouts as they appear. The birds don't really eat the vegie sprouts. They just like to peck at things. I actually suspect the pigeons, rather than the songbirds, are the pecking culprits. So we will cover out little vegie sprouts with wire net as soon as they appear. Hopefully we can prevent the peck and pull birds from destroying our garden vegies.
As often happens in Seattle, cold rainy weather quickly replaced the warm, springlike weather. So I didn't water any of our seedlings, because I knew the cold, rainy weather would soon return. Unfortunately, getting cold and wet a few times, just exacerbated my cold symptoms. So today I have a full blown cold. Fortunately, I finished caprylic acid treatment and began high probiotic treatment before I got upper respiratory discomfort.
Tuesday, February 9, 2010
Catch 22 Probiotic Treatment
I won't know whether taking capyrlic acid successfully eliminated achromobacter, without taking another $350 stool test, which is not covered by my HMO policy. So I plan to just see how I feel after the side effects of the caprylic acid wear off. Currently I'm taking a 7 day course of high dose (127 billion per dose) probiotics to replace whatever the CA destroyed in my gut and hopefully protect me against other tiny amounts of bad bacteria overwhelming the good bacteria (which would cause another infection).
I'm in a catch 22 situation here. If I overtreat achromobacter by taking CA too long, I can easily develop an overgrowth from another bacteria. My pattern has been one gut infection after another for the past 4 years. Actually that often happens to other people with any treatment. People often get c-diff after being treated with antibiotics for other problems. However, if I undertreat the achromobacter, I obviously still have the infection and symptoms.
The stool test I mentioned requires that I go off all probiotics, digestive enzymes (I take betaine hydrochloride to replenish my stomach acid) and other meds for 3 days before the test. Then I have to wait 3 weeks for the test results. So whatever I have in my gut on the day of the test obviously changes positively or negatively over the next 3 weeks. If I have an infection, it gets worse. If I have no pathogenic bacteria or parasites, I could actually have one by the time I get those test results.
So I need to reassess how I feel after taking the high dose probiotics. Then I'll consider that expensive retest. Taking high dose probiotics can only help, whether or not I still have achromobacter. Some naturopaths treat 'bad gut bugs' by crowding them out with good bacteria from probiotics. I took probiotics while taking an antibiotic for achromobacter. So hopefully, I didn't leave much room for new villians. Nevertheless, adding many more good guy bacteria could improve whatever is going on in my gut.
Right now I feel pretty good. I have no headaches, cramping pain, bloating, gas and finally no nausea. So maybe this time I'll stay healthy for awhile.
I'm in a catch 22 situation here. If I overtreat achromobacter by taking CA too long, I can easily develop an overgrowth from another bacteria. My pattern has been one gut infection after another for the past 4 years. Actually that often happens to other people with any treatment. People often get c-diff after being treated with antibiotics for other problems. However, if I undertreat the achromobacter, I obviously still have the infection and symptoms.
The stool test I mentioned requires that I go off all probiotics, digestive enzymes (I take betaine hydrochloride to replenish my stomach acid) and other meds for 3 days before the test. Then I have to wait 3 weeks for the test results. So whatever I have in my gut on the day of the test obviously changes positively or negatively over the next 3 weeks. If I have an infection, it gets worse. If I have no pathogenic bacteria or parasites, I could actually have one by the time I get those test results.
So I need to reassess how I feel after taking the high dose probiotics. Then I'll consider that expensive retest. Taking high dose probiotics can only help, whether or not I still have achromobacter. Some naturopaths treat 'bad gut bugs' by crowding them out with good bacteria from probiotics. I took probiotics while taking an antibiotic for achromobacter. So hopefully, I didn't leave much room for new villians. Nevertheless, adding many more good guy bacteria could improve whatever is going on in my gut.
Right now I feel pretty good. I have no headaches, cramping pain, bloating, gas and finally no nausea. So maybe this time I'll stay healthy for awhile.
Friday, February 5, 2010
Lonely Patient Book
Just before I received my last lab test results, I began reading a book entitled "The Lonely Patient" by Michael Stein, MD. The author his patients who typically experience betrayal, terror, loss and loneliness during their illnesses. Although my current gastrointestinal bacterial infection (from Achromobacter) does not seem to recur, I still experienced those familiar emotions of body betrayal, terror that I would get much sicker or never really recover, loss of freedom, physical comfort and confidence in my body, and above all loneliness, because nobody else experiences exactly what I feel physically or emotionally.
I realized after reading "The Lonely Patient" that my illnesses have made me feel more vulnerable or unsafe in my own body. Those unsafe feelings take me back to my childhood, when I didn't feel safe in my own family (because my mom physically and emotionally abused me). The author of "Lonely Patient" said that most children blame themselves for whatever happens. My mother continually told me 'You brought it on yourself', no matter what happened to me. So I felt guilty as well as scared when I felt ill. Like most children, as an adult, I don't want to blame myself. I want to blame anyone else but myself.
Rather than blame myself, I feel angry about my doctor's unsuccessful attempts to promptly diagnose and treat my many intestinal infections. I want to blame my doctor for all those c-diff recurrences. When I had symptoms of undiagnosed cryptosporidium AND c-diff, my doctor discounted my symptoms as 'stress', rather than suggest testing. Only at my insistence, did he agree to test me. I'm angry that he didn't initially aggressively treat c-diff. So I had many recurrences of that bacteria (from its spores). That eroded any trust I might have in my doctor, whom I trust more than traditional doctors. Accordingly, I have doubted and questioned everything he suggested to treat my current infection.
Although I read online articles about treating Achromobacter with antibiotics, emories of unsuccessful treatment and recurrences from C-diff make me feel hopeless about eliminating Achromobacter. In my head, I know achromobacter doesn't have spores, won't 'morph' into new bacteria and recur after multiple treatments. However, I'll believe caprylic acid can eliminate achromobacter when/if I finish the suggested treatment and have no more painful symptoms. However, I first need to endure withdrawal from caprylic acid, which could cause more nausea and cramping pain.
I believe treating this bacteria is a lose/lose situation. I feel crappy while I take caprylic acid and I'll feel crappy when I finish the CA and still have the bacteria. When I asked my doc how I'd know when the bacteria was gone, he just said only another ($350) stool test would tell me for sure. Oh great. So I'm supposed to go through uncomfortable CA treatment and maybe still have achromobacter. That reminds me of my first treatment experience for c-diff, when my doc prescribed flagyl, which made me feel horrible for 10 days. After I stopped taking the flagyl the c-diff symptoms returned. Rather than try a better antibiotic (vancomycin) at that point, my doc prescribed another round of flagyl. That was insane ... doing the same thing and hoping for different results. I had recurrences after I took vancomycin, but I didn't use the same treatment method after each recurrence.
I successfully treated 2 previous bacteria (klebsiella and enterobacter cloacae) with caprylic acid. However my c-diff treatment nightmare makes me doubt that I will soon recover from achromobacter. Worse yet maybe I will recover from achromobacter, and a new bacteria/parasite/fungus will overwhelm my good bacteria. I'm taking daily high doses of probiotics to avoid leaving huge gaps in my bacterial balance as the CA kills off the achromobacter, where new bugs can take hold. However, I still have those fears, CA side effect symptoms and unpredictable diarrhea.
So I daily experience the whole range of emotions, including body betrayal, terror (of never ending illness), loss of confidence in my body and freedom in my life, and loneliness (because I don't know anyone who has experienced celiac disease, 7 food allergies and then one gut infection after another for 5 years). If I had one of those well-known diseases, like cancer, heart disease, etc., people might be more understanding and sympathetic. However, I've tried to eat well, exercise daily and avoid other unhealthy substances (alcohol, caffeine, tobacco, recreational drugs, etc.) so that I wouldn't develop those 'well-known' diseases. So here I am, looking trim and healthy, but feeling crappy. Yet nobody suspects I'm ill, because I don't 'look' ill.
I realized after reading "The Lonely Patient" that my illnesses have made me feel more vulnerable or unsafe in my own body. Those unsafe feelings take me back to my childhood, when I didn't feel safe in my own family (because my mom physically and emotionally abused me). The author of "Lonely Patient" said that most children blame themselves for whatever happens. My mother continually told me 'You brought it on yourself', no matter what happened to me. So I felt guilty as well as scared when I felt ill. Like most children, as an adult, I don't want to blame myself. I want to blame anyone else but myself.
Rather than blame myself, I feel angry about my doctor's unsuccessful attempts to promptly diagnose and treat my many intestinal infections. I want to blame my doctor for all those c-diff recurrences. When I had symptoms of undiagnosed cryptosporidium AND c-diff, my doctor discounted my symptoms as 'stress', rather than suggest testing. Only at my insistence, did he agree to test me. I'm angry that he didn't initially aggressively treat c-diff. So I had many recurrences of that bacteria (from its spores). That eroded any trust I might have in my doctor, whom I trust more than traditional doctors. Accordingly, I have doubted and questioned everything he suggested to treat my current infection.
Although I read online articles about treating Achromobacter with antibiotics, emories of unsuccessful treatment and recurrences from C-diff make me feel hopeless about eliminating Achromobacter. In my head, I know achromobacter doesn't have spores, won't 'morph' into new bacteria and recur after multiple treatments. However, I'll believe caprylic acid can eliminate achromobacter when/if I finish the suggested treatment and have no more painful symptoms. However, I first need to endure withdrawal from caprylic acid, which could cause more nausea and cramping pain.
I believe treating this bacteria is a lose/lose situation. I feel crappy while I take caprylic acid and I'll feel crappy when I finish the CA and still have the bacteria. When I asked my doc how I'd know when the bacteria was gone, he just said only another ($350) stool test would tell me for sure. Oh great. So I'm supposed to go through uncomfortable CA treatment and maybe still have achromobacter. That reminds me of my first treatment experience for c-diff, when my doc prescribed flagyl, which made me feel horrible for 10 days. After I stopped taking the flagyl the c-diff symptoms returned. Rather than try a better antibiotic (vancomycin) at that point, my doc prescribed another round of flagyl. That was insane ... doing the same thing and hoping for different results. I had recurrences after I took vancomycin, but I didn't use the same treatment method after each recurrence.
I successfully treated 2 previous bacteria (klebsiella and enterobacter cloacae) with caprylic acid. However my c-diff treatment nightmare makes me doubt that I will soon recover from achromobacter. Worse yet maybe I will recover from achromobacter, and a new bacteria/parasite/fungus will overwhelm my good bacteria. I'm taking daily high doses of probiotics to avoid leaving huge gaps in my bacterial balance as the CA kills off the achromobacter, where new bugs can take hold. However, I still have those fears, CA side effect symptoms and unpredictable diarrhea.
So I daily experience the whole range of emotions, including body betrayal, terror (of never ending illness), loss of confidence in my body and freedom in my life, and loneliness (because I don't know anyone who has experienced celiac disease, 7 food allergies and then one gut infection after another for 5 years). If I had one of those well-known diseases, like cancer, heart disease, etc., people might be more understanding and sympathetic. However, I've tried to eat well, exercise daily and avoid other unhealthy substances (alcohol, caffeine, tobacco, recreational drugs, etc.) so that I wouldn't develop those 'well-known' diseases. So here I am, looking trim and healthy, but feeling crappy. Yet nobody suspects I'm ill, because I don't 'look' ill.
Birthday Update
After my prebirthday pity party post, I want to describe how we actually celebrated my birthday on Wednesday. By then I had realized and processed the thoughts which influenced my previous frustration and hopelessness. So I actually wanted to celebrate on my birthday. My husband stayed home from work to celebrate my day. He surprised me with a bouquet of tulips in various shades of reds and oranges, my favorite colors. On the kitchen counter he place a bowl of red grapes, one of my favorite fruits, a bowl of blueberries, which I often put on my breakfast muffin with peanut butter, 2 presents and a card. So I was pleasantly surprised and ate about half the grapes immediately LOL.
Per usual, Seattle weather surprised us. Although a dry cloudy day was predicted, heavy rain began that morning and continued all day long. So we had cold rainy weather all day. At one point I talked to my husband bout taking a 'rain check' until I felt physically better (I had some cold symptoms as well as my gut symptoms). However, I know I can't rely on Seattle weather or my physical wellbeing or freedom from painful symptoms from one day to the next. So we decided to make the best of the day.
We took the bus into Seattle. (We both have cars, but I prefer the bus during the day. So we can talk and snuggle during the ride.) We did some hurried shopping at Banana Republic (for which we had 3 discount coupons) and H&M, my alltime favorite store. Then we went to a nearby theatre and saw "The Princess and the Frog". That movie was the highlight of my day. I enjoyed the characters, the romance, the comedy, the color, the songs, the dancing and that outstanding Disney classic story. After the movie we returned to shopping and I selected a few garments. We had planned to stop at a local organic grocery to pick up dinner from the deli. However, I was too cold and tired to get off the bus early. So we went home and I microwaved some leftovers which appealed to me. We also enjoyed some of our homemade (vegan) pumpkin ice cream (made from one of our Halloween pumpkins).
After dinner I returned a birthday phone call from a friend and talked for at least an hour before going to bed. All in all I was glad we decided to celebrate on my actual birthday. Besides Valentine's Day will occur in another 10 days. So we can do more celebrating on that day.
Per usual, Seattle weather surprised us. Although a dry cloudy day was predicted, heavy rain began that morning and continued all day long. So we had cold rainy weather all day. At one point I talked to my husband bout taking a 'rain check' until I felt physically better (I had some cold symptoms as well as my gut symptoms). However, I know I can't rely on Seattle weather or my physical wellbeing or freedom from painful symptoms from one day to the next. So we decided to make the best of the day.
We took the bus into Seattle. (We both have cars, but I prefer the bus during the day. So we can talk and snuggle during the ride.) We did some hurried shopping at Banana Republic (for which we had 3 discount coupons) and H&M, my alltime favorite store. Then we went to a nearby theatre and saw "The Princess and the Frog". That movie was the highlight of my day. I enjoyed the characters, the romance, the comedy, the color, the songs, the dancing and that outstanding Disney classic story. After the movie we returned to shopping and I selected a few garments. We had planned to stop at a local organic grocery to pick up dinner from the deli. However, I was too cold and tired to get off the bus early. So we went home and I microwaved some leftovers which appealed to me. We also enjoyed some of our homemade (vegan) pumpkin ice cream (made from one of our Halloween pumpkins).
After dinner I returned a birthday phone call from a friend and talked for at least an hour before going to bed. All in all I was glad we decided to celebrate on my actual birthday. Besides Valentine's Day will occur in another 10 days. So we can do more celebrating on that day.
Tuesday, February 2, 2010
Birthday/Pity Party
Tomorrow is my birthday. Instead of having a birthday party, I may have a pity party. I don't want cake and ice cream, because I easily reflux very sweet foods, even if I have allergen free cake and ice cream. The caprylic acid, which I take for my current bacterial infection, makes me more susceptible to reflux. I don't want to shop for new clothes, which I usually love, because caprylic acid causes bloating and cramping gut pain. So I will won't feel comfortable in anything except a burlap bag or maybe maternity clothes. I don't want to attend a special event for my birthday, because I can't predict how much time I need to spend in the bathroom. I don't want to go out to eat, because (1) I have to negotiate at least a day in advance with chefs, managers and waiters to provide an allergy free meal so that I don't get even more pain from allergen reactions; (2) I hurt after I eat almost anything; and (3) I have to take my caprylic acid and probiotics with meals, which make me bloated, gassy and embarrassed in public.
If I could have anything for my birthday, I'd like a new, healthy gastrointestinal system which doesn't have celiac disease, 7 food allergens, sensitivities to foods which cause reflux (like caffeine, chocolate, alcohol, onions, sugar, fats, tomato based foods and citrus fruit), sensitivities to artificial sweeteners, and susceptibilty to one gut infection (bacterial or parasitic or yeast) after another. I'd like one day when I could eat anything without experiencing bloat, gas, cramping pain or reflux that makes me want to give in and throw up. I'd like to just eat when I feel hungry, enjoy the food until I feel full and stop eating and then not feel anything in my body until the next time I feel hungry. I'd like a day when I don't feel anything in my intestines until I have to 'go' and then nothing after I go until I need to 'go' again. I'd like to experience normal, healthy digestion, even if I have to avoid food allergens, for just one day.
I'd like to invite anyone who reads this to my birthday/pity party. At this point I don't know whether I will celebrate my birthday or wallow in self-pity, because I'm soooo tired of gastrointestinal problems despite abstaining from food allergens and treating gut infections for the past 5 years. The good news is that I finally learned, after struggling with 'eating' problems for over 35 years, that I didn't have anorexia, when I delayed eating to avoid pain. I didn't have bulimia, when I threw up, after some foods caused horrible reflux and others just caused pain. I didn't have a binge eating disorder, when I binged on all the foods that tasted good but caused painful digestive problems. Maybe I can celebrate the fact that I have a gastrointestinal disorder, rather than an eating disorder.
If I could have anything for my birthday, I'd like a new, healthy gastrointestinal system which doesn't have celiac disease, 7 food allergens, sensitivities to foods which cause reflux (like caffeine, chocolate, alcohol, onions, sugar, fats, tomato based foods and citrus fruit), sensitivities to artificial sweeteners, and susceptibilty to one gut infection (bacterial or parasitic or yeast) after another. I'd like one day when I could eat anything without experiencing bloat, gas, cramping pain or reflux that makes me want to give in and throw up. I'd like to just eat when I feel hungry, enjoy the food until I feel full and stop eating and then not feel anything in my body until the next time I feel hungry. I'd like a day when I don't feel anything in my intestines until I have to 'go' and then nothing after I go until I need to 'go' again. I'd like to experience normal, healthy digestion, even if I have to avoid food allergens, for just one day.
I'd like to invite anyone who reads this to my birthday/pity party. At this point I don't know whether I will celebrate my birthday or wallow in self-pity, because I'm soooo tired of gastrointestinal problems despite abstaining from food allergens and treating gut infections for the past 5 years. The good news is that I finally learned, after struggling with 'eating' problems for over 35 years, that I didn't have anorexia, when I delayed eating to avoid pain. I didn't have bulimia, when I threw up, after some foods caused horrible reflux and others just caused pain. I didn't have a binge eating disorder, when I binged on all the foods that tasted good but caused painful digestive problems. Maybe I can celebrate the fact that I have a gastrointestinal disorder, rather than an eating disorder.
Monday, February 1, 2010
Caprylic Acid Side Effects
Almost every online article I read states that caprylic acid side effects include: mild to very severe abdominal pain, nausea, vomiting, constipation and diarrhea. I had nausea, a headache and abdominal cramps the first 2 days. The nausea and headache disappeared after 2 days. However, I experienced another headache on the 6th day of CA treatment. I suspect the headache was related to lack of sleep. Nevertheless CA may have influenced that 'lack of sleep, because: (1) the abdominal pain makes me feel like I still have to 'go' before bed (and often do) and (2) those abdominal cramps wake me up early in the morning. Then I can't easily get back to sleep. So I get up feeling less than refreshed. I haven't had constipation, but varied from normal stools to diarrhea during the past week of taking CA. However, I have the abdominal cramps every day.
Nevertheless, I notice that I have an afternoon painfree period. Since I take CA capsules with breakfast and dinner, I suspect my abdominal pain is a CA side effect. My dilemma is: How do I know when the caprylic acid has completely eliminated the achromobacter? I suppose I could stop taking CA after the recommended 2 week period and just see whether the pain goes away. However, I don't know how long, after discontinuing CA, I will experience CA related gut pain. I may not know for sure whether continual abdominal pain means I still have achromobacter or I still have CA related side effects.
So I emailed my doc to ask how I would know whether CA eliminated the achromobacter. After I hit 'send', I realized that brief painfree periods between CA doses probably means intestinal cramps should end when the CA ends. If I still have gut pain, I either (1) still have achromobacter or (2) acquired a new bacteria. SIGH However, my doc said that the only way I'd really know whether the CA worked would be to take another DNA Microbial stool test. Just what I need ... another $350 test, which my HMO doesn't cover. So I emailed my doc to say that when the lab gives discounts to patients, (like me) who regularly buy their tests, I will test more frequently. In the meantime I need a less expensive way to determine whether CA worked.
Nevertheless, I notice that I have an afternoon painfree period. Since I take CA capsules with breakfast and dinner, I suspect my abdominal pain is a CA side effect. My dilemma is: How do I know when the caprylic acid has completely eliminated the achromobacter? I suppose I could stop taking CA after the recommended 2 week period and just see whether the pain goes away. However, I don't know how long, after discontinuing CA, I will experience CA related gut pain. I may not know for sure whether continual abdominal pain means I still have achromobacter or I still have CA related side effects.
So I emailed my doc to ask how I would know whether CA eliminated the achromobacter. After I hit 'send', I realized that brief painfree periods between CA doses probably means intestinal cramps should end when the CA ends. If I still have gut pain, I either (1) still have achromobacter or (2) acquired a new bacteria. SIGH However, my doc said that the only way I'd really know whether the CA worked would be to take another DNA Microbial stool test. Just what I need ... another $350 test, which my HMO doesn't cover. So I emailed my doc to say that when the lab gives discounts to patients, (like me) who regularly buy their tests, I will test more frequently. In the meantime I need a less expensive way to determine whether CA worked.
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