Monday, February 22, 2010

Acid Reflux???

I want to post an update for the one?? reader of this blog, before I decide to delete this blog, as I have deleted 6 previous blogs, after I became tired of blogging. So here's the latest on the persistent cough/fatigue symptoms:

I awoke after 9 hours of sleep feeling really good on the morning of my doctor appointment. So I didn't think I had a cold or flu or anything to exacerbate my cough. I almost cancelled my appointment with my doc. However, I had suffered that tickling cough for over 3 months and wanted to consult my doctor about those symptoms.

During my walk to the clinic, I again experienced acid reflux, even though I had not eaten foods that exacerbate reflux. However I did take my usual HCl (betaine hydrochloride) digestive supplement and zinc (to increase immune response to fight a cold) with my lunch. Then I realized that the reflux might cause the cough. When I first began to take HCl several years ago, that eliminated my reflux and really helped digestion. However, while I was taking vancomycin HCl for c-diff, I experienced more problems with reflux and tried to reduce the amount of HCl I took, because the vanco also contained HCl. Maybe my digestive difficulties were more related to having gut infections than depleted HCl in my stomach. I did seem to have one gut infection after another for several years. My husband thought that maybe taking HCl for a few years 'primed' my stomach to make enough of its own. Now HCl seems to be doing more harm than good now.

At my appointment, my doc examined my throat and listened to my lungs while breathing. She didn't notice anything. Then she recommended a chest x-ray. She also asked me about reflux. So I shared what I just wrote about my HCl experience. She said that acid reflux would cause the throat tickle and cough. If I refluxed a bit into my bronchial tubes, that would cause the asthma like symptoms I had (difficulty taking deep breaths without coughing and coughing more when breathing cold air). My doc and I both agreed that I should stop taking HCl. I'm tired of having to take digestive enzymes every time I eat proteins or fats. I would love to be able to eat whenever I'm hungry, whatever satisfies me, without worrying about digestion. Maybe getting rid of all those gut bugs while taking oodles of probiotics finally resolved my digestive problems. So now I don't need digestive supplements.

The lung x-ray was clear (no signs of tb or pneumonia). However, I still have the throat tickle and cough, but I suspect few more days without acid supplements reflux will heal my throat. On my way to my doc's clinic, when I realized the reflux irritated my throat and caused the cough, I worried about getting esophageal cancer from reflux. Thank God this cough to made me stop taking HCl to avoid, while I also avoid foods which weaken the lower esophageal valve and cause reflux.

After a week of no HCl supplements, I still have a slight throat tickle and cough. I still seem to need 8-9 hours of sleep. However, I noticed decreased tickle and cough. So I will continue eating meals without digestive supplements for awhile.

I seem to have gone full circle now ... from taking acid blocking drugs for 'gastritis' to abstaining from those drugs because I suspected overeating caused my reflux to digestive difficulties before my CD and food allergies were diagnosed ... to taking enzymes to assist digestion to taking betaine hydrochloride capsules to supplement digestion of meats and fats ... to eliminating digestive enzymes to avoid acid reflux. Maybe the betaine hydrochloride 'primed' my stomach to produce more of its own acid. However, I've also read in Jonathon Wright's "Why Stomach Acid is Good for You" that certain foods, not too much (or even too little acid) can cause the lower esophageal valve to relax and let acid reflux into the esophagus. Nevertheless, even abstaining from those foods won't help if I take more acid than I actually need. So I'll focus on eating no more than I need to satisfy hunger, when I'm hungry and trust my stomach to do its job.

Saturday, February 20, 2010

Persistent Cough and Fatigue

I've felt like I'm coming down with a cold since last November. I've had sore throats, dry coughs, and fatigue since then. Before I treated the achromobacter (intestinal bacteria), I had even more respiratory symptoms, like sinus pain, runny nose and headaches. However, those symptoms seemed to decrease while took caprylic acid to eliminate achromobacter. I don't know how CA would affect respiratory symptoms, because I thought CA only affected gastrointestinal infections. Nevertheless, after I finished the CA treatment, the cough, fatigue and upper respiratory symptoms seemed to worsen.

So I made an appointment to see my 'traditional' primary care doc on Monday. Perhaps achromobacter also infected my upper respiratory area, as often happens with cystic fibrosis patients whose immunity is challenged. Perhaps I actually have flu, although I didn't have any muscle aches until I began spring gardening projects. Least likely, but also a possibility, is my latent TB bacteria.

My mom's mother died of TB when my mom was 4 years old. So my mom always tested positive for TB. Her sister (my beloved aunt) developed active TB and was treated in a 'sanitarium' during the 50s before the TB antibiotics were discovered. As a child, I tested positive several times on skin tests. I vaguely remember that in my early 20s one doc gave me a blood test which confirmed TB. That doc wanted to 'treat my TB infection', but I didn't have any obvious symptoms. (My lung x-ray was clear.) So I declined treatment. Recently I read that the TB bacterium has morphed so many times in response to antibiotic treatments that the current standard treatment uses 4 different antibiotics during a 6 month period. OH JOY! Just what I need ... another antibiotic treatment to destroy my probiotics for a longterm period. That will allow new gastro bugs to overwhelm my good intestinal bacteria.

I will take my gastro stool test diagnoses and treatment plans from my naturopathic doc to my traditional doc. She readily accepted my NP's diagnoses for CD and those other 6 food allergies. So I suspect she will appreciate seeing my gastro 'bug' diagnosis and treatment history during the past 4 years. Granted, gastro bugs don't always cause the upper respiratory system. However, achromobacter can infect almost any area of the body, according to what I've read.

Of all the possible causes of my symptoms, achromobacter seems most likely and easily treatable. I doubt I can take caprylic acid for an achromobacter URI. However, my lab report indicated which pharmaceutical antibiotics could also kill achromobacter. I'll just need to keep taking probiotics during treatment for whatever bacteria is causing my symptoms. Best scenario: I just have a cold. Worst scenario: TB

Thursday, February 18, 2010

'Healthy' Eating Causes Deprivation??

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.

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.

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.

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.

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.

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.

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.