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.