My Gut Makes Alcohol! (eBook)

Introduction

Picture this: I was at my pastor’s house for an Easter luncheon after church and I watched my husband Joe fall off the porch as if he were stone cold drunk. My gut clenched and then lurched; my heart sank, and my legs began to quiver. So many emotions went through my body-mind: shock, fear, embarrassment, worry, and confusion. I felt overwhelmed.

Joe is as dependable as the day is long. He’s a compassionate nurse, wonderful husband, and faithful companion. Joe was fine all morning as we dressed, ate breakfast, and attended church. He drove to our pastor’s home, we ate lunch and then out of nowhere, he turned pale, his eyes glazed over, he began slurring his words, and then he stumbled off the porch. Several of our friends helped him out of the bushes and back to standing but we all knew something was seriously wrong.

This small church in East Texas is our community, our social circle, and the well that waters our faith. Inexplicably, I felt shame and thought people would believe he was hiding alcohol. I had watched Joe go through many of these episodes at home, seemingly drunk out of the blue; but this was the first time in public among my church family.

“What is wrong with him?” “Do you think he is having a stroke?” “Does he need to go to the hospital?”

I was sure, despite our friends’ compassion and concern they had thoughts of alcoholism. We coordinated getting the cars home, so Joe didn’t have to drive. Part of me was mortified, but another part of me was relieved; finally, someone besides me was seeing this bizarre condition where he was drunk without drinking.

In the year 2010, I’d been a nurse for nearly forty years, and a doctor for twenty-one of those years, having earned a master’s degree in nursing and a research-based Ph.D. in health counseling. I’d never heard the term “Auto-Brewery Syndrome” and I had no idea how much that term was about to change my life.

Joe had been having these outlandish drunken-like episodes for nearly six years and I naturally searched the academic literature to find out what could possibly be going on with him. With the first serious episode I thought he was having a stroke, but when that was ruled out, we started to believe he had a neurological problem or an endocrine blood sugar disorder – perhaps diabetes or hypoglycemia.

Joe is also a nurse and had access, then as now, to the healthcare provided by the hospital where he works. Being friends with many of the doctors, he got lots of informal consults as well as more formal testing and medical consults. None of the doctors had a clue what might be going on, but his episodes were becoming more frequent and severe.

No one ever mentioned alcohol until the day I called an ambulance for a particularly severe episode. Part of the routine testing of someone who is nearly unconscious is to test their blood alcohol level (BAC); his was a whopping .271% - over three times the legal limit in Texas. I was astounded! Joe would have to have had 11-12 drinks to test that high, but he hadn’t been drinking alcohol.

Even now, it’s hard for me to use the word “drunk” because that implies drinking; most of the time he had not been drinking at all when these symptoms came on. I was bewildered that he could suddenly become drunk. The doctors said it was impossible, but I was witnessing it firsthand so I began to search the literature for what could make someone drunk without drinking.

A dear friend, Susan Rushing, helped me research the symptoms and discovered the term Auto-Brewery Syndrome (ABS). Thus, began my journey of searching the literature for ABS; and searching, and searching. While there were only a few articles on the subject, they were enough to establish my belief that ABS was what Joe had.

After a long, strange trip through medicine at its worst - health care providers accusing us of hiding alcohol, doctors saying we must be lying, or physicians denying that something like ABS could exist - we finally found a gastroenterologist in our small town who was willing to listen to us with an open mind.

In fact, after reading the articles we took to him, Dr. Justin McCarthy diagnosed Joe with ABS. After successfully treating Joe, Dr. McCarthy suggested to me that we publish his case in the medical literature which we did in 2012.1 I dusted off my hands thinking “that was that!”

But in September of 2013, National Public Radio (NPR) published an online blog about our case, Auto-Brewery Syndrome: Apparently, You Can Make Beer in Your Gut2 in the SALT that went viral. While the title is not quite accurate, since ABS produces ethanol not beer, the blog brought our open source article into public awareness, with over 54,000 downloads in the first year and over 203,675 views to date.

Suddenly, I was getting emails and calls from all over the world from people who had symptoms and from people wanting to know more about this strange and interesting malady. Doctors and nurses were calling, telling me they suspected one of their patients might have ABS.

This was the beginning of a sojourn that I joke is a second full-time job in my life. I accepted every interview I was offered, from local newspapers, radio stations, TV shows, even ABC 20/20: My Strange Affliction3 and BBC: The Human Brewery4, most of which were very professionally done. I still have friends tell me they saw me recently on BBC, or 20/20.

A few of the radio interviewers tried to laugh and make jokes about how wonderful it was to brew your own beer in your belly, but I used every opportunity to inform and educate while trying not to be too big a killjoy. I acknowledge that it might sound funny, but to the people suffering, it’s terrible because they never know when they might have an episode and endanger their own or someone else’s life.

In time, I was getting so many calls and emails that I started a website: www.autobrewery.info and linked it to a closed Facebook support group page started by one of our treating doctors. That’s when I began to understand the gravity of this condition as hundreds of people requested to join the group.

I have heard so many heart-wrenching stories by patients and family members that I’ve lost count. Family members freely express their worry and concern that their loved ones will hurt someone during an episode; they express depression when they cannot find effective treatment, and most distressingly, they express frustration and anger at the doctors and staff who don’t believe them and are often blatantly cruel in the face of their plight.

The flip side of that, of course, is the information, support, care, love, and hope offered by members of the group to one another. Weekly I’m privileged to witness compassion and advocacy by many of our members, not just helping one another but reaching out to medical organizations, hospitals, doctors and other primary providers, nurses, chiropractors, nutritionists, and even dentists to try and get ABS recognized and treated.

I’ve been in touch with over 250 families affected by ABS, so I thought it was time to tell our stories. The following pages are filled with the science of what we know so far that is contributing to ABS and the stories told by people with ABS and their loved ones – the caregivers – shared in their own words.

These stories are a small slice of the painful accounts I have heard over the past decade detailing health care provider ignorance, alarming trips to the ER, accusations of hidden alcohol consumption, harrowing descriptions of arrests and DWI convictions, and ruined marriages, finances, and lives.

I use the term “patient” throughout the book because the word comes from the Latin word patientem meaning “enduring or suffering” and gives us the word “patience”. Several decades ago, the nursing profession attempted to substitute the word “client” for “patient”, and it did not stick. I’m glad. I’ve grown to appreciate the word patient because of what those with ABS endure.

While I touch on the aspects of diagnosis and treatment of Auto-Brewery Syndrome, this book is in no way intended to substitute for medical advice from a primary provider who conducts a thorough assessment. The names of some of the patients and caregivers have been changed to protect their privacy.

My purpose in writing this book is a call to action. I’m challenging healthcare providers to listen to patients who don’t fit the usual mold. And I’m asking all of us to be more compassionate toward anyone with a rare or invisible illness.

Please check out my website at www.autobrewery.info. Whether you are looking for personal or professional guidance or just a good read, I hope you absorb the science and learn from our stories.