“It’s time for you to get past this and move on with your life.”
As I sat on a cobalt blue exam table, my primary care physician’s words ping-ponged throughout my mind. Even then, I knew it was a pivotal moment, one that would steer my life into a new and terrifying direction no patient wished to venture.
It was the moment I lost all faith in conventional medicine.
August 12th, 2015. In front of me, my doctor (we’ll call her Dr. Perry) stared quietly, waiting for a response. There was no anger in her eyes, more like desperation. She was desperate to “reach me,” to get me to understand—what I had was depression and an anxiety disorder. These symptoms I’d described repeatedly, a page-long manifesto of misery, weren’t real—they couldn’t be. It had been two months since I took the antibiotic, metronidazole (Flagyl), and there was no way the medication could be affecting me now.
What she didn’t realize was…I wasn’t the one in denial.
“I have come across many instances of this kind of reaction by physicians,” explained Derrick Lonsdale, MD, and author of Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. “The many symptoms expressed by the patient are interpreted as ‘psychological’ because they appear to be bizarre and conventional lab studies are often normal. The diagnosis is little more than an accusation of malingering. Furthermore, the absolute denial of any sort of vitamin deficiency causing disease in America has become a virtual mantra throughout the medical profession. Any suggestion of this by the patient reinforces the physician’s diagnosis of neurosis.”
“It is very bizarre,” he continued, “to see repeated stories where a drug reaction is denied by physicians. Worse yet is the doctor’s accusation of a patient’s imagination as the cause of symptoms. The Physicians Desk Reference often has one or even two pages listing the toxic effects of a given drug.”
The Beginning of my Metronidazole Nightmare
In June of 2015, I had a gut infection called c diff. Dr. Perry had diagnosed it and prescribed metronidazole, but five days into treatment, I found myself in the ER, unable to walk or speak. Included with those symptoms was a list of other issues so random, it was as if someone was picking them out of a big Bingo ball cage: dizziness, difficulty concentrating, shortness of breath, hand tremors, fatigue, brain fog, weakness.
At the time, I wasn’t afraid, because I believed this problem had an simple solution: just stop taking the drug and—poof!—all symptoms would disappear like a quarter in a magic trick. Another antibiotic was available for c diff, vancomycin, and the problem-solver in me thought this was a no-brainer.
In the ER, they did a CT scan, an EKG, took a urine sample and multiple tubes of blood, only to conclude that the issue was low potassium, even though not all my symptoms matched that diagnosis. Trusting the doctors, I allowed them to discharge me. I got a prescription strength potassium supplement, and then took another dose of metronidazole before heading to bed and then more the following day.
Less than 36 hours later, my mother rushed me to Dr. Perry’s office, as I once again lost the ability to walk and speak.
From the clinic’s lobby, my mother had to half-drag me into the exam room. When she spoke the words “metronidazole” and “side effects” to Dr. Perry, they were met with a face full of skepticism.
“I’ve never seen Flagyl do that before,” Dr. Perry insisted.
After arguing with my mother, the doctor did admit me to the hospital for observation. Maybe Dr. Perry and the ER doctors weren’t well-versed in adverse drug reactions, but hospital physicians were certainly in-the-know. Right?
Naïve Patient + Ignorant Doctors = Poor Prognosis
“I just can’t imagine it’s the metronidazole,” the pharmacist explained.
Six hours into my hospital stay, two doctors stood by my bed, the pharmacist sandwiched between them. My symptoms had once again improved, and my mother and I had explained what had happened like a song set on repeat. The doctors had tried—and failed—to convince us that metronidazole wasn’t the problem. So now they had brought in the big guns: the hospital pharmacist. We argued with her—every symptom I had was listed as a side effect of the drug.
“But that type of reaction…it would be really rare,” she had explained.
Game over. Not one doctor believed metronidazole was the problem. They had no other explanation, as my potassium levels had returned to normal now. How could having this drug reaction be so painfully obvious to me and my family, but so confusing to every medical expert I saw?
If left untreated, my infection could be fatal. Unsure what to do, I said softly, “I have to take something to treat the c diff.”
Half an hour later, the nurse brought me more metronidazole. I took it. Later that evening, I took another dose. Then the all-consuming panic set in.
The “Hysterical” Patient
That night in the hospital, my heart pounded so hard, I was afraid it would burst out of my chest “Alien” style. My face felt searing hot while my body shivered. The anxiety was set to PANIC and stuck there. Adrenaline rushed through my veins like it was fixed to a 30-second timer.
Nothing felt right.
I didn’t fall asleep until 4:00 a.m., and less than two hours later, I woke with a startle although there was nothing there to surprise me. Again, my physical symptoms—the difficulty walking and talking—had come roaring back, along with brain fog, hand tremors, dizziness—the works.
I had an orderly help me to the bathroom and there, I burst into tears. I cursed through slurred words and short breaths, and cried from sheer terror. C diff was a gun to my head, metronidazole a poisoned apple in my hand. And I was being forced to choose between the two. Another antibiotic was available to treat my infection, but the doctors refused to give it to me.
They were so certain my symptoms were just in my head, they were willing to bet my life on it.
Late morning, my symptoms partially subsided again, and my father visited; he argued with the doctor, my father’s voice much deeper and menacing than Mom’s and mine. “I don’t understand what the big problem is here. She wants to change her meds—so why can’t you do that?”
The doctor in charge of my case finally agreed to give me a prescription for vancomycin, but only after I left the hospital and only if my symptoms were still “bothering” me, as he explained. Later, after my father left, the same doctor entered my room unattended. He approached my bedside, shoulders squared. “I’m wondering—do you have trouble sleeping at night?” he asked.
Unsure how to answer, I replied sometimes, yes, when there were a lot of things going on.
He bobbed his head up and down, this all-knowing look on his face. “I think you need to see a psychiatrist.”
The bottom fell out of my stomach. I sat there, slack-jawed.
“It’s just…” the doctor stepped forward, and his professional demeanor caved. Those eyebrows knitted together. Impatience, irritation shone like searchlights from both eyes. “What are you so anxious for?”
I didn’t respond—didn’t know how to respond. What was I so anxious for? How could this be a question?
Despite the encounter, the hospital doctors later decided to just go ahead and give me vancomycin, with the off-handed disclaimer, “We still don’t think it’s the metronidazole, but…”
I left the hospital the next day, vancomycin in hand. Despite this nightmare experience, I was relieved in the fact that things would turn back to normal now. I could catalogue all of this into past-tense.
I was wrong.
“Although in many instances of drug use,” explained Dr. Lonsdale, “the side effects disappear when the drug is discontinued; metronidazole is an exception. Through its destruction of thiamine, it leaves in its wake a severe loss of efficiency in cellular energy metabolism. Unless thiamine is restored, the so-called side effects will continue indefinitely. The disaster comes about because the physician’s failure to take the patient’s symptoms seriously does not lead to effective treatment.”
But You Should be Fine Now…
Things barely improved after stopping the metronidazole. Although a few symptoms resolved, like slurred speech, others cropped up from nowhere—some starting days to weeks after stopping the drug:
- Difficulty swallowing
- Frequent urination
- Asthma-like respiratory issues
- Complete loss of appetite (twenty pound weight loss)
- Inability to stand up straight
- Difficulty walking
- Shortness of breath when talking
- Chest pressure
- Heart palpitations
- Face flushing
- Dry mouth
- Pressure at the back of the head
- Neck pain and stiffness
- Constant adrenaline rushes
- Crying spells
- Extreme fatigue
The list was so long, even I failed to fully understand how all these symptoms were possible in one body. No medical professional had an explanation for why this was happening and why it didn’t stop after discontinuation of metronidazole.
For two months, I couldn’t care for myself. I stayed with my parents; I lost twenty pounds, and no matter how hard I tried, working full-time was impossible. Before metronidazole, I had three jobs—one as a full-time assistant, another part-time job doing data entry, and one writing freelance articles for local magazines. I had to quit my part-time job, stopped writing, and ended up missing over 130 hours of work at my full-time job over that two-month time span. Despite my symptoms being listed as side effects of metronidazole, no diagnosis was given from any physician. With no doctor to back me up, at one point I worried I’d lose my full-time job.
In total, I saw eight general practitioners, including my primary care physician, and then a hefty bag of specialists: a cardiologist, an immunologist, an ENT doctor, a psychiatrist, and a therapist (to his credit, the therapist believed I had suffered an adverse drug reaction, but just like me, didn’t know why I still had symptoms). There were tests, from multiple CT scans to X-rays, EKGs, an upper GI, an echocardiogram, a heart monitor, a laryngoscopy, several lung function tests, and about 30 vials of blood taken.
One of the general practitioners tested me for illegal drugs. The doctors had more belief I was a drug addict than the idea that metronidazole could be affecting me six weeks after taking it.
When I was ingesting metronidazole, the physicians either insisted it was incapable of causing my symptoms or a reaction like that was “so rare,” it couldn’t happen to me. Now that I was off the drug, the rhetoric had shifted to: “Well, even if you had a reaction, you should be fine now.”
This not only left me feeling defeated and helpless…but ashamed. I felt so guilty for being so sick. It was around this time the suicidal thoughts kicked in.
Out of Body, Out of Mind
Six weeks after taking metronidazole, the insomnia worsened. I went eight days with barely any sleep. I tried every medication a doctor offered to mask symptoms, a conveyer belt of meds: Prozac, Paxil, hydroxyzine, Zofran, Ambien, and then mirtazapine. The mirtazapine allowed me to sleep, and with the rest, my body started to improve and the suicidal thoughts calmed. (It was also at this point I started to supplement magnesium and a general multi-vitamin.)
Now August, two weeks into the mirtazapine treatment, I met with Dr. Perry and that’s when she handed down the diagnosis of depression and an anxiety disorder. “It’s time for you to get past this and move on with your life,” she told me.
I did something else. I stopped trusting doctors, and began researching metronidazole on my own.
When a Google Search is Better than a Medical Degree
During the first two months after my initial reaction, I had looked into metronidazole but assumed (naïvely) that my doctors were too. They were not. If any answers were out there, it was up to me to find them. So I Googled—a lot. It became an obsession; I learned the history of the drug, where it was created (France), when the FDA approved it (the early 1960s). Whatever clinical trials they did at that time has kept the drug on the market for almost 60 years, despite those trials not being acceptable by today’s standards. The medication was considered “broad-spectrum”—a fancy way of saying it went everywhere in the body. The digestive tract, the bloodstream, saliva, genitals, all vital organs including the heart and lungs. Cerebrospinal fluid. The brain.
In addition to the trivia-facts, I read countless patient reviews on websites like drugs.com, webmd.com and—most of all—askapatient.com. People were complaining about the same symptoms, the same motor control issues, heart and breathing problems, and especially the neuropsychiatric issues. When anyone mentioned visiting their doctor, it was almost always about how the doctor dismissed the patient’s claim that metronidazole was the cause.
Then in late September 2015, I discovered a new term to plug into Google—metronidazole toxicity. When I did, I found out that what I had, it had a name:
Metronidazole-induced Central Nervous System Toxicity
It was the title of a systematic review, one that collected numerous case studies about metronidazole and its toxic effects on the central nervous system to form statistic data. The example they used in the review was that of an elderly woman. Two days on the drug, she began to have trouble speaking and then difficulty walking, which progressed to her losing the ability to walk altogether. Metronidazole was discontinued and she made a slow but steady recovery.
In total, the symptoms listed on the systematic review were:
- Dysarthria (slurred speech/difficulty speaking) 66% of cases
- Ataxia (loss of motor control skills, such as walking) 56%
- Dysmetria (lack of coordination of movement) 33%
- Altered mental state (neuropsychiatric issues) 33%
- Seizures 15%
- Nystagmus (involuntary eye movement) 8%
And the cause? If you have issues like losing the ability to walk and speak while taking metronidazole, there is about a 93% chance lesions have formed on the back of your brain, specifically the cerebellum. This causes a disorder called “cerebellar dysfunction,” leading to motor control issues, cognitive issues, and a possible altered mental state.
After drug cessation, the lesions disappear 83% of the time over the course of three months. There is poor correlation between resolution of those lesions and a resolution of symptoms.
Only 65% of patients fully recover from metronidazole toxicity. Another 29% have improvement, but not a full recovery, another 3% have unknown outcomes, and the remaining 3% have permanent cognitive impairment.
Medical Literature isn’t Enough…Really?
Three weeks after finding this review, I showed it to Dr. Perry. I reminded her of my symptoms, especially my difficulty walking and speaking, my slurred speech and gasping to speak.
“I have no documentation of slurred speech,” she replied.
Her words hit me bullet-hard, and I sat there, dumbfounded. She fished through my chart, reviewing my visit to the ER to the hospital—nothing. Not one doctor had written anything down about my difficulty speaking, despite it being one of my most prominent and concerning symptoms.
In fact, none of the symptoms I complained about during my ER and hospital visit were in my records. The only record they had of any significant symptom was from Dr. Perry herself, noting that I couldn’t walk due to “weakness.” I addressed this with her, and she insisted my difficulty walking in June wasn’t neurological in nature.
I sat in the exam room, staring up at the ceiling, allowing the fluorescent lights to sting my eyes. Could this really be happening?
Despite this new information, Dr. Perry did agree to order an MRI, the only test that could detect those white matter lesions the systematic review talked about. The MRI was performed two weeks later—now it had been over four months since my initial reaction and, sure enough, nothing showed, as the medical literature said was typical by that point.
Any chance of detecting an abnormality was gone.
During this time, I requested a copy of my own medical records and a little over a month later, they arrived. I read them all; the ER visit—the hospital visit. There was nothing, no mention of difficulty walking or speaking, just as Dr. Perry had explained. But there was one symptom mentioned several times—anxiety. From the ER, my shortness of breath when talking was excused away as anxiety. And from the hospital, my doctors had written it down thirteen times over the course of my forty-eight hour hospital stay.
Then, at the end of the paperwork, was the last appointment with Dr. Perry, and as I saw what she wrote, my hands tightened around the edges of the papers:
“Patient brought an article to clinic today and she thinks she has “metronidazole-induced CNS toxicity” and she wants an MRI. Of note, the article states patients that have this have cerebellar dysfunction, altered mental status and seizures. Patient has not had any of these symptoms.”
I’ll never know what was going on in Dr. Perry’s head when she wrote that statement. Could she be this much in denial about the drug’s toxicity to permanently mark my medical records like a scarlet letter? Or was this now her vain attempt to cover her own mistakes? Either way, it boiled down to one truth:
“Keeping accurate records is the sacred duty of any physician,” explained Dr. Lonsdale, “if not solely for consecutive management of the patient, it is surely for the protection of the physician. To leave out major symptoms described by the patient because it does not fit the doctor’s diagnosis amounts to malpractice.”
I Was a Textbook Case of Metronidazole Toxicity
Over the course of several months, my symptoms slowly improved on their own, where I was able to work full-time and live on my own. But flare up’s were common, some bad enough to land me back in bed. I also discovered that the metronidazole’s neurotoxicity is actually listed in the WARNINGS section of its FDA label, noting the key symptoms being dysarthria (difficulty speaking), ataxia (difficulty walking and/or arm control), and dizziness.
I was a textbook case of this drug’s neurotoxicity and none of my doctor’s had made the connection. Instead, they chalked it up to hysteria.
Excommunicated: MD Edition
Upon all of these new discoveries, I decided to set up another appointment with Dr. Perry to ask her about my medical records, but a week before the appointment, she called me and, as I sat with the phone hot on my face, I listened to her speech:
“Erin, I want you to know that I care greatly for you. I just want what’s best for you. But I don’t think we have the right ‘doctor/patient’ relationship. So I think it is best if, moving forward, I was no longer your primary care physician.”
Later, I found out she not only dismissed me as a patient but had me banned from the large clinic she worked, including another doctor’s office that I’d never visited that happened to be in the same building.
That would not do, not after all that. I got on the phone with her supervisor, who—at first—flat-out refused to meet with me. It took several minutes and a strong declaration, “I am going to have a meeting,” to get her to agree. A month later, I went to the meeting with Dr. Perry’s supervisor and the clinic’s lawyers (Dr. Perry was not present). Along with me was my mother and a doctor I worked with who also happened to be friends with the supervisor—a lucky break few patients have.
I brought in emails I sent in June of 2015 discussing my symptoms with doctors, colleagues and friends, including losing the ability to walk and slurred speech—that contradicted what was written on my medical records. Along with the emails, I also had a stack of medical literature including case studies, multiple systematic reviews and the FDA label that confirmed metronidazole’s toxicity. My doctor-friend validated my story, my symptoms and research, and I got the more appropriate diagnoses of “cerebellar dysfunction” and “altered mental state.”
Even after getting the diagnosis, no doctor would acknowledge that metronidazole was the cause.
My ban from the clinics was never lifted.
Metronidazole Toxicity: A Not-So “Rare” Problem
Over the course of a year, my body healed enough for me to enjoy social activities again. Nonetheless, flare up’s would still arise and they could last for days to months with no explanation.
Researching metronidazole more, I discovered the cerebellum wasn’t the only part of the brain affected. The brain stem was the second most-hit region, and the brain stem controls the autonomic nervous system. This includes: breathing, heart rate, blood pressure, digestion, temperature regulation, sleep-and-wake cycle, and your fight-or-flight response, among many others. Metronidazole could also damage nerves throughout the body, including the eyes and ears, a problem many other patients complained about in their reviews.
Branching out online, I connected with other victims of metronidazole toxicity. I shared the medical literature and created a blog. In addition, I started a Facebook support group; only people suffering from metronidazole toxicity are allowed to join. When the support group began, there were three of us. Now, three years later, there’s over 600 members.
Despite physicians insisting metronidazole toxicity is rare, patients were screaming about adverse effects across the internet. Metronidazole is the most-reviewed antibiotic on drugs.com, the second-most reviewed on webmd.com and, on askapatient.com website, metronidazole has the highest number of reviews when compared to all drugs, with the oral version of metronidazole having the 5th highest number of 1-star reviews (when all versions of metronidazole are included—IV, oral and gel—the drug has the highest number of 1-star reviews on the site). In addition, on Askapatient, it had the highest complaints about:
- Panic Attacks
It also had the second-highest number of complaints about confusion and paranoia. Patients are clearly being outspoken about metronidazole and its serious adverse effects. But from the medical community…barely a whisper.
How could this be?
Mechanisms of Toxicity and the Thiamine Connection
In November 2017, I suffered one of the worst flare up’s since my drug reaction in 2015. It just so happened, during that time, I ran across Dr. Lonsdale’s textbook, “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.” It caught my eye because I recalled the word “thiamine” mentioned in a couple of the articles for metronidazole.
I read the book and every symptom I’d had was listed. Going back to research, I discovered that metronidazole is similar to a ring of thiamine (vitamin B1) and, when it comes into contact with the vitamin, it binds to it, destroying it. This plummets the victim into a sudden, severe thiamine deficiency.
The symptoms of metronidazole toxicity and thiamine deficiency disease are identical.
That was why the drug’s toxicity kept “flaring up.” I had been skating on the edge of this drug-induced thiamine deficiency and any time my body endured stress, it depleted the limited thiamine I had gained and plummeted me back into deficiency.
Within two months of supplementing magnesium and high doses of Allithiamine (a fat soluble version of thiamine), my lingering metronidazole toxicity symptoms either resolved or became so mild, they could no longer debilitate me no matter what physical or mental stress my body endured.
A few months ago, I finished painting a house.
Nonetheless, I didn’t get off Scot-free. It has been almost two years since starting the thiamine regimen and, through trial-and-error, it has become apparent that the damage metronidazole has done is most likely permanent. Enzymes that are vitally important in energy metabolism require thiamine and if the symptoms arising from its deficiency are not corrected early in its manifestations—the enzymes deteriorate due to lack of use. To resuscitate the enzymes, megadoses of thiamine are required, usually for a long time. Symptomatic recovery can be expected unless permanent cellular damage has developed.
In other words, if caught early, thiamine deficiency is almost always reversible. Due to medical neglect, I went two and a half years without appropriate treatment.
Only the accidental finding of a book has been responsible for my “almost” recovery. So every day, I have to swallow eight pills to over-saturate my body with high doses of thiamine and also magnesium in order for my cells to function properly. Toxicity symptoms—although no longer crippling—still present themselves on a regular basis. I’ve learned to push through, to manage, to rest more if I’m having an “off day.”
Overall, I felt like I got off easy compared to so many other people suffering from adverse drug reactions, but it still hits me sometimes—the “what if’s.” What if my doctors hadn’t forced me to continue taking metronidazole? What if they had recognized the toxicity symptoms early on? What if they—medical professionals—had researched the drug (surely better and faster than I could have given their medical degrees) and discovered the connection between metronidazole and thiamine long ago?
What if they had simply believed me?
And that’s the scariest part. For two and a half years, I suffered from a chronic illness that was not only very real, but also very treatable. However, because of the ignorance (and sometimes arrogance) of conventional medicine, patients like myself are forced to suffer. We are sick in a way that is inconvenient to doctors and their beliefs in their own medical dogma.
There are some scars that will never heal. My faith in medicine has been shaken to its core, and now that I’ve finally been able to see the medical structure from a different angle, it is obvious that medicine is more like a house of cards than a mighty castle. Doctors scare me now, not because I think they are bad people, but because of one simple truth:
Doctors are in denial.
They are in denial of the drugs they give to us every single day. My story isn’t an isolated incident. When it comes to drug reactions and how the medical community responds, my story is—unfortunately—the norm.
“There are four conflicts for a patient who has suffered side effects from Flagyl,” explained Dr. Lonsdale. “The first is finding that the doctor simply denies that the complex symptoms are the result of a prescription drug and accuses the patient of imagining them. The second hurdle is the difficulty of comprehending that their body has been deprived of thiamine by the action of the drug. The third difficulty is understanding that the toxicity will last as long as the thiamine deficiency exists and that it is not a matter of taking a few vitamin tablets. The fourth problem to be experienced is that, if and when the patient starts the megadose thiamine, the symptoms may get worse for an unpredictable time before they get better. There is no doubt in my mind that Flagyl is dangerous enough to be discontinued. This form of toxicity needs understanding by a physician who can take responsibility for its treatment.”
If you’ve suffered an adverse reaction to metronidazole, you’re not alone. Learn more on my blog. For victims of metronidazole toxicity or family members trying to find ways to help loved ones with the toxicity, join the Metronidazole Toxicity Support Group on Facebook (you need to answer a question to join).
If you have suffered from the side effects of this or others drugs and would like to share your story on Hormones Matter, contact us.
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This article was first published on September 9, 2019.