November 2022 through June 2023 were my active Lyme disease months. Similar to unresolved BIND issues, lab results for Lyme disease frequently show no active Lyme infection; thus, there is no longer cause for concern patients are told. The patient could be experiencing debilitating brain fog, confusion, and memory loss, so common in Lyme, but the doctor declares the patient recovered based on their recent Lyme negative test results. That is certainly what happened to me working with my (former) primary care physician. And my story is typical.
The patient returns to the doctor and describes continuing, even worsening, neurological symptoms. Tests indicate no active infection and suggest general good health. The doctor’s notes on the patient might include the word malingering or a recommendation for a mental health evaluation. It appears to the doctor (and maybe even to the patient) that the “recovered” Lyme patient is actually suffering from psychological or psychosomatic issues. And the patient, who is actually dealing with undetected Lyme co-infections, continues to suffer worsening health. But the test results show no worrisome issues.
This scenario is not far off from what BIND (Benzodiazepine-Induced Neurological Dysfunction) patients deal with. Perhaps they reported a general feeling of sleeplessness at night or feelings of anxiety in their workplace to their doctor. And many a doctor will prescribe a benzodiazepine. The patient does improve. Sleep seems to come easily or anxious feelings diminish or even disappear. The benzodiazepine appears to be a successful treatment. Doctor and patient are relieved. The benzo seems to be the right pill for the patient.
One of the differences between the Lyme patient and the BIND patient is testing. Blood tests can show Lyme infection, as imperfect as those tests are. Yet patients who report issues that lead doctors to prescribe a benzo are dealing with the complexity of the brain and CNS, and there is no observable bacterium as with tickborne Lyme infection.
The anxious and sleepless who are prescribed a benzo are given a drug that affects their GABA receptors, yet the drug is not given because GABA receptor dysregulation has been detected in a blood or imaging test. The dysfunction happens because of the drug. I repeat. The benzodiazepine creates the GABA receptor dysfunction.
Before the benzodiazepine prescription is given, tests might be run to rule out other health issues. But, keep in mind, the doctor prescribed the benzodiazepine for a problem with an elusive source. And, as far as current test and imaging capabilities go, the source of the problem is not observable. How the drug works in real time cannot be monitored visually. The ability to do so is not there, not in humans anyway. The observable action is reserved exclusively for rodent studies at this point.
And, continuing to follow this piece’s patient subject as an example, we see that when they next visit the doctor, they report new physical and neurological complaints — unexplained pain, vision issues, and inner agitation sensations — and dramatically worsening anxiety. The doctor runs blood tests again. Nothing of consequence in the patient’s physical health is indicated. The doctor concludes that the benzodiazepine has not been adequately effective. This particular doctor example believes that mental health issues were pre-existing and only now, through observation over time have the patient’s deeper psychological problems risen to the surface. He increases the benzo dosage and adds an antidepressant plus a pain medication. What the doctor doesn’t seem to consider are the limitations of his method of observation regarding the patient’s mental health. His conclusions are based on theories that are more philosophical than scientifically provable at this juncture. Based on the dismal record of long-term success with benzodiazepines, this application of theory is highly suspect. This is bad medicine.
Shouldn’t there be a proper test for responsible benzodiazepine use and safety? Certainly a test needs to be developed to determine when a patient has entered BIND (Benzodiazepine-Induced Neurological Dysfunction). If there was a proper test for BIND, if the observable fact of it could show up clearly in a lab test, that would be progress, wouldn’t it? Because, as it stands, other than promising imaging studies on lab rats, the available proof is in patient reports and symptom lists. And doctors, medical institutions, and society as a whole dismiss patient reports as unscientific. Even though patients are feeling and experiencing outrageous torturous symptoms without reprieve over long periods of time. Their health falls apart and with it their world. And the benzodiazepine prescribing continues.
There are tests that show a genetic predisposition to various benzodiazepines’ potential harm to a patient. When I was reeling and retching and spinning and choking and drowning in my worst benzodiazepine withdrawal months, my very cooperative and forward-thinking doctor, a functional medicine practitioner, ordered genetic tests that were decidedly helpful during my difficult taper off of Klonopin. The genetic testing showed an intolerance to diazepam (Valium). Whether truly genetic or epigenetic, there is something to it. I only wish I had known in advance. Oh, how I wish I had known!
We know the action of a benzodiazepine on a GABAA receptor is somehow observable. We know that detecting a benzodiazepine molecule at the point of contact with a GABAA receptor, followed by the opening of a gated calcium ion channel, with glutamate entering the scene as a contributing factor, too often results in severe illness and disability. It is observable somewhere and somehow. But we humans at this stage of medical history cannot observe the process in the human brain and nervous system because we have limited means for visualization.
And we victims, just about half of us prescribed a benzo long-term (more then 2-3 weeks) suffer because those who do not have the humility to say “I don’t know,” “I can’t really see,” instead use their limited knowledge to harm us. Take another pill. And maybe another. You have mental health issues. Yadda yadda yadda.
Most doctors do not believe us, the benzodiazepine victims, especially those of us who present them with the facts of benzodiazepine injury. Replying in kind, I don’t believe most prescribers anymore. And that is based on observable benzodiazepine history truth.
— Holly Hardman
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