The Pain of the "Afflicted": Part 2, The Healers

by Jarod Masci

The Healers:

The patients shown on the Netflix documentary series “Afflicted” are desperate. They are suffering greatly, confused, and searching for ‘help’ continuously. Enter the diverse group of individuals stepping up to answer the call. At best, there are trained medical experts and physicians willing to try unproven treatments for patients who are unable to find relief. These providers acknowledge that validation is the key ingredient to successful treatment of the chronically ill patients in the documentary. One brave soul even admits that his positive attitude and optimism aid in the “placebo effect” that ultimately helps his patients recover. Some of these providers may even believe that their off-the-wall treatments are medically valid, despite the lack of evidence or even sound rationale for why they would be effective. Example: laser treated “ozone” that is inhaled through special syringes, which is essentially air. This is the best case scenario.

Further down the road of irresponsibility and exploitation are the largely anonymous “supplement” peddlers. Patients on the documentary joke several times that they don’t even know what the mystery substance that they’re ingesting is, or even what benefit it’s supposed to have. “I just take it because my naturalist told me it will help me.” This mind-boggling faith in self-appointed experts and their expensive magic potions is both ponderous and disturbing. As one skeptical friend gently asserts in one episode, “If you still feel terrible, how do you know that this is working…..?” The answer, of course, is that they are ‘synergistic’, a brilliant method of convincing desperate people that they have to take all of the supplements, or they will be ineffective and their condition will get even worse. Are all herbal remedies and supplements a sham? Of course not. There are undoubtedly botanical treatments that are effective but haven’t been widely studied. But there’s a problem: the bar for supplements is so low that the makers only have to prove that they aren’t acutely poisonous. By this criteria, cigarettes could be marketed as a botanical treatment. Vague suggestions of improved circulation, lymphatic drainage, decreased inflammation, and increased energy are neither supported by evidence nor even have a proposed rationale. These same effects could more reliably be produced by walking regularly outside. The validity of these substances comes from the secret knowledge that ‘your doctor doesn’t want you to know about them (gasp)’. If it opposes mainstream medicine, it must be good.

Side Note: As a psychiatrist I am located squarely on the fringe of mainstream medicine to begin with, and I advocate more than most psychiatrists for non-medication based treatments. These include counseling, meditation/yoga, exercise, nutrition, massage, acupuncture, TMS, medical cannabis, light therapy for depression, and in cases of verified deficiencies and genetic abnormalities even specific vitamins and supplements. Given that most of these alternative treatments are free and all are supported by scientific evidence, I admit to being highly skeptical of mystery substances and bizarre treatments that are both expensive and not supported by any evidence at all. I have treated a patient who unknowingly took several supplements with the same ingredients who developed permanent neurological deficits from vitamin toxicity. For example.

The final stop on the road to taking advantage of desperate people in pain are the players who are proposing wildly expensive treatments for ailments diagnosed through sophisticated looking alternative tech devices. This appearance of legitimacy and veneer of pseudo-science sickens me. In the documentary it is clear that the patients respond immediately to someone listening to them and treating them with interest and respect (sounds suspiciously like psychotherapy, no?). This approach is then peppered with diagnostic gadgets that appeal to people who wait in line for the new IPhone, convoluted descriptions of their physical ailments that validates their beliefs (‘I was right, it is electromagnetic sensitity in my dental fillings!’), and culminating with the finale: ‘The condition is worse than we thought, we caught it just in time, and lucky for you I am the only person who specializes in this rare and special disease. You are a rare and special person. The treatment costs $20K.’ Some of these last group are actually physicians. Well intentioned or no, we should know better. The hubris in believing that everyone else in medicine is wrong and you’re right is combined with the convenient omission of the potential for emotional distress to be the cause of vague and shifting symptoms. Emotional pain leading to physical symptoms is NOT rare and special. It is estimated that 1 out of 3 emergency room patients (not counting bleeding wounds and broken limbs) in th U.S. has no organic basis for their symptoms. 1 out of 3. These people are not fakers, it is not all in their heads. They are experiencing real pain and require real, evidence-based psychiatric care.

Or, you know, it could be a rare 1 out of 10 million disease. That may or may not even exist. And requires unverified $20K treatments. Please help….

The Pain of the "Afflicted" on Netflix: Part 1, The Patients

by Jarod Masci

The Netflix documentary series “Afflicted” follows the lives of several Americans struggling with rare and/or controversial medical disorders and their attempts to find relief from their varying symptoms. The series offers little narration and is comprised largely of face to face interviews with the patients (as a physician I can’t bring myself to label them the “Afflicted”), their loved ones, alternative treatment providers, and medical experts speaking in general terms about the various disorders and symptoms.

Several themes emerge from these groups:

The Patients

As a group, the pain and suffering of these individuals is undeniable. Regardless of the origin of their symptoms (undetermined organic conditions, physical manifestations of emotional distress, or likely a combination) they are not “making things up” and clearly their experiences are not “all in their heads.” They appear to seek legitimacy and validation for their conditions above all else, and their identities have clearly become consumed by their fixation on their symptoms. This is not an indictment of their characters, but an unfortunate by-product of the demonization of “Western Medicine”, the juggernaut of “Alternative Medicine” and its many charlatans and false promises, and the very real pain experienced by these individuals.

Whether caused by disappointing personal experiences or the reliance on group wisdom and social media, their prevailing attitudes towards the medical community is one of distrust, invalidation, and callousness. As a psychiatrist who works with scores of individuals struggling with both emotional and physical pain, I am saddened by this. It should come as no surprise to anyone that one’s emotional and mental state can worsen or alleviate symptoms, regardless of cause. Cancer patients, for example, experience better outcomes and experience less pain and loss of function when they are appropriately treated for co-occurring mental health problems and have an optimistic attitude toward their prognosis and treatment. On the flip side, everyone living person has at some point experienced physical symptoms as a result of anxiety, depression, or other emotional pain: stomach pain from stress, chest pain from panic, fatigue from depression, fainting from shock, etc. (On a personal note, I had back surgery as a young man following an accident and to this day I experience back pain when I am anxious or stressed. There is nothing physically wrong with my back during these times, and it is no coincidence that the physical manifestation of my emotional distress is the site of so much past physical distress).

So why, then, are individuals seeking answers, willing to subject their bodies to bogus “treatments” and mysterious elixirs, so threatened by the idea that anxiety and depression can be at least worsening, if not outright causing, these symptoms? Even if the symptoms are purely organic in nature, the distress caused by them is immense and should be addressed. Whether or not the “Chronic Lyme Disease” is present, shouldn’t every avenue be explored for potential relief from these symptoms? It seems that even entertaining the idea of mental health treatment and “chemicals” (never mind the armloads of mystery supplements ingested daily with religious devotion) for their emotional pain in some way invalidates their struggles. This is baffling to me. There seems to be a disconnect with the cause of an ailment and the need for treatment of any and all aspects of that ailment.

To put it plainly, on viewing the documentary, the validation provided by dubious alternative treatment providers that, ‘yes, this is a purely organic unexplained medical condition’ seems to outweigh the very likely possibility that mental health treatment could help alleviate their suffering. The over-identification with this conclusion requires the patient to believe that medical doctors are conspiring against them, along with pharmaceutical companies and anyone in their lives who dares to question the validity of this conclusion. Doctors must want people to be sick, are unwilling to listen, and will dismiss everything as “imaginary.” In a later episode, one of the patients states that he has been “living my life like a narcissist” which is somewhat unfair to himself. Pain and distress, regardless of origin, can dominate one’s existence. No one else knows what these patients are experiencing on a daily basis. Their fault lies in their stubborn resistance to mainstream traditional medicine and their utter lack of skepticism of anyone who leads off with the validation that “You’re right, you do have _________ Sensitivity Disorder. Only I have the secret knowledge needed to help you….” Taken to extremes, this results in devastating isolation and obsession with symptoms and treatments while largely ignoring how they are affecting loved ones and missing out on life. In essence, they become the affliction, which makes health and wellness an unknown and even threatening proposition. If I’m not the guy with "Mold Sensitivity”, then who will I be?

Non-FDA approved antidepressant may be available for difficult to treat depression

by Jarod Masci

An antidepressant with a unique proposed mechanism of action, Tianeptine (Stablon is one trade name) has been used with some limited success globally for years. The novel mechanism of this medication involves some activation of opioid receptors and tracts associated with the mesolimbic dopamine pathway in the brain. This fact led to some concerns in the U.S. about potential for abuse, apparently hobbling its potential for clinical success in this area.   This same opioid receptor activity that worried some physicians in the U.S. , according to proponents of this drug, could actually be the reason why it is effective for some patients. The area of the brain that appears to be defective or underactive in individuals susceptible to addiction could potentially be "turned on" safely with this medication, leading to more enjoyment of positive activities and thus improving depression symptoms. This sub-type of depression, or more accurately this return to an anhedonic pre-addiction state, likely represents a return to baseline for individuals who experienced underactivity of reward pathways as a result of genetic variants. This gene-based underactivity may be independent from the theorized brain changes that can directly result from substance use itself.

The argument for Tianeptine could be made that patients with a history of addiction, particularly opioid dependence, often experience depression that is difficult to treat after achieving sustained sobriety and that a controlled stimulation of these circuits with Tianeptine could improve mood and potentially help prevent relapse rather than trigger it. Similar rationale for avoiding psychostimulant medications for patients on Buprenorphine has been largely debunked, with patient outcomes improving with appropriate ADHD treatment rather than patients experiencing relapse due to the activation of the reward pathway by a different substance.

If a stable patient in recovery, or a patient with a strong family history of substance abuse, experiences depression that does not respond to standard antidepressants or other evidence-based therapies such as TMS, cardiovascular exercise, CBT, and light box therapy, the argument could be made to try Tianeptine.  In the aftermath of the devastation caused by the current opioid epidemic, the time is at hand to think outside the box when it comes to the options for treatment resistant depression.