Allergic to the world: can medicine help people with severe intolerance to chemicals?

She says she is a universal reactor. She became allergic to the world in the 1990s due to the mold in her home and the paint on her kitchen walls. There were a lot of public spaces with artificial fragrances. Visiting doctors were made to torture by the scented Disinfectants and Air Fresheners in the hospitals. She couldn't attend in- person social gatherings because of the pervasiveness of perfumes and colognes. The smell of pesticides and laundry detergent made it difficult for her to step into her own garden. Leaving society felt like the only solution to Sharon's illness. She asked her husband to shower and strip whenever he came back. She was greeted by her grand children through a window. Sharon had been living in a house for more than six years when we met.

The mild, mundane end of a chemical sensitivity spectrum was represented when I started medical school by the burn on my nose and eye caused by the formaldehyde-based solutions used to embalm the corpses. The other extreme of the spectrum is an environmental sensitivity of unknown cause or multiple chemical sensitivities. The condition is not recognised as a distinct medical entity by the World Health Organization or the American Medical Association and so an official definition of it is not available.

The lack of a distinct set of signs and symptoms is one of the reasons why there is disagreement over the validity of the disease. Sharon experiences a wide range of symptoms when she reacts, from brain fog to chest pain. There are many different factors that can lead to MCS. Sharon is one of the many people who endure severe, chronic illness due to the lack of consistent physical findings and lab results.

The first case of MCS was reported in the Journal of Laboratory and Clinical Medicine. Although he claimed to have seen 40 cases, he focused on the story of one woman, 41-year-old Nora Barnes. She showed up at the office at the university with a variety of symptoms. She worked as a cosmetics salesperson. Her arms and legs were swollen and she couldn't work because of her headaches. Barnes was previously diagnosed with hypochondria, but she was desperate for a true diagnosis.

When she checked into her room on the 23rd floor of a hotel, she was far away from the noxious motor exhaust that was filling the streets of Chicago. There are 30 substances that Barnes reacted to when touched, including nailpolish, food dye,aspirin, and synthetic opiate meperidine.

Barnes and his 40 other patients were found to be sensitive to petroleum products in ways that defy the traditional picture of allergies. Patients with chemical sensitivities were showing an intolerance rather than an adverse immune response. His patients were vulnerable to toxicity due to low concentrations of certain chemicals that they were unable to metabolise because of their inability to digest Lactose. He said that chemical sensitivity research was being suppressed by the distribution of wood and oil. He believed that MCS was more than just a matter of scientific exploration. He recommends avoidance of exposure in his report.

The completely novel but quickly controversial field of environmental medicine was the subject of the abstract. We don't ask about the ties between the environment and wellbeing anymore. The dangers of secondhand smoke, the realities of climate change, and the nature of respiratory ailments such as asthma are all known. There was an issue with the patients that lacked abnormal test results. Conventional allergists resisted the hypothesis that they were allergic to anything.

There was no light in the room. Why was it only rearing its head at this point? He wanted to know why this seemed to be a distinctly American phenomenon. The only other mention of chemical sensitivities in medical literature was in George Miller Beard's 1884 book A Practical Treatise on Nervous Exhaustion. The term neurasthenia, which was used to describe the exhaustion of the nervous system in the US, is no longer used. Like Beard, Randolph saw chemical sensitivities as a disease of modernity and thought of the origin as wear-and-tear.

After the second world war, Americans encountered synthetic chemicals more and more in their homes, at concentrations considered acceptable for most people, according to a proposal by Randolph. Patients were vulnerable due to chronic exposure to these subtoxic dosages. The American Academy of Environmental Medicine was founded by the Society for Clinical Ecology on the basis of this theory.

His popularity went up as patients came to him. Despite this growth in interest, researchers never identified blood markers in patients, and trials found that people withMCS couldn't distinguish between placebos. In 2001, a review in the Journal of Internal Medicine found that the phenomenon was culturally bound, despite the fact that it was almost completely absent outside western industrialised countries.

A leftover label was used after every other possibility was eliminated. Quebec's public health agency, the INSPQ, published an 840-page report that concluded that there is an anxiety disorder. Serious mental illness is, after all, the product of neurological function. The patients I spoke to were offended by the language. Reducing what they felt in their bodies was not acceptable.

I will call Judy because she said I would tell doctors my symptoms and then they would run a complete blood count and tell me I looked fine. Patients who are stigmatising may never get the level of specialized care they need. Judy was often bedbound from crushing fatigue after her treatment, and no one took her serious. She thinks a lot of doctors don't know that we are intelligent. A lot of people with chemical sensitivities spend a lot of time researching and reading. I probably read more papers than most doctors.

Judy was told by doctors that she was stressed when she was a child because of her illness. The doctors said she was stressed after a health crash left her bed bound for years. After moving to Massachusetts, she had a paint job at her home that made her sick. She used to go to the art museum on Saturdays, but fumes from the paintings made her sick. Every primary care doctor in her city was visited by her. The majority of them reacted the same way: with a scowl and a prescription. Judy has never been helped by an allopathic doctor.

One of the few doctors who diagnoses and treats patients in New York is Morton Teiche. There is a side door in the grey-brick building that hides the entrance to his practice. The first thing that caught my attention as I entered the waiting room was the huge mountain of folders and binders hugging a wall. I was expecting Teich's clinic to be like the environmental isolation unit used by Randolph in the 1950s, with an airlocked entrance, blocked ventilating shafts, books and newspapers in sealed boxes, and water in glass. There wasn't anything else. I have seen family medicine practices before, but this one was very old. There were brown linoleum floors in the physical examination rooms. There were no doors.

Several of Teich's patients were sensitive to certain chemicals. When he introduced me, as a student, to his first patient of the day, she admitted to never having heard of the condition. MCS is a symptom and you have to remember that. It is just one part of my patients' problems. I want to get a good history and find the cause. He said that he had not observed any patterns suggesting an organic cause. Most of the time.

mold was cited as a probable cause by many people with MCS. In 1998, Sharon had chest pain after she discovered black mould in her family's trailer home. Sharon's primary care physician declared that she was having a panic attack due to the stress of a recent miscarriage after a cardiac exam produced no remarkable results. Sharon found that her health decline was caused by this and that her symptoms only got better once she started sleeping away from home.

Neil Nathan, a retired family physician, wrote a book called Toxic in which he argued that bodily sensitivities were the result of a hyper-reactive nervous system and a vigilant immune system. The conditions that Nathan describes are not supported by academic medicine, and they are subject to the same critique.

William Rea was a former surgeon. She was diagnosed with mold toxicity. The man told me thatuld is everywhere. It's not just inside. There is a mold on leaves. People with no seasonal allergies can become sensitive to chemicals during autumn. He told me that when trees lose their leaves, they excrete mold. He thought that American mould was not American at all and that it was an Asian species that rode wind currents over the Pacific. His wife died from ovarian cancer. He thought that her disease was caused by mould.

NYstatin is an antifungal medication that can be used to treat yeast infections in the vagina and mouth. He said he had an 80% success rate. I was skeptical that a cheap and commonplace drug could cure an illness, but I could not be critical of his record. The people I met in online support groups who seemed to be permanently in the throes of their illness were miles away from the patients I met in the hospital.

I was told that Teich was not a doctor. An anti-science point of view was used by this man, who believed that the vaccine could cause a condition called "acuteautism" When one of his patients, a charismatic bookworm I will call Mark, arrived at an appointment with severe, purple swelling up to his knees and a clear case of stasis dermatitis, Teich blamed mold and wrote a prescription. When I asked how a bad rash on his legs could be caused by a fungus in his toes, he said it was because of the toxins released into the blood. Most people don't notice until it's too late

There are so many moulds and fungi in our indoor and outdoor environments that they are easy to scapegoat for illnesses. The concept of "sick-building syndrome", in which visible black mold is thought to increase sensitivity and make people ill, stems from the idea of mycotoxicosis. Mark pointed to the demolition of an old building across the street from his apartment as a source of mold in the atmosphere. The diseases caused by moulds are limited to allergies, hypersensitivity pneumonitis, and infections. Patients who are immunocompromised, hospitalized or have a catheter are more likely to be affected by disseminated infections. If it's true that moulds such as candida can damage multiple organs, then it must be spreading through the bloodstream. I haven't seen a patient with MCS who reported a high temperature as part of their experience.

Blood cultures were not used to verify his claims of "systemic candidiasis", and instead he looked to the nails for proof.

He said he didn't need tests or blood work. I don't usually order them. I can see that he has mold. It was common for Teich to ask his patients to remove their socks to see the ridges on their toenails.

I met a couple who were both chemical sensitive but not crazy. Cindy was an upper-middle-class white woman who had a history of allergies. She became sick when she smelled laundry detergent and other scented products. Both her and her husband's sensitivities were greatly reduced when they were put on the drug.

The standard treatment for anxiety and depression in Cindy's case was a course of antidepressants and cognitive behavioural therapy. My illness causes a lot of stress and it helps to deal with it. She told them to live despite everything.

Stress and anxiety can cause mental health problems. He told me that he had no illusions about the effects stress has on the body. The mind and body are connected. The whole person needs to be treated.

Donald Black is the associate chief of staff for mental health at the Iowa City Veterans Administration Health Care. A recent article he co-authored took a uniform stance on the disorder. Black was a professor at the University of Iowa when he interviewed a patient in a drug trial. He asked the woman to list her drugs, and then watched as she loaded her bag with supplements and a book.

A colleague of Black's diagnosed the woman with systemic candidiasis. Black wasn't sure what to make of it. The woman would be very sick if that was true. It wasn't up to a Psychiatrist to treat a disease. He made the diagnosis. He might have done a physical or blood test. The patient told the doctor that her symptoms were related to candidiasis. The symptoms were related to chemical sensitivities. Black discovered that his colleague had fallen in with the clinical ecologists after he advised the patient to discard her supplements.

There was an endless number of names for this condition, and Black was interested in it. He enlisted the help of a medical student to find subjects who had been diagnosed by clinical ecologists with chemical sensitivities. Every participant in the study was asked a series of questions to see if they met any of the criteria. Compared with the controls, the subjects were more likely to have major depression and more likely to have panic disorder oragoraphobia.

The most compelling evidence for MCS came from case studies of large-scale events such as the Gulf war where soldiers were exposed to pesticides and pyridostigmine bromide pills to protect against nerve agents. The number of victims who developed chemical sensitivities was much higher in both instances. According to a national survey of veterans deployed in the Gulf war, up to a third reported multi-symptom illnesses, including sensitivity to pesticides, double the rate of veterans who hadn't deployed. The findings have been used to breathe new life into the idea of postindustrial toxicities leading to intolerance. The same has been said of the first responders and the World Trade Centre's nearby residents, who developed pulmonary symptoms when exposed to "cigarette smoke, vehicle exhaust, cleaning solutions, perfume, or other airborne irritants."

Black doesn't have any clinical experience with patients. He had only seen a small number of patients over the course of his career. He wrote an article about MCS and a guide in a major online medical manual on how to treat it as a mental illness. He told me that there was no way for physicians to regain the trust of patients who have been hurt by the medical system. There will always be a group of patients who are looking for answers or treatments that traditional medicine can't provide. People who saw clinical ecologists were the ones who left society. These were not the patients that Black thought psychiatry needed to focus on.

It became clear to me that the leading professional on the subject had little or no experience treating the disease. Black noted in his 1990 paper that traditional medical practitioners need to develop new approaches to keep patients in the medical fold. The study subjects believed that their clinical ecologists had something to offer them that other people didn't: sympathy, recognition of pain and suffering, a physical explanation for their suffering, and active participation in medical care.

I wondered if Black had given up on these new approaches because few people wanted to see a Psychiatrist.

P hysicians on either side of the debate agreed that mental illness is a crucial part of treatment, with one of them believing that stress is the cause of stress. Christine Oliver, a doctor of occupational medicine in Toronto, was interviewed to reconcile the views. Oliver thinks that both stances are correct. She said that there is a growing consensus that this is a public health problem.

Oliver is a third position that takes the illness experience seriously and sticks to medical science. She believes that due to lack of research, we can't treat MCS directly and that's why she's a "MCS-agnostic" physician. Oliver agrees with the idea of avoiding exposure, but she understands that this approach has resulted in traumatising changes in patients' abilities to function. Finding the right housing is a priority for her. Many of her patients live in public housing or multi- family dwellings because they can't work. The doctor of a patient is a social worker. Reducing scented cleaning products and soaps would make hospitals more accessible. Finding a non threatening space with digital access to healthcare providers and social support is the best way to allow the illness to run its course.

It's a chronic illness whether it's organic or psychosomatic. The hardest thing about being chronically ill is that most people don't understand what you're going through. You want to be understood in a way that you can't be because of your loneliness.

Symptomatology is what debilitates normal human functioning in chronic illness. A patient's suffering can be deadened by the use of analgesics. The same can't be said for the symptoms of MCS. There are few established avenues for patients to completely avoid triggering their MCS, and so they learn to orient their lives around mitigated symptoms instead. Their existence is defined by theMCS.

Sharon wasn't able to build a different life as a housebound person Sharon didn't feel left behind as the world moved forward. She was able to live with chronic illness because of the internet. Sharon prays in bed on a daily basis. She takes a lot of pills and listens to music on the internet while she prepares her meals for the day. She spends the rest of the day on her computer, checking her email, and watching videos on the internet. Then a night's sleep. Sharon has been living this way for the past six years and she doesn't expect anything different in the future. I was taken aback when she said she was not lonely.

Sharon keeps in touch with her 15 Grandchildren despite not having met most of them. Sharon is constantly communicating with other people. Sharon wrote that some people are very much in the public eye. I'm sure I am. It is possible to be content with online friends, even if you need physical touch. This is how I live! Sharon formed online relationships with other housebound people with chronic illnesses that were the longest lasting and most alive relationships she had ever known. Two years ago, when her best friend died, she met her best friend in person for the first time in 20 years. Sharon wrote that it was difficult for her.

Sharon's life didn't change much from the Pandemic. Covid-19 made her situation better. Staying indoors was normalised, Sharon's local church live-streamed Sunday service, and doctor appointments became the default. Sharon's network grew as older adults were isolated.

The birds historically used to detect toxic levels of carbon monoxide in coal mines, so people within the online community call themselves canaries. The small birds would likely die before the miners if the metabolism and respiratory rate were high. Will anyone listen?

The search for a diagnosis took a long time.

Vera, who was bedbound from MCS for 15 years after a bungled surgery, said, "We struggle and suffer in silence." The internet has made it possible to find people like themselves. We need to rethink chronic illness, which will become more common in the aftermath of the Pandemic, because what matters to the patient is not only a scientific explanation and a cure, but also a way to live a meaningful life. Arthur Kleinman made a distinction between illness and disease in The Illness Narratives. Illness is the lived experience of bodily processes. He writes that symptoms and disability are the main difficulties that arise in our lives.

We are alienating the people whose illnesses have deteriorated their ability to function at home and in the world if we broach the topic of whether or not it is true. The patient-physician relationship is not the root of the fundamental distrust. Chronic illness is an attack on the self. Academic medicine can't shed light on the mechanisms that explain MCS It's important for practitioners and society to still meet patients with compassion and acceptance.

It was published in Aeon.