Choosing Doctors and Healers
The best way to find a doctor who is Canary-friendly is to ask other Canaries. Online groups can be helpful in your search. One Canary told me, “My doctor now finally believes in MCS but she’s not a very good doctor.” If you have few medical needs, that might be enough for you like it is for her. As someone who has had hundreds of medical specialists, healers and PCPs for many reasons pre-MCS, I found that only 10% were helpful for me, 50% harmed me, and the rest were baffled. Yet most people put more energy into finding a good hair stylist than they do a doctor. We all know that not everyone is equally intelligent, hard working, passionate, educated, ethical, organized, etc. in their field no matter what it is. (Think of how much effort and time it takes to find a good, trustworthy car mechanic when you move.)
The first appointment in the morning keeps you safer from fragrance warn by patients. But check when they clean and with what when scheduling an appointment.
There are about five people who understand MCS very, very well. There are millions of people with MCS. The odds are you will never see a MCS specialist. You will be your doctor, in some lab experiment seeing what works for you. Like with every item of clothing or furniture or housing, it is hit or miss for all Canaries. It isn’t helped that we all have various differences so what works for me will not work for you, aside from exposure – avoid it. Someone called this the “wasting money disease” which is nicer than its other names “the homelessness disease” and worse “the suicide disease.”
After that, unless you see one of the few people with the scientific brains dedicated to MCS research that are getting real physiological results, you’re on your own. No one is having miracles, though. I have a naturopathic doctor with MCS and a DO who has several patients with MCS. The ND got me the main treatments: B12 methyl injections, glutathione, burdock and dandelion root, milk thistle seed, Epson salt baths, castor oil packs on liver, digestive enzymes, and the three homeopathic UNDAs for liver support and detox. It is what she uses. My DO understands that prescription drugs and herbs are likely to have bizarre side effects. Neither are MCS experts. Although they knew enough to check my blood work for heavy metals, realize that my liver was damaged enough from MCS that I had reactive hypoglycemia and my severe PMDD was due to my liver not cleansing out my own hormones. It was a lot of trial and error and work by myself as well.
If your doctor is allowed to spend more than 10 minutes with you, having your doctor read this may help you: International Scientific Declaration on EHS & MCS, Brussels, 2015. Following the 5th Paris Appeal Congress that took place on May 18, 2015, at the Royal Academy of Medicine, Brussels, Belgium. http://www.avaate.org/IMG/pdf/statement_en_definitif.pdf
Don’t let fear make you spend a lot of money on anything that sounds too good to be true and never give into the pressure that magical thinking will make you better because it is a trail to self blame when it does not work. This illness has a lot of no win type situations, loneliness, fear, confusion, and ambiguity with it. Working to psychologically handle that stress and avoiding exposure are the only two things every Canary with whom I have communicated says helps for sure. There are probably supplements, dietary changes and detoxifications that will help you, but I have no idea what ones. I listed mine above and they are rather standard but if they will be safe for you, I don’t know.
This said, sadly, you will probably need a doctor. There is no cure for MCS, but if you break an arm, have a miscarriage, or catch pneumonia, a doctor who understands the needs of Canaries is a life saver. That doctor can be your advocate and ally with specialists, hospitals, and social services. If you need medications or have other medical needs that require a doctor, having one who respects your needs is vitally important. My real need for a doctor is to sign papers for getting and keeping social services.
My criteria for doctor:
1. They must be at least as intelligent as I am. (My IQ is 156.)
2. They must be passionate and excited about their field. (Then they will always be learning.)
3. They must treat me like an equal partner with respect. (If I leave feeling bad about myself and dread the appointment for weeks, how healthy is that? If they do not listen, how can they help me?)
It’s a tough job description, but once I refused to lower my standards, I eventually found good people whom I trust with my life. And that is what we are doing, trusting people with our lives. We give an honor to a doctor to treat us. Doctors must understand that. They are the lucky ones: They make money with other people’s quality of life at stake.)
I check the pens of the staff. If they have drugs’ name on them, I know they are in the grip of pharmaceutical companies. One PCP I had had so many drug brochures in her waiting room, it was like a menu. If you read articles by former drug company reps, you will be amazed at the psychological games they are trained in to make doctors think they are thinking for themselves. “Anatomy of an Epidemic” explains in depth the link between the APA, NAMI and Big Pharma’s money.
I also refuse to take any medication not on the market for at least 7 years. Those years are the “beta tests.” I was put on many drugs I didn’t need which are now off the market that have damaged me. (I cannot benefit from any class action lawsuits because I was on other medications as well.)
Types of Medical Providers
Please remember that right now the medical system is at its most understaffed, overworked, and underpaid, and people are in terrible moods. It’s not your fault and it does not give anyone the right to be rude to you. I have formed so many relationships with doctors that I have learned how upset they are with only being given 15 minutes per patients and fighting to have insurance to cover services needed. Many have told me “I did not go to med school for this.” Two broke down in tears. Some opt out of taking insurance all together for this reason. As my old psychiatrist, whom I adore, says, he cannot do his job in the time allowed by insurance companies. Also because there are so many crazy rules with each insurance company, practices usually are owned by their billing management company! So those accountants dictate your health care. Doctors don’t have the time to fight with insurance companies to get your needs covered like they once did. They don’t even have time to read results of tests other doctors did. (One reason I strongly suggest having a binder with copies of all tests, medications taken and the side effects, all previous doctors, etc – very few doctors will do that anymore, including Naturopaths. Documentation also helps you win a disability case.) One neurologist I saw was given 5 minutes per patient. FIVE minutes per NEUROLOGY patient. He was a mean and apathetic doctor, but I heard two years ago he had been one of the best, loved by his patients. Then his billing management company changed. So keep in mind that allopathic doctors and nurses are as miserable with this system as you, the patient, are. Most PCPs get only enough time to write a prescription or a referral. The more complex your needs, the worse they often feel about how short changed you are – and they often take it out on you. I have had two PCPs turn me down as a patient because it wouldn’t be fair to me to give me such inadequate service – and this was before MCS.
However, my compassion and empathy for doctors and nurses is tempered by the fact that I don’t see them taking any political action to improve their situation. If they don’t care enough to organize and work for a better system, like with all people who just complain, I stop caring. They chose to accept this.
NDs are naturopathic doctors who have the training of an MD but with a focus on naturopathic health solutions. They can write very few medication prescriptions. In some states they are illegal; in others insurance covers them. Their training includes herbs, minerals, homeopathy, baths, diet and much more. Most have a specialty but often work as general practitioners. My ND specializes in women’s endocrine issues and autism but she has MCS herself. Don’t expect most NDs to be MCS savvy. The newest ND treatment for MCS focuses on colonics and infrared saunas, of which I have no safe access!
DOs are MDs with an extra 300-500 hours training in muscular-skeletal training and usually more open minded than MDs. NPs are nurse practitioners, who can write prescriptions and take care of many medical needs. PAs are physician’s assistants. I had terrible luck with NPs and PAs pre-MCS. I was too far of the box already for most MDs and NDs, and NPs and PAs were in far over their heads and I got hurt. Now with MCS, I have no idea who to trust. Aside from my body – me.
Due to mild Cerebal Palsy (which has aged me overwhelmingly fast) giving me a non-text book body, I have had bad experiences with chiropractors and physical therapists. The most likely place for an adult with CP to be injured is at PT. A chiropractor I trust told me that the school a chiropractor attends determined a lot about their usefulness. Some are one trick ponies and others do not know they are specialists and tell people they can cure cancer. The variety of attitudes in chiropractic work is huge. Not all health care practitioners are alike so include your gut instinct as part of the choice making process.
Homeopathy often requires that persons with MCS detox first. There are three UNDA formulas for that, UNDA 1, UNDA 20, and UNDA 243. Sadly they are in an alcohol base, but NDs often mention them. Homeopathy is very different from Allopathic medicine and I strongly suggest working with someone well trained. In the UK it is very popular especially with veterinarians and only recently did their national health care stop covering it. Since farm animals don’t have the “placebo effect” and farmers make their living off healthy animals, I think homeopathy does work. I take herbal medicines, too, but as MCS tends to trigger or worsen allergies and intolerances, most herbs are no longer safe. I have a very poor sense of smell and aromatherapy worked great for my health needs but they really impair my functioning now. This is very common with MCS.
Some Canaries see someone trained in kinesiology. Kinesiology is also called muscle testing. For some people, kinesiology helps them learn their intolerances. Dowsing ingredients and products have helped some Canaries, although not others.
Holistic vs Western Allopathic Healers
Luckily MCS is not like other neuro-endocrine or neuro-immune disorders or “mystery” illnesses where there are hundreds of snail oil salesmen, books, diets and supplements cruelly preying on people’s desperation. There are only a dozen (LOL). If there was a cure or a treatment that helped all or even most Canaries, we’d KNOW. Just like anyone with any chronic illness, we are the experts in our health. (This is why other people can be very annoying with their well meaning advice.) The only proven treatment that works is DO NOT GET EXPOSED. (I call this a minimalist cure. I have been known to joke I do involuntary simple living.)
If you read about someone’s experience with a “cure” online, they may be a paid shill for the “cure.” (I was a journalist and ask the who what when where why and how behind anything.) You don’t know who people really are unless you know them. This is a big problem with researching on the Internet. Please keep this in mind. People are paid to discredit some treatments and support others. Without knowing the person in person you can never be sure.
Having worked in the New Age holistic sector, I know firsthand how many snail oil sales persons there are and have seen hundreds of miracle fads come and go. I am in the awkward position of knowing that neither allopathic Western medicine nor holistic medicine is the answer.
Both have many modalities and many dogmas. Some MDs I have seen were far more open minded than most holistic healers. The lines between the two are blurred now. Holistic healing bothered me because everything was my “karmic” fault or a “life lesson” or other punishment – the holistic healing never saw the whole picture of my environment. I didn’t need a new spiritual paradigm of self-hate. Also holistic healers were usually one trick ponies, with only one modality. If it didn’t work, it was my fault.
When I was a child holistic healing was about listening to my body, but now it seems I am supposed to listen to the healer and the mega-business that has sprung to life. I look for people who can say “I do not know” and refer me to who does. Like many therapists, holistic healers often came to their calling to seek help for their own suffering and project it on their patients.
Please use discernment, not desperation, as your healing guide. Many of you probably hate doctors, as do I, and I have seen that cause extreme gullibility for anything that says “natural” “holistic” or “alternative.” Those words have no legal meaning. Also in some states anyone can hang a shingle with no training at all. When I worked in the New Age holistic world I saw people do anything for money, lying about their qualifications and severely hurting sick people.
The most common side effect of holistic healing is shame and terror. You probably cannot afford the treatments recommended and may be scared because of this and feel that you are failing. There are treatments for living with AIDS but kids in South Africa are not going to get them due to socio-economic reasons. Keep that in mind before you beat yourself up.
Until more data is released, I now stay away from anything new, be it allopathic medications or holistic treatments. For example, I won’t take any medication that hasn’t been on the market for 7 years if possible. It is still in its beta test period and I already have been injured by new drugs that now rarely used or were taken off the market back in my “compliant patient” gullible days.
I also demand facts, not “case studies” and anecdotal evidence. I was a journalist for the largest newspaper in Canada and before that worked freelance. In my first days of that budding career, I was a fact checker for a neo-con environmenral columnist. (Yes, they exist… sorta.) My job was to find facts to back up his insane ideas. I’d find 300 studies saying he was wrong and literally one story remotely related to his point and he’d use that as his “proof.” From this experience of finding the news that fits the crazy man’s opinion, I learned to check everything, including who funds the studies. I demand transparency.
Health care is big business and holistic isn’t any better than Western. A compounding pharmacy tested my famous, expensive supplements and found illegal problems like my turmeric was dyed orange cellulose and my multi vitamin had no vit D even though it said it did.
My Personal Solution
I demand whole-istic health care, which sees the whole world as part of my health. I cannot control the whole world. But I do know that if I could, I would not have MCS anymore because chemicals would be gone. So from my point of view, my relationships, air quality, political decisions, corporate powers, my socio-economic situation, sexism, weather, media, my diet, my medications, meditation, earthquake fault lines, art, prayer, activism, the ozone layer, how other humans treat me, having safe housing – It’s whole-istic to me. No one part alone will solve the problem. This is for me a political illness, not merely personal. CEOs and governments are knowingly harming me.
I tell people that I want what works for me, who cares where it came from? It has cost me (bad) friends to not stick with their dogma. My two best acupuncturists who were trained in med school in Russia and China both told me I cannot handle acupuncture. It is too aggressive, being the Chinese medicine equivalent to surgery. But finding an acupressurist is nearly impossible. Reiki wrecks my CNS and feels incredibly invasive and far too hot for me. (I respond the same way to computer monitors and suspect I have mild EHS.) My instinct is to hit the person and run. An energy work expert and author said this is common, especially if you have ADHD or inflammation because Reiki is hot energy. Another healer said that psychically sensitive people often cannot handle any energy work. But most Reiki Masters I meet swear it is one size fits all. Meanwhile, Mom loves Reiki.
I just share this so people understand that there are many different types of healing and not all modalities work for everyone. People ask if I am against medication. I am against the ones that make me sick and like the ones that make me feel better. Do not give into the pressure to “pick a side” or throw babies out with bathwater. Flower remedies make some people with MCS sick. Medications make some people with MCS sick. Listen to your body, not a book or website. An awesome psychiatrist once told me that doctors need to listen to their patients, not drug brochures. You do the same!
Anyone who promises a one size fits all cure is a scary crazy person. If they say “This may help you but it is experimental and some people don’t get better” before you pay a lot of money, then they sound pretty decent. A lot of different things help different Canaries. Anyone who says they know what the cure is aside from no exposure is lying. If they say it might help you, they are probably telling the truth. Holistic health is now a cash cow and many good ideas are being used by unethical people. If it seems I harp on this it is because that when people realize allopathic Western medicine cannot help them very much, a sick person and their money are soon parted. As I grew up with alternative medicine and worked in the field, I have a different perspective. We are vulnerable and often desperate. A lot of allopathic and holistic things may help you. What I see as the biggest hurdle is the arrogance and lack of compassion from practitioners of both. There are good medical and healing people out there, but in my experience the odds are against you in finding them easily and even then they won’t have enough time for you. Please stay safe and spend your money on the sure thing: avoidance and emotional self nurturance.
(Discloser of my Opinions: I had severe copper poisoning and extremely high estrogen levels along with reactive hypoglycemia which caused severe mood swings. That was on top of mild MCS which came out as severe vasomotor rhinusitis (nonallergic sinus problems caused by chemicals, dust, hormones and humidity) and sudden crying jags with cognitive loss when in plastic tents, at the chemical ridden school or some friends’ homes (I had a 1970s hippie health mom and bathed in a creek with Dr Bronners), or when with men who used fabric softener. I saw 13 psychiatrists whose medications induced two suicide attempts – a “coming of age” ritual for my generation is the “Zoloft suicide attempt” – and gave me tardive dyskinesia, weight gain, stupidity and NO HELP. I am sure the 12 drug cocktails they had me on are responsible, along with the MCS from birth via my parents (who were rural in the age of DDT) and the 16 months Carbon Monoxide Poisoning which pushed me far over the edge into Universal Reactor, for my MCS becoming so terrible. I also “have ADHD” whatever that means – ADHD never was a problem in society until school was required in the 1950s and set up to prepare people for factory and office jobs and seems to be an asset in gatherer-hunter societies – which doctors did not know children with straight As or adults could have, especially women, which added to their confusion about what was going on within me.
Add the traumas that all humans have – do not buy into the “trauma manifests as MCS, FM, CF etc” BS because all humans have trauma and not all humans have MCS, FM, or CF – especially women in a patriarchal society, the doctors had no idea what to diagnosis me with, yet were willing to pour drugs into me and almost killed twice. I do believe that the patriarchy harms men as much as women but men haven’t had much luck in consciousness raising. 1 in 3 women experiences sexualized violence while 1 in 5 men do, most of both genders before age 18, and add to that dysfunctional families, addictions, domestic violence, accidents, poverty forcing people into violent neighborhoods, war, bullying, death of a child or parent – NO ONE is trauma free. Certain traumas with certain personality types cause PTSD but not all. We all cope differently. I have no DSM symptoms of PTSD although I have had over 50 near death experiences, most at the hands of humans I trusted. So please do not buy into the DSM, the 100% unproven idea that there are bio-chemical imbalances in the brain that cause “mental illness.” There is no science in psychiatry.
On that note, a prominent neurologist and other doctors have told me that with the new technology neurologists have learned they know far less they than they thought. For this reason they decide everything they don’t understand – which is almost everything they thought they understood – is labeled “psychiatric” when it is probably beyond modern neurology’s scope. However, ADHD and other neurodiversities like dyspraxia, autism spectum “disorders” etc seem to be on the rise caused by different environmental factors, especially heavy metals. Much of what is known about MCS and FM and CF comes from autism – and cancer – research, the other two “illnesses” on the rise. In the treatments that I have seen cure my friends’ children of autism, each was totally different, giving credence to the idea that autism is a symptom, not one disorder. Gut health and heavy metals seem to be common in the treatments I have seen work, yet have friends where nothing works for their children.
However, I put all the modern epidemics under the Environmental Illness label: asthma, cancer, autism, FM, Lyme, diabetes, etc. We know that 70% of children tested under fluorescent lights test positive for ADHD. No child has tested positive for ADHD in “green space” ie where humans normally work and live. I refuse to take any psych drugs, for example, unless given by a doctor I know that knows the dangers, is anti-BigPharma, sees them as short term solutions and will come to my funeral if they screw up and I like many commit suicide. In short, if they want to mess with my brain, they better LOVE me.
Read Robert Whitakers “Anatomy of an Epidemic” to learn the completely unscientific history of the DSM and psych meds and the horrors now unleashed. In the psychiatric survivor community is the term “multiple medication sensitivity” and it seems very linked to MCS. Mainstream medicine now talks of “chemical and/or drug sensitivities” as one issue.)