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Doctors Said There Was No Cure

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A professor of medicine in Iowa was told that her multiple sclerosis (MS) would confine her to a wheelchair for the rest of her life. A girl in Washington State endured seizures for years—doctors could not pinpoint a cause, much less propose a solution. A boy in New York was ­diagnosed with a rare form of debilitating arthritis and given little hope of recovery.

But despite these seemingly hopeless prognoses, these people were able to improve their health and their lives. How did they do it?

When people are told that medical science has no solution for their health problems, some give up and accept their fates. Others, in their desperation, fall victim to quacks and con artists peddling ineffective and potentially dangerous fake cures. But a few manage to find treatments outside traditional medicine that seem to work. Some of these approaches may not have gone through rigorous clinical trials, so they have not earned the approval of mainstream medicine, but they are rooted in science.

There are no guarantees, of course. In fact, unproven medical treatments often turn out to be ineffective. But despite the unfavorable odds, unproven treatments still might be worth trying when doctors have no solution to a health problem…and the unproven treatment itself poses no health risks.

Journalist Susannah Meadows recently wrote The Other Side of Impossible, a book about people who overcame daunting diagnoses after trying ­unproven treatments and other strategies. She also is the mother of the boy from New York who, at the age of four, overcame polyarticular juvenile idiopathic arthritis.

Bottom Line Personal asked Meadows what we can learn from these stories about how to search for solutions when doctors offer no hope. Because she is a journalist, not a doctor, she is not offering medical advice. Instead she is sharing her observations and some of the steps she took that could be helpful to others…

• The people I wrote about in my book sought unproven solutions that have attracted the attention of researchers. People facing difficult illnesses often hear about unproven medical treatments, perhaps in illness support groups or on websites—and a smart response is to then investigate whether the treatments have received any interest from the scientific community.

It can take many years for the medical community to test and accept a new treatment. The people whose stories I tell in my book felt that they didn’t have time to wait. When my son was lying sick on the couch after taking his medication, which wasn’t helping his arthritis much, I couldn’t accept that this was our only choice. People in this position sometimes look into ­joining a trial to get access to cutting-edge therapies.

The Internet has made a lot of this work possible. You can look for websites, articles or press releases citing the newest research. For example, at PubMed, the National Institutes of Health’s free online medical research database, you can see whether anything favorable has been published about a possible treatment in a medical journal (NCBI.nlm.nih.gov/pubmed). Websites of nonprofits associated with various diseases also are good resources. They often will issue press releases regarding studies that they are currently funding to explore an intervention’s ­effectiveness.

Example: The Iowa professor I write about in my book recovered from MS after she changed her diet. It may sound unlikely that such an intervention could have such a powerful effect, but the National Multiple Sclerosis Society (NMSS) recently committed more than $1 million to studying her protocol—and someone searching online could learn this by visiting the NMSS website (search for “Dietary Approach”).

Search tip: When looking for trials of treatments relating to a given condition, search the names of the scientists who you see have produced recent research on the topic—because individual medical researchers often pursue the same topic of research in multiple studies.

• We talked over everything with our doctor to make sure that we were safe. Doctors are unlikely to advocate any solution that has not yet been put through clinical trials and been accepted by the medical community—but it still is important to keep your doctors in the loop if you want to try an unproven treatment. Doctors can’t offer much guidance about whether an unproven treatment will help you, but they can weigh in about risks.

Example: When I learned of another child whose juvenile arthritis appeared to have improved dramatically after gluten and dairy were removed from his diet—and fish oil, probiotics and Chinese herbs were added to it—I asked my son’s doctor whether these herbs and dietary changes were risky. We tried them only after we were ­assured that they were not. Our doctor’s main concern was that we keep our son on medication, which we did. (I already was aware of the risk that Chinese herbs can contain toxic heavy metals, so we found a source of herbs that were subjected to third-party testing. All supplements come with some risk because they are not regulated in this country—manufacturers don’t have to prove that the supplements work or even that they won’t hurt you.)

Some doctors are more accepting of these complementary treatments than other doctors. If my family faced a ­difficult illness again and found that our doctor was not open-minded, I probably would seek another opinion. One thing I’ve learned is that good doctors know that they don’t know everything.

• It’s right to be especially wary of cures that are being pushed by those who stand to make a profit. I always think like a journalist when approaching medical issues. A good source is not someone with a conflict of interest—in medicine as well as in reporting. In the alternative medicine world, there are plenty of scammers because there are a lot of people who are desperate for treatment that works.

• Diet-related solutions are promising. The microbiome, the population of bacteria that lives in and on our bodies, is among the hottest fields of medical research these days. These microbes are fed by the food we eat. If we don’t treat our population well—if we take unnecessary antibiotics and we don’t eat a variety of fiber, which our bacteria thrive on—we can end up with a compromised population. And an unhealthy microbiome is linked to all kinds of diseases.

Researchers also are investigating the potential connection between having a hyper-permeable gut lining, also called a leaky gut, and autoimmune disease. Eating gluten, for example, can cause the lining of the gut to become more permeable, which could allow proteins from food to escape into our bloodstreams, triggering immune-­system–­related health problems.

If the gut and its bacteria are indeed involved in a wide range of poorly understood health problems, changing one’s diet could potentially solve or reduce some of those problems. But because research into these issues is in its early stages—and because few physicians have much training in nutrition—there’s a good chance that your doctor will have little or no knowledge of possible dietary solutions.

Example: As noted earlier, our son’s arthritis treatment included removing gluten and dairy from his diet. Another child I wrote about saw a dramatic improvement in his ADHD symptoms after he changed his diet—under his doctor’s supervision, he tried an elimination diet, taking out eight foods and adding them back in one at a time to see which ones gave him a problem. A little girl’s autistic traits were less pronounced after she removed grains, starches, milk and any added sugar.

• The search itself may be good for your health. Trying unproven treatments could improve your health even if the treatments you try are found not to hold water. The placebo effect is well-established—when people believe that they are receiving medical treatment, their health often improves and/or their pain lessens. In one study, 62% of irritable bowel syndrome patients reported that their symptoms improved when they received a sham treatment from a doctor who projected compassion and confidence.

Also, the longer you keep up the search for a solution, the greater the odds that you will stumble upon one—and it even could be something completely backed by science. The mother of the girl in Washington who suffered seizures tried treatment after treatment, both mainstream and outside the box, without success. Eventually, in desperation, she took her daughter to a third pediatric neurologist. He suggested an MRI. The imagery showed a benign brain tumor—the likely cause of the seizures. In almost 10 years, no other doctor had suggested doing an MRI. The tumor was removed in the spring of 2016, and the girl hasn’t had a seizure since. If she is cured, it wasn’t just that neurologist who saved her—it was her mother’s determination to keep searching for a solution.

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Source: Susannah Meadows, author of The Other Side of Impossible: Ordinary People Who Faced Daunting Medical Challenges and Refused to Give Up. The book is based on her family’s quest to find a way to help her son’s arthritis when they were told he was unlikely to recover. She is a former senior writer for Newsweek. SusannahMeadows.com Date: August 15, 2017
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