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Double-Blind Bind

Monday, February 2, 2015

A few weeks ago, I watched the movie Dallas Buyers Club. It was so helpful to see another person at another time with another disease trying to figure out how to keep going when mainstream medicine didn’t have good answers.

The movie was about the AIDS crisis in the 1980s. The main character was not intended to be an angel, but a guy who had both likeable and upsetting character traits and behaviors. The aspects of his character that saved him were that he felt very entitled, he was pretty smart, and he didn’t trust authority and institutions. That was enough for him to question what the doctors gave him, from his diagnosis to his prognosis to his treatment. He then went to search for something that worked.

I’ve read and heard many comparisons between the AIDS epidemic and the growing Lyme Disease epidemic. Many of them are criticisms of people with Lyme and their families, that they haven’t lobbied enough, that they don’t keep abreast of the scientific studies, that they don’t protest enough. People with AIDS, both in the US, initially, and throughout the world, well into this century, fought hard for treatments to be developed and for access to treatments once they were found. It was a life or death situation…and often, people were well until suddenly they were on death’s door. Everything about the epidemic was horrible. People with HIV were shunned and blamed. They fought not just for their lives but for acceptance within society. But there was one thing that was not in dispute: everyone recognized that they were ill.

The fact that there are still medical professionals, in fact, societies of medical professionals, that continue to claim that chronic Lyme Disease doesn’t exist, makes things much harder for people with Lyme. There is still no simple, accurate diagnostic test for the infection (or multiple infections if you include the other equally debilitating tick-borne infections that often occur together). The treatments are inadequate at best. Many of us have participated in protests. Many leaders have been lobbying for years. Most Lyme patients learn an incredible amount about the science that has explored, characterized and treated the disease. Some number of scientists and doctors have been trying to find reasonable, cost-effective, treatments or cures, despite the lack of funding and the attacks they’ve faced from insurance companies, medical societies and state regulating agencies.

People with tick-borne illnesses can survive for quite a long time. We end up very disabled. Very disabled. The treatments are expensive and don’t offer adequate relief from the severe pain, the chronic insomnia, the debilitating brain fog, the lack of mobility from joint and nerve problems, and the unrelenting fatigue. Families are focused on caring for their children or their adult dependents who suddenly can’t work, even though they more or less “look” fine. The amount of care required reduces our ability to focus on lobbying and other things that might help someday in the future. And still we persist.

I thought about all of these things while I was watching the movie. I thought about the recent successes, including congressionally-mandated funding for Lyme research that was passed in 2014 after over a decade of lobbying for a similar bill that was repeatedly introduced in Congress.

What really got me, however, was that Ron Woodroof, the main character in Dallas Buyers Club, went to Mexico and found something that worked to keep him going. In the end, no one argued whether the various treatments were working for him, only that they hadn’t been proven to work. Most importantly, there hadn’t been double-blind studies. This idea is one that has been in the news, on and off, since September, in relation to Ebola. Double-blind studies require that a control group not receive the treatment being tested. Tell that to a person who comes to you for Ebola treatment, with the fear of a very likely, imminent death in their eyes.

I was trained as a scientist. I understand the need for a control in an experiment. I understand why we need statistics. I even understand how important it is to test various substances for harmful, as well as healing properties. At the same time, I understand how statistics can be manipulated, how experiments can be designed in a way that discards data that contradict the hypothesis, and how profit can have a clouding influence on every aspect of an experiment.

When I watched the movie, I thought about how much a freak I feel like when I try to explain coiling to anyone who doesn’t already know. I try to explain that there are antibiotics, herbs, other alternative treatments, all along a road. Then, at the end of the road, if you drive off into a ditch, you’ll find a coil machine.

There are no double-blind studies. There are, in fact, no studies at all…at least not the credible ones that take place in laboratories and academic medical centers. There are only anecdotes and blogs, Yahoo groups and discussion boards, a few self-published books. There are people out there that have figured out how to get a lot better by using a coil machine (or other rife machines that produce equally strong electromagnetic fields). There are lists of frequencies to try. That’s about it.

I didn’t start out thinking I would go this route. I used conventional medicine prescribed by a Lyme literate physician and lots of alternative treatments as a complement to the antibiotics. I got as “better” as I was going to get, and it wasn’t good enough for me. It was at that point that I met someone who was using a coil machine and was having success. Then it became real to me, not just an internet scam.

I decided, when I started having more side effects from the antibiotics than perceivable improvements, that it didn’t matter to me if there had been double-blind studies with at least 2000 people (enough for statistical significance). What mattered was whether it worked for me.

A while back I read about the scientist who swallowed strychnine followed by activated charcoal. Professor Pierre-Fleurus Touery took a known outcome, no need to poison someone else with strychnine for a control, and showed that he could survive with little to no ill effects, with prompt administration of activated charcoal.

The conclusion of the anecdote is that for treatments that are only marginally effective, statistics are required to show any benefit. If a treatment works extremely well, lets say the mortality rate goes from 80% to 30% (as it does when standard Western medical supportive care is used to treat Ebola patients, even in the absence of an antiviral drug), then no control is needed because the control is the people who have already been observed with no access to that treatment.

I recognize this isn’t an apples to apples comparison, but the point is that treatments that work for well-characterized illnesses don’t require a concurrent control.

When it comes to Lyme Disease, there is a large body of literature, both in the academic medical field and in the less rigorously controlled world of patient reporting, and despite the supposed controversy about whether chronic LD exists, to know that patients suffer debilitating symptoms and continuing infection, even with the current standard and alternative treatments.

What we need is a new approach. I support the goals of the large Lyme Disease and tick-borne disease advocacy organizations that have pushed the government to use research to develop a more reliable test. That will help with future double-blind studies as well as with diagnosing people more quickly. But it isn’t enough.

It is time to break out of the model that says that drugs are the only solution we’re looking for. It is infinitely easier to take pills, powders, liquids, intramuscular shots, or IV liquids, than to sit at home with a machine for three hours a day. But if the drugs don’t work, if they leave the person with a continuing state of disability, which is the case for large numbers of people, then some other solution must be found.

For me, the solution was a coil machine. I didn’t care if it worked for everyone. I don’t care if it is ever shown to be effective in a double blind study. I only care whether it has worked for me. And it has.

The only control, the only comparison I can make, is to the years I was on antibiotics, and to the breaks I take in coiling. I assume that I don’t get fooled too much by a placebo effect because I don’t usually know what to expect. Or at least I didn’t for the first four years I was coiling. I’ve learned a lot along the way. I’ve seen different frequencies cause different herxes…and in the long run, get rid of different symptoms of the infections. I certainly don’t think a placebo would work better with the coil machine that I used despite my doubts than with the drugs that I had high expectations of.

I assume I still have the infective agents living in my body. I want desperately to eradicate them. Maybe I will. Or maybe I’ll have to have a coiling day once a month to keep the symptoms from coming back, once they’re all gone.

When people ask me for advice about what works for Lyme Disease, I tell them that I only know what worked for me. Everything else I tried helped me survive until I found the coil machine and while I was herxing from the die-offs it generated. Nothing else gave me the relief I’ve found, the healing I’ve found with this machine.

Like many other coil machine users I’ve spoken to, I wish a corporation wanted to invest in the technology, to develop a standard machine at a cheaper price that is easier to use. We’ve gone from lying on the couch in pain, unable to move, digest food, think straight or sleep at night, to people who have recovered their bodies, their minds and their lives.

I am not finished. I know I’m not. Even as I deal with the annual flare that comes at the end of January, I know I’ll be done with Lyme in a few weeks at most. Even as I begin coiling for Bartonella and making another attempt to get rid of it, I know that I’m better off than I’ve been in all the years since I got symptomatic and disabled. I know it’s about to get much, much worse for what might be a long while. But, more importantly, I know it’s going to get better.

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