The next meeting of the Make Yourself Healthy Meetup group is tomorrow (May 23, Thursday) at the Telegraph Ministry Center (5316 Telegraph, Oakland). Social time will start 6:30 pm, the meeting proper at 7:00 pm. It will last about 2 hours. Admission is $3, payable at the door, to cover the cost of renting the space.
The first speaker will be Robin Barooah, who will tell how he cured his RSI (Repetitive Strain Injury). What his doctors told him to do didn’t work.
I am a mother of five children. I live in Fremont, California. In 2009, my youngest child, who was three, was diagnosed with autism. The diagnosis came from her social and communication impairment and highly repetitive behavior. She did not play with other children. She had no imaginary play. She made no eye contact with anyone. She had no spontaneous language. She did not understand questions. Her language was restricted to repeating what she heard (echolalia). In other words, she didn’t use language to communicate. She could stack blocks for hours. She would line up toys and have a meltdown if you moved a toy out of line. Everything had to be according to her rules or she was in chaos. She had highly repetitive routines that would escalate into unrest or panic. For example, she would go to wash her hands, turn the water on, turn the water off, turn the water on, and so on. Each time through the routine she would get more upset that she couldn’t stop. These loop-like routines might last hours, typically ending because of exhaustion from crying. She also had episodes of absence (blank stares) that lasted 15-30 seconds.
My husband and I tried a number of popular therapies. We tried Applied Behavioral Analysis (ABA) for 3 months. She got worse; her loop-like routines occurred more frequently. We tried speech therapy for 6 months. It increased her vocabulary, but did not improve her communication in other ways. The third therapy we tried was auditory integration training. We did the full series twice, which took a total of 3 months. There was no improvement. Then she started going to a special-needs school, where each student is given an individualized program. At this point, she was 3.5 years old.
Around the same time that she started the new school, we started changing her diet. I had been looking at nutritional deficiencies associated with autism. As a result, we added green veggie smoothies (for example, kale, cucumber, cilantro, nuts, seeds, fruits, it varied with the season) to her diet, supplemented with a multivitamin, magnesium, B complex, Vitamin D3, Omega 3′s (EPA and DHA) and probiotic blends (a mix of pills from different companies, such as New Chapter and MegaFoods). Within three days, she began to look people in the eye and began responding to her name. Before the autism diagnosis, we had taken her for a hearing test, because of her lack of response to her name.
This encouraged us to think that diet was important. We eliminated gluten and casein (dairy) from her diet. Many parents had seen improvement after they made this change. These changes were often not large enough to make the children no longer autistic, but they did improve. Our daughter’s response was similar. Her social and communication skills improved, but she was still about a year behind her peers. She still had long outbursts and meltdowns. We were sure it was the new diet, not the new school, that caused the improvement because several times she had eaten gluten or casein at school by accident (e.g., pizza) and her language and behavior regressed. This happened about ten times. Twenty-four hours after these exposures, she was considerably worse. She wouldn’t be able to articulate words and her language comprehension decreased. She also became much more emotional and picky (e.g., had to take a certain route home). The regression lasted about five days.
These improvements encouraged me to read more about diet and autism. I read a few clinical studies – there were hardly any. On blogs, I read about parents’ experiences. On one blog – I can’t remember which one — I read a comment from a parent that he found that his son benefited from removing gluten and casein, and, importantly, MSG made his son worse. What idiot feeds his child MSG? I thought. I was wrong.
I have a Ph.D. in biochemistry, with an emphasis in protein chemistry, from UC Santa Cruz. I have spent 20 years conducting research and development on proteins for therapeutics and molecular diagnostic applications. Proteins are made of amino acids, the most abundant of which is glutamic acid. When a protein breaks down, glutamic acid is released. I discovered that I had been feeding my daughter plenty of glutamate. I started researching connections between glutamate and autism and convinced myself it was plausible that too much glutamate caused behaviors associated with autism, as well as other brain disorders. Suddenly I understood why removal of gluten and casein might help. Both proteins have a high glutamate content (= a large fraction of their amino acids are glutamic acid). Common types of food processing break down these proteins. For example, fermentation, ultra-pasteurization, adding acid (such as lemon juice), and adding enzymes (e.g., when making cheese) all create free glutamate.
I started looking into food labels. Glutamate can be hidden in many ways, I learned. For example, “natural flavor” may be up to 60% glutamic acid. Perhaps my daughter had a predisposition to glutamate sensitivity; my research revealed that many of us do. There are glutamate receptors all over the body, including the brain. For example, glutamate receptors in the pancreas regulate insulin secretion. To reduce the amount of glutamate in her food, I tried to remove all processed proteins from her diet. This wasn’t simple. Apple juice may have “natural flavors”. Toothpaste may have glutamate. Our new diet mainly consisted of organic vegetables, fruits, seeds, nuts, meat, quinoa, and rice. We stayed away from any product with processed soy, corn, or wheat (because of the processed protein). Corn on the cob or edamame was fine because they aren’t processed.
This was a huge shift in the family diet and was met with protest. My husband was hesitant because the advice from a team of neurologists had been to try behavioral therapy again. (ABA is one type of behavioral therapy.) They thought a better therapist might help. That was their main advice. They told us they hadn’t seen gluten-and-casein-free diets produce improvement.
In May 2010, we made the big dietary changes. After we started the new diet, my daughter never again had a meltdown. She had had one the previous week. About a month later, at the end of the school year, we were contacted by the special-needs school. They said she had improved so much that she should go to a mainstream pre-school. At this point she was almost four. Her language and social skills quickly caught up with her peers. Of my five children, she is the most social and outgoing. Today, at 6 years old, she attends a public school kindergarten. At a September 2012 parent-teacher conference, her kindergarten teacher was shocked to find out that she had been previously diagnosed as autistic.
I decided to make it my mission to educate and raise awareness of the amount of free glutamate in our food and the health ailments associated with it. The name of my mission is Unblind My Mind. More information can be found at unblindmymind.org.
Katie spoke about this at the first Make Yourself Healthy Meetup.
The next meeting of the Make Yourself Healthy Meetup group will be May 23 (Thursday) at the Telegraph Ministry Center (5316 Telegraph, Oakland). Social time will start 6:30 pm, the meeting proper at 7:00 pm. It will last about 2 hours. Admission is $3, payable at the door, to cover the cost of renting the space. The first speaker will be Robin Barooah, who will tell how he cured his RSI (Repetitive Strain Injury). The doctors he saw were no help.
The first meeting of the Make Yourself Healthy Meetup group happened last night in Berkeley. It went great. About 15 people attended. We heard four fascinating talks — five, if you count mine. About 10 people wanted to talk so there was far more material than time (the meeting lasted about 2 hours).
Here are brief recaps of the talks.
Me. I explained why I started the group. I described how I came to believe that non-experts can discover important things about health that health experts, such as doctors, don’t know. These non-expert discoveries deserve more attention than they would get on a online forum (e.g., a MedHelp forum about acne). They can help people with other problems and can encourage people with other problems.
Katie Reid. After her youngest child was diagnosed with autism, she tried many things that didn’t work. She tried removing gluten from her daughter’s diet — a common treatment — and that made things somewhat better. The partial success encouraged her to look further at food. On someone’s blog, she came across the idea that MSG (monosodium glutamate) can cause autism symptoms. To her surprise, she learned that MSG is in many things, including toothpaste and juice, without explicit statement on the label. When she removed all MSG from her daughter’s diet, her daughter greatly improved and now, three years later, attends class with normal children. All of her autistic symptoms are gone. Katie herself felt much better when she stopped eating any MSG. She lost weight and a low-grade headache disappeared. She has a website and a video about this. Here is a video about this by someone else.
Anonymous. He is 29 years old and has struggled with depression, anxiety and lack of motivation. No long term progress in therapy. Yoga has helped. He found some benefits from meditation, but to get the benefits requires consistency and consistency requires hope, which I don’t always have. He started thinking critically about what he eats. Read Eat to Live by Furman and Disease-proof Your Child. Eating whole foods plant-based lowered his blood pressure to 90/60, His weight went from 170 to 155 and is now in low 160s. (It was 160 when he was 19.) He has food addiction and technology addictions, demons that he is battling. Other attendees suggested six things he might try, such as eating more animal fat.
Kylene Miller. She spoke about the value of anti-oxidants. She became a Type 1 diabetic at age 5 and has been sick a lot in her life. She met Dirk Pearson and Sandy Shaw, who told her to eat a lot of anti-oxidants. She started eating large amounts of Vitamins E and C. Then she started trying get her antioxidants from food. She discovered healthy chocolate — cold-pressed so that the anti-oxidants aren’t destroyed — made by the Xocai company. It has a huge ORAC (oxygen radical absorbance capacity) score. She had gastric paresis. Four years of throwing up first thing in the morning. She had stopped taking lots of antioxidants. After she started taking them again, her gastric paresis disappeared. She is a distributor for the chocolate. She passed out samples of the chocolate.
Janet. When she was 19 (she is now 22) she suddenly felt very tired most of the time, even though she was sleeping 12 hours per night. She decided what tests she wanted, but her doctor would not order them. After her doctor gave her the blood-test-order form to bring to the testing center, she checked the boxes for the tests she wanted. Three supplements have been especially helpful, including isocort and progesterone (both OTC, over the counter). You can listen to her talk here (thanks to Jane Cho).
I had worried that too few people would have stories to tell, but one attendee lived one block away She had high blood pressure and had lowered it without medicine. I wanted to videotape the talks but during the second one the camera battery died — and, anyway, I was doing it wrong, someone told me. I asked whether the next meeting should be in one month or two months and everyone voted for one month. We need a venue that permits longer meetings.
Thanks to Dave Lull and Ashish Mukharji.
As I blogged earlier, I’ve started a Meetup group called Make Yourself Healthy. It is about doing better than expert advice. Doing better than taking prescription drugs for a problem, for example. The first meeting is Wednesday, April 24, 6:00 pm to 7:30 pm, in the meeting room of the North Branch of the Berkeley Public Library (1170 The Alameda).
I’ve found ways to improve on expert advice. I’ve found new ways to lose weight, sleep better, and so on. More to the point, many other people have done this. I wrote about some of them for Boing Boing. The specific things they learned about how to be healthy — for example, Dennis Mangan’s discovery (or confirmation of someone else’s discovery) that megadoses of niacin eliminated Restless Leg Syndrome — are not just important in isolation but also as part of a pattern: showing that such a thing is possible. Their solutions were vastly better than what their doctors recommended. This is counter-intuitive. We don’t see this in other areas of life. We don’t see amateurs building better cars than professionals, for example. But it’s happening.
I believe two things about this:
1. The solutions will generalize. What Person X discoveres improves her health turn out to help with other problems. I started drinking flaxseed oil because it improved my balance. It turned out to improve my brain function measured in other ways. And it turned out to improve my gums. I don’t have lichen planus or geographic tongue, which xylitol can cure, but I am taking xylitol because I believe (backed up by research) it reduces plaque.
2. The methods will generalize — what you do that finds a solution to Problem X is worth trying with other problems. With me, self-experimentation is an example. When studying my acne, self-experimentation showed how to better than my dermatologist’s advice. Later, it helped me improve my health on other dimensions (weight, mood, sleep, etc.).
The Make Yourself Healthy Meetup group can spread the solutions, the methods, and the knowledge that such a thing is possible. It can encourage people to try to improve on expert advice and help them do so.
Encouraged by the success of the Quantified Self Meetup group, I have started a Meetup group called Make Yourself Healthy. It is about how non-experts — the rest of us — can improve on expert advice about health. The first meeting will be April 24 (Wed.) in the meeting room of the North Branch of the Berkeley Public Library, 6:00 pm to 7:30 pm.
The group is about solving your health problems yourself, before or after mainstream medicine fails to help or provides inferior solutions. Access to health information via the Internet makes this more and more possible; so does new technology, which make it easier to measure health problems.
The first important practitioner of Make Yourself Healthy was Richard Bernstein, a New York engineer with diabetes, who in the 1960s bought a new machine that could measure blood sugar with only a single drop of blood. Bernstein used it to measure his own blood sugar many times per day — in contrast to getting it measured once a month at a lab. What he learned from frequent measurements allowed him to stabilize his blood sugar level, which doctors’ advice had never managed to. His health greatly improved. His promotion of what he had done led to the glucometers you can find in any drugstore. Nowadays diabetics take self-measurement for granted.
I have managed to improve my health in many non-standard ways. Acne, sleep, mood, weight, and brain function, especially. On the face of it, you might think: He did a lot of self-experimentation and discovered cool stuff. At first, that’s how it looked to me. I wrote a paper called “ Self-experimentation as a source of new ideas“. But that’s misleading. Self-experimentation wasn’t new, it was ancient. Yet my discoveries were quite new — quite different from what people already believed. What really led to my successes was: 1. Better information. Before the Internet, I spent thousands of dollars on a UC Berkeley library service called BAKER, which photocopied journal articles that I requested by phone and delivered the copies to my campus mailbox. Xerox machines made this possible. 2. The prison of professional science. There are so many things that professional scientists (such as medical school professors) cannot do. There are so many ideas they cannot test. They have left a lot to be discovered and it turns out that non-scientists (such as me — I was not a sleep researcher, a mood researcher, etc.) can discover at least some of it. In other words, I wasn’t successful just because I did self-experimentation, I was successful because I did wise self-experimentation. I chose wisely what to do.
Behind this Meetup group is my belief that anyone who does this — tries to do better than expert advice — probably can teach and learn from other people trying to do the same thing, even if their health issue is different from yours.
If you are coming to this Meetup and have experience (successful or unsuccessful) trying to improve on expert health advice, and are willing to share your experience, please contact me.