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I don’t expect readers to be as interested as I am in finding causes and cures for this disease. But what I’m doing here is constructing a model. If the model works for this disease, for me, there is no reason it can’t work for all auto-immune, environmental and other complex diseases, for any individual, if they follow the same process and tailor it to their personal situation. This is all part of my learning and discovery about how to deal with complex problems, starting with Let-Self-Change, except in this case my interest happens to be personal. I’m using this public diary to chronicle my self-experimentation because I’m learning as I go, and because my readers have already provided over 100 ideas and some fascinating hypotheses to consider — and in a lot of cases it’s clearly personal for them too. It is hard to avoid the impression that
I don’t expect everyone to ‘buy’ the idea of self-experimentation (though I would encourage skeptics to read Seth Roberts’ articles before dismissing it). Learned helplessness runs deep in our society, and those who suffer from it will never accept the legitimacy of self-experimentation. Acknowledging the utter inadequacy of the well-entrenched and massively expensive health system/medical profession/Big Pharma oligopoly to address the most serious and fastest-growing illnesses in our society is terrifying, and some will dismiss this acknowledgement as an emotional political or spiritual position rather than a consummately rational one. But for those who see the legitimacy (and urgency) of self-experimentation as a means to improve our personal and collective wellness, this article offers the first elements of a model that might improve its effectiveness. I think this model needs to be based on a series of principles, that guide and inform the imagining of hypotheses about wellness, the determination of appropriate tests and self-experiments of those hypotheses, and the interpretation of the results of those tests and self-experiments. Here is my first cut at a set of such principles.
So here is what I’m doing as Phase One of my self-experimentation process, in search of the causes and hence the prevention and cure of ulcerative colitis. This Phase is modest — low-hanging fruit experiments with low risk and (based on other patients’ experience and some medical research) high likelihood of effectiveness. This Phase is also unlikely to significantly test my three initial hypotheses. That’s the role of the later Phases, which will include some more novel and even controversial (but still rational and defensible) self-experiments. Because we’re talking about complex systems (i.e. the human body), proof of a cause or cure will be impossible — there are too many variables and unknowns. But I expect there will be compelling evidence of the probability that the causes, cures, treatments and preventatives that appear to apply in my case (and the cases of other self-experimenters) have broad applicability for our whole society. I think that’s enough. Here’s Phase One:
So there you have it — the principles that will guide my self-experimentation program, and the first phase of the program. I won’t bore you with the details of how I’m going to ‘separately’ test each of the ten elements of Phase One in such a way that I know what’s working and what isn’t — I’ll be describing this in more detail in Seth Roberts’ self-experimentation forum, and I’ll provide a link when I’ve done so. Seth is also considering me as a case study for his upcoming book on self-experimentation, and I’ll keep youapprised of details on that as well. In the meantime, your comments are welcome. |
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Dave … I wish you the best with your experiment and I look forward to seeing how it goes.
Oh, Dave. I’m dealing with a similarly elusive issue – an autoimmune disease that manifests itself primarily through digestive woes – and I’m hugely empathetic to your process. I love the way you’ve taken responsibility for your health in this way, and like Dean I’m eager to see how things unfold.I can offer only a few gentle comments about my own experience. I, personally, avoided the “self-experimentation” approach — or at least that particular label. I value science tremendously, but part of what I gained in an earlier embodied wrestling match (I struggled with addiction in the past) was an understanding of the value of entering into and being one’s body, rather then disidentifying and distancing oneself from oneself. What my disease has taught me is not cure but care; it’s taught me to treasure my energy and to listen so astutely to what it is I need and want and crave in any given moment; it’s taught me how to be sensitive to stress; it’s taught me how to attend. (What’s wonderful about this is that I now have so much more stamina than I ever did before, and that my health as a result is excellent . . . but this doesn’t matter as much.) I suppose my mere point was that cure is important, but more important, from my perspective, is what’s learned as a result, and not learned from a scientific standpoint, but learned personally. I think you’ve said all this in your post. I’m not sure I’m adding much that’s new. All I wanted to was encourage the care and to listen to the message and allow the healing. The difference between experimentation and exploration might be mere semantics, but to me it does feel different. I suppose I just wanted the reminder.Be well.
Dave,Please look at the Crohn’s disease section at Krysalis.net Dave Gregg is a good friend, and an extremely competent scientist/researcher formerly at Lawrence Livermore Labs.Here are the linkshttp://krysalis.net/crohn.htmhttp://krysalis.net/crohntest.htm
Re: #2: Years ago, I heard from an inspired dentist about a book by Weston Price, “Nutrition and Physical Degeneration.” It was out of print then, but I think it’s available. I’ve only read about it, and some excerpts, but think you might appreciate his method… collecting data on peoples who still ate natural diets. There was a lot of variation among the diets, not so much within each one, but they were completely unrefined. And none of the groups had our issues with degenerative diseases. Re: #5: This reminds me of the way babies meet the world perched (since they can’t walk yet) on someone’s hip. They have no idea what’s coming, but usually are ready to meet whatever it is with full enthusiasm. Can you arrange to hang out with any babies? I may check out some of the things you’ve mentioned, too. In the meantime, after one of your earlier posts about your diagnosis, and how you had been exercising… I started walking more, usually in the evenings, in addition to the smaller walks to & from train and work. My own self-experimentation, and I think it has had have an effect, especially if I pay attention to my posture. I think it helps tone abdominal muscles. Sounds like a good plan– just be gentle with yourself.
I just read and bookmarked Rajiv’s links, too. There is the ring of truth in them. But I think I need to get another opinion before I try Gregg’s suggestions. Unfortunately, I have to travel soon, and may not be able to do anything before then.
Karen,You can always call David Gregg. He is quite willing to talk about his discovery process. His phone number is on his site. He is a retired chemist from LBL. He is 70+
Thanks, Rajiv! I actually sent him an email last night. I’ll wait and see if he responds to that before trying to call him.
Our prayers are with you. Keep up the fight.With metta, David
Thanks everyone, for the kind words, advice and links. I’m feeling much better, and started the Phase One experiments today.
I love your site- its a so full of wisdom… so your illness has me worried…I’m not sure what you are doing in the way of diet as therapy, but I firmly believe most all of the modern chronic ailments can be traced to post palealithic diet changes. Not sure if you are aware of Leon Cordain and Stanley Eatons extensive research on the the composition of current hunter/gatherer diets, and the biochemical differences and their effects on metabolic markers of disease and inflamation. Please check-out their website, http://www.thepaleodiet.com/ he has full pdfs available of all his published peer reviewed papers there… take care of yourself- please
Dave, Awesome that you are taking charge of your medical care, as opposed to being a passive recipient. Have you ever checked our Ray Kurziwell’s writings about how he reduced his diabetes symptoms? Seems like right up your alley, as far as a methodology.
Dave,You may also consider adding L-glutamine to your diet.Here is the google scholar search and an article Glutamine and the preservation of gut integrity.
The link to the article is here
Good luck Dave with your attempt to concur your IBD. I have Crohn’s Disease myself and would like to welcome you and anyone else affected by IBD to join us at http://www.crohnsforum.com . I know we would all like to watch and be aware of your experiment (as even for those who may not believe in it, it gives a chance to see someone’s current attempts with it).
Hi Dave,I suggest two ways of helping your body to cure itself:- the simplest is to drink water and to stop drinking dehydrating fluids (coffee, black tea)- the second is meditation since it increases blood circulation and body awareness and reduces concerns. You can start both now. My feeling is that your approach may be too complicated and too analytical. Please read “One Small Step Can Change Your Life
Experts aim to put worms to workA world conference of parasitologists in Glasgow is asking: Could a worm a day keep the doctor away?Scientists are looking at parasites to treat allergic conditions such as asthma and inflammatory bowel disease.It is one of a range of issues to be examined by 2,000 delegates from 88 countries at the six-day conference on parasitology and tropical disease.Treating malaria, which kills three million people a year, with new drugs is also on the agenda.The International Congress of Parasitology got under way on Monday.Dr Mike Barrett, an expert in parasitology at the University of Glasgow, said allergic reactions are reaching epidemic proportions in the western world because we live in “super-sterile” conditions.Scottish leaderIn the developing world, allergies are “very rare”.He said: “Parasites depend upon their hosts in order to survive.”But to survive inside us, parasites must avoid the efforts that our immune system makes to destroy them.”Many parasitic worms have therefore developed ways of dampening down the inflammatory immune responses that are also responsible for many of the symptoms of allergic disease.”The results of recent clinical trials using worms to treat patients with inflammatory bowel disease will be presented and discussed.”Dr Barrett said Scotland is a “world leader” in researching and treating tropical disease.An exhibition at the Glasgow Science Centre shows how Scottish investigators in the 19th and early 20th centuries dominated medicine throughout the British Empire.Dr Barrett added: “Dr Livingstone succeeded in exploring the African interior mainly because his medical training enabled him to avoid the infections that killed so many of his predecessors.”A distant relative of Livingstone, Patrick Manson, from Oldmeldrum (near Aberdeen) is known as the father of tropical medicine.”He made innumerable discoveries in this area and inspired ageneration of investigators, many educated at Edinburgh, Glasgow and Aberdeen universities, who discovered the causes of exotic diseases like elephantiasis, bilharzia, African sleeping sickness and leishmaniasis.”Story from BBC NEWS:
Dave,I share the hopes that people have for your healing. I do think there is a lot of wisdom on your site – I have forwarded several of your articles on to friends and family. I really like the principles you list – they have a lot of common sense in them.I have also heard about the Weston Price research among traditional peoples worldwide. You may already be familiar with the book that came out recently based on his research, Nourishing Traditions. It’s a cookbook, but also so much more. A lot of good stuff in the sidebars about processed foods and general nutrition.And I’m currently reading an amazing book called Healing with Whole Foods by Paul Pitchford. This one will take you months to get through but it is so worth it. Some tidbits I’ve gleaned:1) Eat a light supper. Your stomach needs to be empty by 1:00 or 2:00 so that your liver and other organs can go to work doing general detoxification. If they are tied up with food, the toxins stay.2) Eat more variety of whole grains. We all love bread – what’s not to love? But that is the poster child for food that is more processed than necessary, and of which we eat a huge amount of the same item (wheat flour). I’m getting familiar with millet, quinoa, roasted buckwheat, etc. and getting an in depth love affair going with brown rice and oats. All these, by the way, need to be soaked, to remove phytochemicals (? I just made up that word – might be wrong) that inhibit digestion.3) Eat in season and according to the needs of your particular health challenges. (More about this in Healing with Whole Foods.) This speaks to your “one size doesn’t fit all” principle.The two books I’ve mentioned here sometimes contradict one another (most specifically, on the issue of animal foods), but I find that they share a basic view of whole foods and diversity of diet as the basis of good health, in a way that is an extraordinary step forward from basic mainstream processed foods.All the best,Shannon F.
Dave,I like your idea of self-experimentation. It is very much like what I used on my candidiasis. All symptoms are gone and I no longer take any medications, and only one supplement. The only things is, I remain overweight. One thing I found on this journey was that it can take a long time for the body to heal when so much of it diseased/injured. How did I start? I started with a list of symptoms — it was a long list — and then I picked one and researched it. From there I made hypotheses and attempts to eliminate the symptom. What I found was that I had to be very determined because when I relieved one symptom, multiple others would take its place. However, I could check off that one symptom on my list and start another. I added the new sympotoms to the bottom of the list, and just kept going focusing only on one at a time. Sometimes, I’d try something and it would eliminate a symptom I wasn’t looking at, but I’d document the relief, cross it off the list, and continue to work on one I started with. The hardest thing of course is to remain determined while as you solve one symptom, and several more pop-up; often times these symptoms are more aggrevating, too. Why did I continue? Becasue I could see from my list the method was working. And, over time what I came to see was that the downward health spiral was reversed and as I got better the downward spiral reversed itself and I suffered symptoms I hadn’t suffered in years. It would seem to me that the symptoms were there years ago to let me know I was on a downward spiral, but were simply ignored though I visited a physician regularly. Anyway, mid-reasearch I stopped to document cronologically as many symptoms as I could recall over the years. I was working on the end of the symptom list to try to get rid of two of the most persistent symptoms, one having to do with the gut and the other was the asthma. Asthma was the most persistent of all the symptoms. As I worked to heal my gut, my asthma lessened — there wassome kind of connection. I rarely have digestive problems and no longer require asthma meds (down from Advair 500/50 just 3 years ago). I can jog a mile and a quarter, too. That’s not too bad at almost 50 years old.
Perhaps reconsider the attitude toward saturated fats because they are as important to body tissue structure as the other types of fats, obviously in moderation. Trans fats are obviously ones to avoid, though.Also investigate the stability of vegetable oils under heat. Most vegetable oils are not very heat-stable. When not heat-stable, toxic chemicals can form when you heat them, particularly with repeated heating and cooling (such as in re-use for deep frying). Olive oil, being mostly unsaturated, and coconut oil, being mostly saturated, are two heat-stable vegetable oils. Canola oil also looks good on paper, but the source of the oil has a strange history. Oils that are mostly polyunsaturated (sunflower, corn, etc.) are perhaps the worst for frying.
Hi Dave,I discovered your site a few weeks ago and LOVE what you are trying to do. I relate to your journey of discovery with your body. Self-experimentation is important with many chronic disorders that Western medicine has little treatment for. I discovered this for myself about 13 years ago when I was diagnosed with fibromyalgia, an autoimmune disorder with symptoms that include aches and pains in the connective tissue of the body. At that time [early 1990s], Western Medicine had little treatment and no cure, so I began a search for treatment and hopefully, a cure. I began with a review of medical literature [fortunately a friend at Harvard University’s medical library did a Medline search for me]. Then I tried the treatments that empirical evidence had indicated showing some promise. I had limited success. Nothing made a significant shift until I tried acupuncture. Gradually, over a 2 year period, my symptoms dissapeared, never to return. A valuable resource for Western and alternative medicine [Chinese, Aruvedic, herbs, meditation, body therapies, homeopathy, etc.] is Dr. Andrew Weil. Here’s an article on Crohn’s disease from his website. http://www.drweil.com/u/Article/A92/ . So, Chinese Medicine is one option I’d recommend. I also came to understand that the body-mind-heart-spirit are one, and so physical symptoms are how the body is attempting to surface to the dominant “ego,” or conscious, waking, part of us, what the Ego/Self may not want to hear or is resisting. In my case, fibromyalgia was my body’s way of telling me that my life as I was living at that time was “hurting” me. [I was writing my dissertation at Harvard, married, and the mother of a toddler, and took no time to take care of myself.] My body kept creating pain until I HAD to pay attention and respond by making changes in my life. In addition to Chinese medical frameworks for understanding the body’s energy system, another useful framework chakra system. Chakras [from Sanskrit “wheel”] are energy centers in the body; the major ones correspond to the Western endrocine and immune system. Your digestive system symptoms are associated with the First, or Root, Chakra, which is the energy center of Safety and Survival. OK–you not only left your former occupation, but a whole system of how you earned a living, which very understandably may have led to some level of fear/anxiety [“How am I going to survive and find meaning?”] which, if not adequately faced and responded to could eventually manifest into physical symptoms. This is not in any way to say that we are responsible for our symptoms, but to affirm the dynamic relationship between our bodies and our emotional-spiritual-cognitive selves. Treatments that honor this relationship include Guided Self-Healing, Reiki, Homeopathy, Emotional Freedom Technique [a method of tapping on acupressure points and shifting energy], Flower Essences, Plant Spirit Medicine, and Shamanic Healing. One way you might begin to explore what your body is trying to tell you that Dr. Andrew Weil recommends is going into a quiet meditative state and simply asking your body, “What does this pain mean? What are you trying to tell me?” and see what comes up. Don’t give up after only one try; keep at it. Also try asking for a dream to come to you to tell you before you go to sleep. Know that you are on a journey that is as much about your spirit as it is about your physical symptoms. Blessings, Clarissa
Thank you all for your kind words, encouragement, ideas and links. I’m up to 120 e-mails with suggestions for my self-experimentation program. Anyone interested in the subject, and in more specifics on my program and the methods I’m using, can find them (and some interesting advice on self-experimentation in general) on Seth Roberts’ self-experimentation forum here.
Great post! Good luck with the experiment. I will be checking back to see how it is going.
I would be interested to hear how things are going. My son was diagnosed a year ago and we are still struggling to get things under control-we are in another flare. He is on a similar program as you described except he has not been on Infliximab.Please let me know how it is going and what you have adjusted.Regards,Sally