One Thing...

In the Classic Billy Crystal Comedy, City Slickers, Billy Crystal asks Jack Palance, who plays Curly, the crusty cowboy, what his secret to a good life is. Curly answers, "The secret to a good life is one thing" and holds up an index finger...and then he dies. We never know the answer.

Similarly, in getting to better health in this country, I've been trying to figure out what the "one thing" is that this country should be doing. Figuring out this one thing is important, because we have information overload. There's too much detail, too many problems with complex inter-relations, and therefore no one can act. A 1000 page national health bill was passed, and no one but a few paid experts actually knows whats in it--though the general agreement is that it about providing more access to doctors through changing eligibility and payments; not about a healthier America.

I think I have my answer, and the one thing we should do something about is food. It keeps us alive, it gives us great comfort and enjoyment, creates common ground and cultural history, but can also make us obese, trigger all kinds of disease because of chemicals and nutritional imbalance. And obesity is the number one public health crises in America.

But back to one thing. Food is an extremely complex subject, as I learned when I was ill and actually had to research what made a truly healthy long term diet. I guarantee you the answer is neither simple, nor is what most of us do every day.

In school lunch programs, which could be a major tool in combatting obesity; there are many studies about what is wrong and how to change. But theSchool Nutrition Association, a 55,000 person professional organization whose mission is to advance good nutrition for all children, Tom Baranowski, Professor of Pediatrics Baylor College, gave the following report cards to the efforts across the nation to promote positive change.

Report Card For School Health Behavior Promotors -

IOM Committee on School Nutrition

January 28 2009

Why? Why do all the well intended, well research change efforts fail so miserably? The best answer I can come up with was provided to me in an excellent book called "Switch - How to Change When Change is Hard", by Chip and Dan Heath. Their point is that you need one thing, that motivates both your brain and your heart--and it must be simple. They cite a public health experiment in West Virginia, in one of the most obese towns in the country, to improve diet and nutrition. For years, the town has been told how to eat right, given access to community health professionals, and nothing happened. But then, two researchers found that if you wanted to cut out half the saturated fat in our country's diet, you would cut out whole milk. That's right. I suspect most of my blog readers don't drink whole milk, but most of the country does. In fact, they think its downright healthy.

So they tried an experiment in this town. They showed pictures at all the grocery stores of one glass of whole milk on the left, an equals sign, and five slices of bacon on the right. This was followed by the instructions to buy 1% or fat free milk. Guess what happened? There was a 37% increase in the purchase of lowfat/nonfat milk, that lasted beyond the experiment date. This is a huge needle move for any public policy experiment. What does this prove? According to the Heath brothers, it shows an important truth. Its not that people don't want to change, its that they don't know how; there are too many options.

So for our country, I believe the one thing is food. But we need to find our individual "one thing" that we can do for ourselves and our kids. It has to be simple and irrevocable. For me, its no processed sugar (sugar feeds my chronic fungal infection and sets off my fibromyalgia attacks). That's kind of a big one, so for your family it might be no bleached flour, or no refined oils. Eating less sugar is not a valid option--because it gives you too much wiggle room. Your one thing must be binary. I think you'll find this "one thing" goal setting does lead to change, and then you can find your next "one thing". Diets don't work because there are too many options--too much too choose, too much behavior to modify.

I would be happy if the country replicated West Virginia's experiment. Its a place to start. Curly was a very wise man....

My Healthcare Obsession (Part 3)

It turns out that this blog has helped quite a few people find their way to the right doctor. Dozens of people have contacted me offline to tell me about their crippling struggles and lack of diagnoses. It definitely reminds me why I started Axial Exchange in the first place. So I will finish with my promise to tell you how I crawled back to health. I don't know why I put this off for so long, probably just because it makes me tired to think of everything I had to do (and still do), and because some of it sounds awful and scary. But I hope I can continue to help people who are going through some of the things I went through.

After my complete diagnoses, I started a regimen of anti-bacterials, anti-fungals, and numerous other pills. The first goal was to kill, or at least beat back the latent infections. I was told that I might experience the yeast die-off effect, which is your body's reaction as the anti-fungals begin to attack the yeast. If they were working, I would probably start to feel worse. Boy, did I! within four days, I was sick as a dog--room spinning toilet clutching nausea. This went on for about a month.

After the first two weeks, I started my intravenous vitamin supplements-three hours a day, twice a week, sitting with other patients in a room full of lazy-boy recliners, all of us hooked up to IVs, all looking pretty weak and sick. You signed an agreement saying you wouldn't ask anyone what was wrong with them, but week after week sitting with many of the same people, we started to talk. The diagnoses were all over the place. There were quite a few cancer patients that were seeking out ways to help their immune system through the debilitating phases of chemotherapy and radiation. There were people with all kinds of auto-immune issues, multiple sclerosis, Guillain-Barre, Chron's, lupus, rheumatoid arthritis. There were people with Lyme disease. We all had two things in common, we were quite ill, and the conventional medical system had failed us. Occasionally someone who was further along in the healing process would be there, and offer us all encouragement. I try and do that now when I go back for periodic IVs, as I had to do this year when I had my first major relapse since getting well.

Between the anti-fungals and the IVs, I was totally wiped out. Add to that continued physical therapy for short term pain management, and getting well was a full time job--and an expensive one at that. Other than the pharmaceuticals, nothing was covered by insurance. I was beyond my employer-capped physical therapy treatments. The IVs weren't covered. But at least I felt like I was doing something logical to attack a specific set of issues.

I'm not sure I can pinpoint exactly when this happened, but I'd say between six weeks and two months of these two therapies, I started to feel better. The first thing I noticed was that my mind was a bit clearer. I could actually string a sentence together. Then I noticed that my afternoon exhaustion "naps" were a bit shorter.

In addition, I was on a wide variety of medications, some prescription, some homeopathic, many of which I still take today. They include pills to manage the pain and the over-reactive nervous system, supplements to help rebuild my immune system, and extra vitamins and minerals because I will probably never absorb as many as I should through food due to the multiple years of strain on my digestive system. I had daily what I call my "Heath Ledger cocktail", which included a six or seven prescription medications. Anyone checking the literature would never mix these prescriptions together, and the automatic warning labels at the pharmacy kept getting longer, but they were the right mixture for me. (I later learned that the average number of prescriptions Fibro patients that have found relief take is seven.) I also take many supplements, including Vitamins B, D, magnesium, probiotics, and others I'm sure I'm forgetting. My only issue with suppplements is that you need to take so many, and the pills are usually large. At my peak, I was taking 25 pills/tablets, twice a day. I still take around 15 pills/tablets twice a day, and probably always will, though I try and getting off the prescription medications periodically. If I start feeling worse, I add them back.

Ah Sleep! Something that alluded me for four years. If anyone has ever dealt with chronic insomnia, I feel for you. To this day, what I cherish the most is a good night's sleep, which is still hard. The reason; in Fibromyalgia patients the sympathetic nervous system always is engaged, and you never enter REM sleep, thus sleep is light, you are easily wakened, and you wake up feeling exhausted. But guess what! Our moms were right! You need a good night sleep to get better. Once I gave in to my aversion of trying sleeping pills and started taking a time release formula that helped me stop waking every 90 minutes, I started to sleep, and the healing came faster.

The next phase was diet overhaul. Now let me begin by saying most people would have categorized me as a healthy eater before. No junk foods, lots of vegetables, generally good moderation. But the anti-fungal diet was in a class by itself. No sugar (not even fruit sugars), no gluten or any starch except quinoa, amaranth and buckwheat, and no dairy. What did I eat, you might ask. Not much. I lost a lot of weight, fast. That extra 25 pounds came off in a month, the same way I put it on. But the main reason for the diet had nothing to do with weight; it was to kill the yeast. Basically, the antifungal medications can knock the yeast back, but the slightest bit of fertilizer (ie anything that converts to sugar) will start the yeast regrowth. Trying to get rid of candida is kind of like killing weeds. You yank them out and they grow right back. But, ultimately, if you deprive them of sun and water for long enough, they will die.

This particular diet is called the Body Ecology Diet(http://www.bodyecology.com/), and though its difficult to sustain for most normal people, I highly advise it if you have been suffering from chronic disease for a period of time. It starves the bad stuff while encouraging your immune system to repair with lots of foods that provide immune system support. I was able to stick with it for about four months. Five days after starting this regimen, I experienced another really big level of improvement. Never before did I really understand the link between food and disease (a topic for a later column) until I saw how my health improved staying strictly on this diet. This blog is already too long to tell you the potions I made, my exercise regimens, my nutritional daily supplements, and the amazing machine that helps titrate my medicines, but I followed the instructions rigorously, and I continued to improve. I had to get over my aversions to taking any medications, and I had to relearn everything I had been taught about food and diet. It took me about 9 months to get about 50% well. It took me another six months to get to 90% well, where I remain today.

If anyone is still with me, my point in telling you all of this is that getting well is a process and a total commitment. You need to find the right caregiver, and realize that chronic illness doesn't happen in a month, and you won't get well in a month. But you can get better! I will always have Fibromyalgia and probably candida as well, but I can manage it. Its two years and three months since I started my get well routine, and I am running this company, I am a busy mother of two children, and I have energy again. I know what to do when I have flare-ups, as they're called, and how to recognize when I'm overdoing things. I have a healthier diet and exercise regimen than I ever had before I got sick, and that has to be good for the long run.

My Health Care Obsession (Part 2)

I'd like to dedicate this blog to Brant Walton, an exceptionally talented 34 year old Anethesiologist at Stanford who died way before his time, on December 31st of colon cancer. I only got to know Brant briefly, after he was diagnosed with Stage 4 cancer. A mutual acquaintance put us in touch; and even in his illness, Brant was a fighter. The cause of getting medical information together became hugely important to him. He couldn't believe, even as a doctor at Stanford, with insider knowledge and permissions, how long it took to get his information. In my sadness, I have found a renewed commitment to continue to work towards accessible health information for all.

http://med.stanford.edu/ism/2009/december/obit-walton.html

Since I wrote Part One of this blog, many people have been asking me what my health problem was and how I treated it. To pick up where I left off, I had been diagnosed with both a cervical herniated disc and Fibromyalgia, and packed off with pain pills and a self-help pamphlet. By October of that year, I decided I had to quit my job and focus full-time on getting well. I was dopey and still in pain, and my health continued to decline. Despite all I read about Fibromyalgia, that it wasn't a deteriorating illness, I was deteriorating. I couldn't walk up a flight of steps, carry a bag of groceries, or sleep. I was taking Lyrica, the newest "miracle drug" for Fibro. After six weeks, I had gained 25 pounds. Lyrica did help with some of the pain, but with no weight plateau in sight, my doctor took me off it. The next week was like heroin withdrawal, or what I imagine that would be like. Shaking, sweating, nausea, fevers/chills. Fatigue, no appetite and weight gain.

I was at my most depressed. Something else had to be wrong with me, but the doctors told me I had my diagnosis and I should make the best of it. I learned that 70% of Fibromyalgia patients cannot carry on full-time employment. was spending three mornings a week in physical therapy with muscle manipulation, heat, and electro-stimulation therapy, and that helped level off the pain, but I wasn't getting better. As a last resort, I set up an appointment with Doctor #10, John Pittman of the NC Center for Integrated Medicine. Having grown up around so many major medical systems, I was skeptical about "Alternative Medicine", but after trying so many doctors with no results, I felt I had nothing to lose. Dr. Pittman is an MD that uses both conventional presecription medications and homeopathic medications, and lots of tests. His results are based on scientific evidence.

Dr. Pittman was different from the outset. I wrote a complete medical history, and my initial visit was 3 hours. They asked me my health history going back to my childhood. The application asked my goal.. "To get my life back", I answered. At the end of the interview, Dr. Pittman said he was pretty sure he knew what was wrong with me(!!), but of course wanted the tests back for confirmation; that my pattern was quite familiar to what he'd seen in many other patients. The tests performed were basic blood and urine tests, but he asked for more detail than previous doctors had asked for.

Two weeks later, after two years of misery, I had my answer. I had a chronic fungal infection, generally known as Candida. If you think about your middle school chemistry, disease is either bacterial, viral, fungal, or parasitic. No doctor had tested me for the last two. My fungal level was "off the charts" literally, beyond the 99th percentile. What that meant was that for years, the fungus had been growing inside my intestinal tracts so that it covered it like kudzu. Over time, nothing could get in, or get out. As a result, by the time I was diagnosed, I measured in the bottom quartile of white blood count, red blood count, and all major vitamins and minerals, and in the bottom 5% of my B vitamins and D vitamins. With a chronic fungal infection, over time in order to function, your gut gets little holes in it where the food passes through, unfiltered. This lets in many bad things, including many toxins,. So not only were my essential vitamins and minerals and blood cells depleted, I had heavy degrees of toxic metals, especially mercury. In all, 10 of the 11 toxic metals I was tested for were evident in my blood system.

In addition, I had hypothyroidism (low thyroid) and abnormally low hormonal levels. As Dr. Pittman put it, my battery had "run down". Since my diagnosis I have learned that there is a 70% co-incidence with Irritable Bowel Symptom, Candida, and Fibromyalgia. Increasingly, doctors wonder if there is a chicken/egg syndrome. Does the fungal infection at some point trigger the auto-immune disease?

Dr Pittman told me that the treatment he recommended would take about a year. Based on his other patients, he felt there was a 75% chance I would feel substantively better, and that I would learn how to avoid major setbacks. He also warned me that most of the treatments he recommended were not covered by insurance. There were very few protocols approved for either Fibromyalgia or Candida other than pain pills and anti-fungals; neither if which he believed got to the root cause of the problem. He outlined a four step plan. 1) Aggressively fight the infection; 2) Immediately address the fatigue through intravenous supplements, since I wasn't absorbing what I needed through my digestive track, 3) Rebuild my immune system and digestive track so my body could filter and absorb normally and 4) have chelation therapy to remove the toxic metals.

I was so thrilled to have an answer and a plan. I wasn't going crazy; I was just very sick! But why had it taken so long to get a diagnosis? What was wrong with the conventional medical system? I took my test results back to my internist and other conventional doctors I had seen along the way, and they validated his diagnoses, though no one could explain why they hadn't found the issues or ordered the test. The problem in my opinion, is two fold. No regular doctor can spend enough time with you to figure out what is wrong if it is not glaringly obvious and the illness is systemic. Secondly, health information was not captured and stored for all the other doctors (or me) to evaluate.

In the next blog, I will tell you how I crawled back to health.