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Mitochondria, Electricity and My Recovery From Secondary Progressive MS
I have a shocking morning ritual. It is a painful process. First, I wrap elastic straps around my legs, chest and waist. Next, I moisten the electrodes. Then one by one, I put them over my muscles. When all sixteen electrodes are in place, I turn the dials and electricity flows into my body, ten seconds on, ten seconds off. At first it feels like bugs racing across my skin. I continue dialing up the electricity. The contractions start. I squeeze every muscle in my body as I zap myself. It hurts less that way. I turn it up as high as I can stand. Then for the next thirty minutes I zap. After zapping I take my morning medicines, most of which are herbal medicines, and nutritional supplements.
Ten years ago I would have labeled what I am doing as fringe, unproven, a waste of money and time. I never understood why patients spent nearly as much on alternative therapies as what they spent seeing us physicians. That was before I had an illness that the best evidence-based medicine could not stop.
In college I loved doing Tae Kwon Do. I even won a bronze medal at the Pan American Trials in free sparring. A lot has changed since then.
I went to medical school, did an internal medicine residency. I had a joint appointment with the VA and the university and ran a small department. I had a family, and two kids. I was finishing my MBA. Everything was going great. That is when it happened.
My partner and I had noticed that the footfall between my left and right feet became different the farther I walked. She wanted me to see someone. I preferred denial and put it off. However, within a few months I could no longer deny something was wrong. I called a friend in rheumatology. She saw me the next morning.
They gave me test after test. I experienced what my patients often did-diagnostic uncertainty and the specter of terrible possibilities. Eventually it came to a spinal tap. I had multiple sclerosis (MS). I asked about my long-term prognosis. My doctor said I had favorable signs, but MS was an unpredictable disease.
I used PubMed to search the medical literature myself. It was ugly. Within ten years of diagnosis, half cannot work. A third needed mobility assistance. Nearly everyone with MS moves from relapsing-remitting to secondary progressive MS. Treatments reduced the frequency of relapses. It was not clear if anything stopped the progressive loss of function over time, however. I quit reading the literature. It was too depressing.
Instead, I sought out the best people at the best places, and received the best evidence-based medicine available. With treatment I had no relapses, no acute episodes of weakness. But things slowly, steadily got worse. I had secondary progressive MS.
They tried chemotherapy, but it did not do much. My doctor had me get a scooter. Then my back became too weak to hold me up. We got zero gravity chairs for my office and for home. Reclining instead of sitting was less tiring.
I asked, “Why in the absence of relapses was I steadily more disabled?” My neurologist said, “We see this.” He told me over time the brain and spinal cord atrophy. I knew that atrophy was a polite, medical way of saying that brain cells die.
If things continued as they were, eventually I would be unable to walk, or even sit up.
The best evidence-based medicine was not good enough. I went back to reading the literature. At first it was mostly over my head. With time I understood more of the words and then more of the concepts. I read more basic science articles. I could not find anything that explained what caused progressive MS.
I knew brain atrophy occurred in Parkinson’s, Huntington’s, and Alzheimer’s. I looked for articles explaining what caused brain cells to die in those diseases. There were common threads-excito-toxicity and mitochondrial failure. Was that the final common pathway for all neuro-degenerative disorders? Could that be what occurs in progressive MS?
I focused on excito-toxicity and mitochondrial function. Most studies were in animal models, using experimental agents, things not yet approved by the FDA. A handful of articles talked about mitochondrial performance and food supplements: Creatine, Carnitine, Lipoic Acid, Co-enzyme Q and B complex vitamins. I started taking them.
A few weeks later my energy seemed somewhat better. I wondered if my improvement was real, so I stopped the supplements. After three days, my afternoon fatigue was worse. When I resumed them, I felt better. A month later, I tried it again, with the same result. I was convinced.
My rate of decline slowed. Work was tiring. I did less direct patient care. Instead I became part of the IRB, the institutional review board. Every week the IRB met, reviewing research protocols to ensure human subjects were protected from harm. I quit traveling, did clinical research.
Over the next three years I became weaker, albeit more slowly. I quit singing. I walked less. I reclined further back to work and to eat. By five, when I got home I could not stand up the few seconds it took to sort through the mail. Most nights I needed two canes to walk. If I raised my hands over my head, I had intense pain in my back. It seemed that walking, at least in the evening, would soon be more than I could do.
That was when it happened. I was assigned three studies to review for the upcoming IRB meeting. One of them was studying the use of neuromuscular electrical stimulation. The study question was how it affected future risk of broken bones and quality of life of paralyzed individuals. That study stayed on my mind.
Two weeks later I was at physical therapy. I asked my therapist, Dave, if he was familiar with electrical stimulation of muscles. He was quite familiar it. “Neuromuscular stim,” as he called it, was used first by the Russians to increase muscle mass in their Olympic athletes. Here in the US it was used by athletes primarily to speed recovery from injuries.
But he was not sure it would help me. First, most athletes found it exhausting. Second, it was painful; and third, it was not approved for MS. To me, what was there to lose? I wanted to try it. I did not care if I had to pay for it myself.
We tried it the following week. Dave told me I needed to contract the muscle forcefully on top of the contraction induced by electricity. He put the electrodes on my back and had me lift my leg off the table. Dave dialed up the electricity and bugs raced across my skin. It became electrical and then painful. Then it stopped. Ten seconds of electricity were followed by ten seconds of resting. Ten minutes later it was over. I sat up. I was not tired, not in the least. I felt great. Dave said endorphins were released by the neuromuscular stim.
It took a couple of weeks for Dave to find a portable device that could deliver neuromuscular stim. The Empi300® had two channels. I could do two muscle groups at once. Dave told me it would take 45 minutes of electrical time each day to strengthen, and 15 minutes to maintain, muscles. I could stimulate as many muscle groups as I had time to zap.
I should use the stimulator on my belly and back muscles as I did my physical therapy routine. I started that night. I attached the electrodes, dialed up the energy. All I could do was suck in my gut as I zapped my muscles. It took two weeks before I could zap and actually exercise. I got so I could zap and do isometric muscle contractions during the day. After a couple of weeks my back pain was mostly gone. Sitting became less tiring. At the end of the month I could stand in the kitchen a few minutes, while working on supper.
At the same time that I started zapping, I had obtained a continuing medical education course on neuroprotection. It was a text and twenty hours of lecture. I studied each night. They covered neurotransmitters, inflammation molecules, mitochondria, oxidative stress, and free radicals. I started with mitochondria and the generation of ATP, the energy molecule. I drew out the reactions, co-factors and bi-products. If there were not enough of the co-factors or anti-oxidants in the cell, a lot of free radicals were generated. That was a called oxidative stress. The free radicals, if not quickly neutralized, could harm the mitochondria or the cellular DNA. Too much damage and the cell made the wrong things or died.
Next, the course covered excito-toxicity and neurotransmitters. Again, I drew out more equations. The key point was that excito-toxicity was associated with excessive glutamate. On the other hand, gamma amino butyric acid, GABA, lowered glutamate levels and protected against excito-toxicity. Even better, the amino acids N acetyl cysteine, glutathione and taurine could increase GABA levels in the brain.
None of this was standard of care for academic neurology, at least not that I was aware. Was it fringe medicine, or was it on the leading edge of basic science, years ahead of clinical practice? I had known free radicals were involved in the progression of chronic diseases like diabetes and heart disease. It made sense that free radicals were involved in the brain too.
I created a list of specific micronutrients I needed to add to my diet. Then I had to find a reference to identify food sources. The World’s Healthiest Foods, with its nutritional information and recipes, was perfect. Good sources for the nutrients I wanted included garlic, onion, leeks, kale, collards, cabbage, broccoli, and cauliflower, and seafood. I started taking amino acid supplements. Each meal I had huge plate of kale or collards.
Four days later in church I sang for the first time in six months. In fact, I made it through all four verses of all three songs. My strength and stamina improved day by day. At physical therapy, as I went through the circuit of weight training, Dave increased both the weight and the number of repetitions. I was remarkably stronger than the week before.
At work I walked to the bathroom rather than use the scooter. In clinic I walked between the resident staffing room and the exam rooms. When I spoke to people on the phone, they often said how much stronger my voice sounded. Evenings, if I got home first, I started supper. I could even reach overhead without pain to take spices down from the shelf.
Exhaustion was no longer pulling me down. I cleaned my office and my bedroom, going through stacks of papers that should have been tossed years earlier. Secondary progressive MS only went one direction-downhill. Yet there I was, getting stronger.
As I walked through out the hospital, over and over, I heard, “Dr. Wahls, what happened to you? You are walking!” People often also added, “Don’t take this wrong, but you look great; last fall you did not look good at all.”
There were only two channels on my Empi300®, but my whole left side was weak. I wished I could zap more of my muscles. There was, however, only so much time in a day. I looked for a device that had more channels and could deliver electricity. I found one on the internet. The TDR68® had eight channels. It could deliver neuromuscular stim and the Russian protocol, delivering the electricity deeper into the muscles. I ordered it.
Doing all eight channels all at once, with a total body isometric squeeze, was quite intense. I was tired. I felt like I had done a huge workout, like I had taken a long run. I was exhilarated. I did the Russian protocol for my morning routine and continued doing the daytime zaps with my Empi 300®. As my strength improved, the world changed before me.
I was like Paul on the way to Damascus. I had been struck down, replaced by someone who sees the power of food, nutrition, and electricity. I saw disease and health quite differently. I knew that food, filled with micronutrients, was likely far more effective than anything else at restoring health long-term. Yet physicians never talked much about food.
I started asking my patients how many vegetables they ate in a typical day. Zero was the most common answer. It was the same for fruit. I asked about fish, shellfish, liver and organ meats. Then in a very basic way, I reviewed how mitochondria made ATP. I explained where the micronutrients B vitamins, co-enzyme Q and anti-oxidants fit in the generation of ATP. Then I told them their bodies needed B vitamins, coenzyme Q and 5, preferably 9 fruits and vegetables a day. To a person my patients got it. To a person they committed to increasing their vegetables and fruits. To a person, at the follow-up clinic appointment they reporting eating more vegetables and fruit and feeling better.
Seven months ago, I needed a scooter, and two canes. Now I walk throughout the hospital, and continue to get stronger. This remarkable recovery of function was not dependent on one of the designer MS drugs, costing thousands of dollars each month. Instead, it was non- approved device, costing less than a thousand dollars, and a diet, rich with micronutrients.
No IRB would have approved an experiment doing all the interventions I had done on myself. Sometimes testing a theory on one’s self, as I did, is the only way to find out. Unfortunately, I could not find anyone to study the biology of the changes that happened, and which are still happening, to me. This needs replication in others, but my experience has profound implications. It may be possible to treat MS more effectively with far less cost and risk than what is used now or in the immediate pipeline. Mitochondria failure may be what drives MS more than inflammation.
The nutritional impact of my observations is even more profound. First, patients can be taught about mitochondria and micronutrients within a few minutes. They are quite capable of changing their diets when it makes sense to do so. Health is related to the micronutrients we eat or fail to eat. Suppose the government revised the food pyramid to ensure micronutrients for optimal mitochondrial health were consumed. If we taught our physicians, our nurses, our coaches, our children and ourselves the importance of micronutrients, vegetables and fruit, how much health and how much less chronic disease would we have?
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#Mitochondria #Electricity #Recovery #Secondary #Progressive