(The metabolomic findings in ME/CFS and reports that high carbohydrate foods have a sapping effect suggest that ketogenic diets – which increase fats and proteins and severely limit carbohydrates – may make sense in ME/CFS and fibromyalgia. Thanks for Lori for allowing Health Rising to publish her ketogenic diet success story. Lori is not well yet but she is greatly improved. As with every recovery/recovering ME/CFS/FM story please note that these are heterogeneous disorders and that your results may differ.)
I just could not get on top of my fatigue. When the doctors couldn’t convince me I was just getting older they diagnosed me as depressed. Lori
In April of 1996, in the seventh month of pregnancy, I was put on bed rest for pregnancy-induced hypertension. I was a full-time registered architect, healthy I’d been preparing for pregnancy for a year with a normal level of stress.
The same week – four states away – my mother was diagnosed with cancer.
An only child, father long deceased, the next year and a half ended up being blur of caring for a nursing infant and traveling back and forth for Mom’s surgeries and radiation. In the middle of it, I came down with a virus that hit my infant son as well. I remember him bundled on my chest, sleeping in my childhood bedroom in a recliner since neither of us could breathe lying down.
The virus went, the days of doctors and radiation continued. Remission. Repeat. Eventually my husband and I moved my mother to our town and subsequently to a hospice facility nearby. She died two years to the week from her initial diagnosis. If the immediate stress of a terminally ill parent was over, new responsibilities of cleaning out and selling her home and settling the remainder of her estate took an additional toll.
A day felt like a 20-mile hike with a 50 lb. backpack, with a toddler. On occasions my knees would buckle, unable to keep me upright simply walking across the room. Naps were mandatory, but non- restorative.
The Big Relapse
Three years later, I was beginning to recover. After my son went to preschool, I went home and slept. We were able to manage a short family vacation. Then my son ended up in the hospital with complications from a tonsillectomy. The day we brought him home from the hospital after a week of sleeping (badly) on a window seat next to his bed, I found out I was pregnant.
I cried. I was exhausted and could not imagine getting through another pregnancy safely. As fate would have it, I miscarried several weeks later.
The cycle continued, however, I just could not get on top of my fatigue. When the doctors couldn’t convince me I was just getting older they diagnosed me as depressed. Antidepressant therapy did help, but if it somewhat brightened my mood, it was no help for the fatigue and inertia I was experiencing.
I had not practiced as an architect since my son was born, but I had at least kept up my license and continuing education. Now I was forced to put myself on inactive status because I couldn’t understand the technical information I was required to study.
After a minimal pass at vacuuming and cleaning the bathroom in preparation for a childhood friends visit, I spent the next day in a rocking chair, attempting to will myself to verticality. I began to have flares of pain in my arms and upper chest – so tender that shifting the covers to turn in bed was excruciating.
I am extremely fortunate to have a husband who knew me ‘before’. Although he did not understand what was happening, at least he supported my attempts to find a solution. Even if my cognitive processing had slowed dramatically I was still an information junky at heart. I started digging online and ordering books through the library.
I visited a holistic clinic and met the first health professionals who actually *believed* my issues rather than dismissing them. I learned about adrenals and hormones and supplements and met people who had been living with this so-called ‘chronic fatigue syndrome’ for a dozen or more years. That seemed like eternity.
I committed myself to what I called “1-percent” solutions. If something might help, I’d give it a shot. If I noticed improvement, I kept it going. I participated in a double-blind trial of an anti-viral for fibro. A clinic focused on chronic fatigue and fibromyalgia opened 6 hours away, and I finally had a slew of medical testing that documented a host of potential problems, which were addressed with supplements and medication. I tried Xyrem but eventually stopped.
I settled into an existence that at least did not include any new major setbacks. If I guarded my energy – and I certainly did – I could make it through a well-planned week. Near-daily naps of 3+ hours were critical, as were at least one weekend day in bed. Improvements were slow, but the fog was lifting a bit.
The clinic was sold, and with the new fee structure too steep to continue, I limped along on my own. I switched to a local endocrinologist for thyroid medication. Since he could not understand the rationale for my former treatment protocol, my medication changed. Handing my huge file to a new nurse practitioner, her eyes practically popped out of her head, “I don’t know what to do with this!”, she said. At least she was honest.
At this point it became obvious to me that I was probably never going to improve significantly. I knew I was one of the lucky ones. I was relatively ‘high functioning’: I could manage up to a 20-hour work week, and perhaps minimal house work. But if my schedule changed abruptly, even a single event or change of plans, the stress would wipe me out for several days.
Florida’s heat and humidity were miserable as well. Even mental concentration resulted in perspiration, which resulted in dehydration, which resulted in pain, which resulted my sleeping 20 hours at a time.
Help For Sleep
In October-2015 my husband recommended that I see his pulmonologist to schedule a sleep study. I’d had two sleep studies before (which showed “markedly disturbed sleep”), but this study indicated I had a combination of central and obstructive sleep apnea. At long last, I had an auto-pap, a specialized type of continuous positive air pressure (CPAP) machine that adjusts pressure based on ongoing feedback.
I was no longer waking with my heart pounding and a headache when my brain ‘forgot’ to tell my diaphragm to breathe. The hope that the CPAP treatment would set off a cascade of benefits – better more energy and weight loss didn’t materialize. I settled for better sleep.
In early June-2016 I had the opportunity to start swimming. By swimming, I mean ‘getting in cool water and moving around a little’. It was a huge relief to get a break from the misery of Florida’s summers. I could stop perspiration episodes faster, and so, managed to decrease some pain. Sticking to strokes where my arms were even with or below my heart helped. The crawl was out – I couldn’t catch my breath, even at a snail’s pace. The sidestroke, lazy backstroke and a modified dog paddle were my friends. Floating was heaven. At least I was outside.
Even as swimming provided relief, and with 15 lbs. gone from the gentle exercise, my weight was still up to nearly 245 (I’m 5′-10″), 95 lbs. above my lowest adult weight. I was taking two antidepressants and thyroid medication, and I was still having days when I was in bed more than I was out. If I worked, it was in the afternoon because I couldn’t drag myself out of bed until mid-day. And every morning when I woke, I thought that if I felt like this when I was just over 50, the rest of my life looked pretty bleak.
In September, my husband came home from a check-up with his cardiologist with a mandate – see a nutrition counselor. “She’ll change your life,” his cardiologist said. When my husband came home from his first appointment, I read the material he was given for the ‘low carb, high fat (moderate protein)’ (LCHF) program he was to try. Before this, if anyone would have said I’d ever give up carbs, I’d have laughed in their face. But when I read that LCHF can be beneficial for inflammation I decided I’d keep my husband company in his quest.
We purged the pantry and refrigerator. Our new limit was about 20 total grams of carbohydrates a day. Within a couple of days, the reflux that plagued my nights was gone. Within a few more days, the pain in my arms was reduced by about 90 percent. Brain fog began lifting. My husband and I went on a vacation and stayed true to the plan the entire time and came home having lost weight (!). Not even a couple of off plan items during the holiday season changed my progression to health.
A Ketogenic Lifestyle
A ketogenic diet has not been a 1% solution, but much, much more. I feel like a whole person again. Lori
By this time, I was monitoring morning glucose and using a breath analyzer for signs that I remained in ketosis – when the body has made the switch from using fuel created from carbs to fuel created from fat. Insulin production, without carbs to induce it, dropped. Having gotten past the ‘keto flu’ of adapting to fat burning by paying attention to adequate salt and magnesium intake, I was now (miraculously!) no longer tempted by carbs, or even hungry very often.
I began a mild form of IF (intermittent fasting), meaning that I stopped eating after supper and didn’t have anything except water or broth until about 9 the next morning. It was a natural progression of no longer needing to eat every few hours. If my body was a fuel truck, it was no longer reliant on the ‘carb’ gas tank’ – my body was drawing directly from its main tank of body fat for energy.
I began waking for the day at 7 in the morning after about 8 hours of solid sleep. And I was up for the day. I would do yard work (YARD WORK!) or whatever else that needed doing, then later have a nice cup of coffee with heavy cream. Later I might have an omelet with sausage or bacon. For dinner we might have roasted chicken (with the skin), and a big salad or broccoli with cheese. I’ve even found a low-carb dark chocolate mousse for special occasions.
An “Exceptional Patient”
Last week I saw several doctors for the first time in many months for most of them. My endocrinologist reviewed my weight loss (down 50 lbs. since last year) and told me I’d made his day. My family practitioner was very happy to see my triglycerides at 70 (rather than three times that number) – she has given orders for additional testing to determine cholesterol particle size as some cholesterol has increased.
Although she’d never mentioned it before (when was she going to tell me I was pre-diabetic?), she noted that my previous 118 fasting glucose has been reduced to 83. I no longer have reactive hypoglycemic episodes. My pulmonologist said I was ‘an exceptional patient’. I have dropped (with the doctor’s direction) down to a half dose of one antidepressant, down from full doses of two medications. I felt like they were sticking gold stars on my forehead.
When I read an article on Health Rising, I was far enough along in my LCHF journey to appreciate the idea that for some of us, the processes that allow our bodies to make energy may be broken, and that alternative fuel pathways may allow a work-around for some of us. That seemed to make sense from my recent experience in changing my eating.
In one of the biggest cliches, I haven’t felt this good since my mid-20s. My belts ran out of loops. I’ve had to replace about a quarter of my wardrobe. When I asked my husband to describe the changes he’d seen in me, he said I had not double or triple increases in energy, but ‘exponential’ increases. I’d agree with that.
Since October I’ve done a lot of reading on the science behind the benefits of a LCHF diet. I’ve never been a runner, but during a video describing the differences between athletes on a LCHF regimen vs. those who carb load for a marathon, I learned the word ‘bonking’.
The term is used colloquially both as a noun (“hitting the bonk”) and a verb (“to bonk halfway through the race”). The condition is also known to long-distance (marathon) runners, who usually refer to it as “hitting the wall”. The British may refer to it as “hunger knock,” while “hunger bonk” was used by South African cyclists in the 1960s. It can also be referred to as “blowing up”. Wikipedia
According to Wikipedia, bonking refers to sudden fatigue and loss of energy caused by a depletion of glycogen stores in the liver and muscles. In other words, hitting the wall.
Athletes who are fat fueled don’t ‘bonk’. Since the last two decades for me have been essentially one never-ending bonk, the relief has been incredible. In addition, the presence of ketones in the body has been found to turn off the inflammation response that causes so many problems.
A ketogenic diet has not been a 1% solution, but much, much more. I feel like a whole person again.
May – June 2017 Update
The above was written in February. Since then, I am at a quarter dose of my remaining antidepressant with my doctor’s supervision. I am closing in on 60 lbs. lost and am finally at the 200 lb. threshold.
Inline skates – a reward for crossing the ‘one-der-land’ threshold – stand waiting. I recently returned from a week’s retreat where I had no control over food preparation. Through making good choices only, I was still in ketosis upon arrival home and had dropped an additional pound for a new low. I continue to be pain free.
My ‘energy envelope’ continues to expand, although it is not without limits. Exertion that includes heat/humidity requires several days to recover, although the level of fatigue is greatly reduced. To a stranger, I probably pass for ‘a little tired but normal’. In a completely unexpected turn of events, the ‘chicken skin’ on the back of my arms is completely gone! I track my eating on My Fitness Pal, staying generally within the accepted range for a LCHF way of eating of approximately 20 grams of carbs a day from whole foods. My husband and I together continue to follow a ketogenic way of eating.
In June I started to ramp up my swimming to minimum 5X a week (1000 strokes each) and am working at least half time, with a full summer ahead. (The office building we are in will be made into a bed & breakfast, so we will be moving, with a full slate of projects on the books to keep on top of. I love being back at work with my husband.) In addition, I crossed the ‘onederland’ line, having finally gone below 200 lbs. My in-line skates, which I promised myself as a treat for reaching this, are now MINE!!!
The Free Online Keto Summit Begins on June 15th
The Keto Summit presentations can be viewed free – on the day of the presentation – for all who register. If you’d like to view the presentations at your leisure you can buy the Summit.
Some of the things you will learn include:
- Simple, easy ways to test whether or not your body is burning fat and ketones.
- Things you MUST do properly on a Keto Diet in order to avoid common problems.
- Supplements that can help you get into ketosis (and feel better).
Many Summit presentations are provide practical tips for ketogenic dieters including “Practical Keto”, “How to Interpret Your Blood and Lab Tests”, “Why Water is Critical”, “What to do if Your Keto DIet is Not Working”, “Ketogenic Diet Pitfalls”, “The Myths and Facts of Supplements”, “When to Use or Not Use a Keto Diet.”
- Coming up next – a review of the “Keto-Clarity” book
Suggested Reading – User Friendly:
- Keto Clarity: Your Definitive Guide to the Benefits of a Low-Carb, High-Fat Diet – Eric Westman MD, Jimmy Moore – “This book includes exclusive interviews from twenty of the world’s foremost authorities from various fields bringing their depth of expertise and experience using this nutritional approach. Moore and Westman clearly explain why ketosis is normal, how this nutritional approach is being used therapeutically by many medical professionals, a step-by-step guide to help you produce more ketones and track your progress, real life success stories of people using a ketogenic diet, and more.” – Check out a review here.
- Cholesterol Clarity: What The HDL Is Wrong With My Numbers? Jimmy Moore, Eric C. Westman – “Within the pages of this book you’ll learn invaluable lessons, including: Why your LDL-C and total cholesterol numbers may not be as important in determining your health as your doctor may think. The undeniable negative role chronic inflammation plays in your health”
Suggested Reading – for the Science-Minded (Technical):
- The Art and Science of Low Carbohydrate Living – Jeff S. Volek, PhD, RD and Stephen D. Phinney, MD, PhD – “Carbohydrate restricted diets are commonly practiced but seldom taught. As a result, doctors, dietitians, nutritionists, and nurses may have strong opinions about low carbohydrate dieting, but in many if not most cases, these views are not grounded in science. Doctors Volek and Phinney share over 50 years of clinical experience using low carbohydrate diets, and together they have published more than 200 research papers and chapters on the topic.”
Suggested Watching (the tip of the iceberg):
Low Carb Down Under (channel)
Inflammation and the Low Carb High Fat Diet
Names for further videos (search “keto” plus the following names):
Stephen Phinney, Jeff Volek, Eric Westman, Thomas Seyfried, Gary Fettke, Tim Noakes, Dominic D’Agostino, Sarah Hallbert, Robert Lustig, David Perlmutter
More Ketogenic Diet Resources on Health Rising
- Starter videos For Ketogenic Diet Beginners
- Getting Clear on Ketogenic Diets (for Fibromyalgia and ME/CFS): A Review of “Keto-Clarity: A Definitive Guide”
- How a Ketogenic Diet Boosted Courtney Craig Out of a Relapse
- A Ketogenic Diet Menu
- Ketogenic Diet Resource Page
- Dorothy Walls and Paul Jaminet Talk on Ketogenic Diets
- Using Cronometer to Create A Mitochondrially Supportive Diet
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.