Liz: Hello Japhet. Can you tell our audience about yourself and describe where you were before you recovered?
Japhet: Hello everyone. I’m Japhet (rhymes with ‘jacket’). I’m 39 and live in New Hampshire where I work from home and hang out at the local board game cafe.
My journey began in 2009 during a period of stress after moving to a new country with dreams to be a digital nomad. The pressure accumulated as I started to run out of cash, began working harder at my online business, and skipped out on meeting the locals.
I then got a bacterial gut infection in Argentina that destroyed my gut. I was given powerful antibiotics. Within weeks, I developed worsening fatigue, which was accompanied by palpitations, chest pain, anxiety, low blood sugar, and IBS.
I began noticing acute reactions to any sort of negative idea, whether it be a news headline, a video about illness, financial worries, or even bad memories. Any form of stress or physical exertion, however minor, would cause my disabling symptoms to significantly rise.
Within 5 months, my bed became my prison and only bathroom breaks were possible.
Without enough energy to even read a book, I would just lay there for hours.
Liz: How was your initial experience getting answers?
Japhet: Initially, my doctor visits came from being rushed to the hospital in the middle of the night with chest pains and shallow breath, barely able to stand. I was put on IV glucose, which somehow helped calm me down. This happened a few more times.
Multiple ER nurses and doctors concluded it was stress. This wasn’t incorrect. Stress had been a factor culminating in my health decline, and I was stressed by what was happening to my body. I wasn’t completely sold by their explanation of “stress” though. It felt like I was dying! I felt there was something seriously biologically wrong driving these alarming responses to stress.
I scheduled several visits with various doctors who referred me to various specialists. I was on a heart monitor, did a colonoscopy for the IBS, ran lots of blood test. And all they could tell me was “your blood tests look fine.”
I nevertheless took the Prozac I was prescribed for 3 months, which helped alleviate my anxiety, but did not help with my severe fatigue, extreme digestion issues, and long list of other symptoms. I noticed it also dulled my spirit, if that makes sense.
Liz: What did you think was causing these symptoms?
Japhet: I suspected it was diet-related, but really wasn’t sure. In the early years, I still fully expected a person in a white coat to figure it out for me. But when they all shrugged their shoulders, I began to suspect that I was the one who would have to fix it.
Liz: Was there a turning point for you?
Japhet: It wasn’t as if I was suddenly struck with the answer.
It was a very gradual shift towards the realization that I was responsible for figuring this out.
And this began a long slow process of trial and error. I had to learn how to live within my energy budget while using the resources I had to gradually improve my lifestyle. There were many times during my journey when I gave up trying to figure it out, which I can’t take back.
Liz: What began your trajectory back to health?
Japhet: What really turned the tide for me was my diet. Because my income had dwindled, I had been eating really cheap foods like rice and beans and bread in the years leading up to my weakest point.
This started improving in 2011 with following a doctor’s wild guess to eliminate gluten. This helped immensely, and I am very thankful for this doctor. I could finally read books, do research on my laptop, even get out of bed at times!
Japhet in 2011
My IBS symptoms also improved to the point where I could actually keep food in my stomach. I finally stopped losing weight. But it wasn’t until I started experimenting with a ketogenic diet that I actually gained the physical strength to leave my house.
Liz: Can you explain more about your diet?
Japhet: It took many years of trial and error. Gluten elimination was a double-success because it not only lowered my inflammation, it also lowered my carbohydrate intake and I began to eat more protein and fat.
My body began to adapt to these more stable sources of energy that did not cause my blood sugar levels to spike and crash.
Six months after going gluten free, I decided to take the plunge into a full keto diet. But I went too fast. My body wasn’t prepared for the sudden drop in carbs. I wasn’t metabolising enough fat at the time, so although my energy was stable, it was very low.
I found that when I added carbs back in, I would get a surge of energy and feel good, but experience exacerbated blood sugar swings. Even complex carbs were too destabilizing. I was going back and forth on carb intake, trying to find a sweet spot, not fully sure if I was on the right approach.
I eventually found my way into a ketogenic diet that seemed to work for me. Meat, cheese, veggies, nuts, seeds, olives, avocado, eggs, and butter. But this wasn’t quite the full answer. It turns out I had more elimination to do before I resolved my IBS and got my energy back.
I started with eliminating dairy. Then nuts and seeds. Then avocado and olives. I was down to meat and vegetables and doing okay.
My full recovery came when I dropped the veggies and went full carnivore.
My IBS symptoms finally were gone. All fatigue was finally gone. My back acne cleared up. My sleep improved. So it turns out, those darn veggies — while nutritious for most people — were causing all kinds of problems for me. I now eat nose-to-tail including organs, and plenty of animal fat, and I’ve never felt better.
Liz: Interesting. While there are many common themes from recovery stories, diet is not one of them. Some eat plant-based, many eat Paleo, some eat a healthier version of the standard diet. I have heard some people who did best going full carnivore. Why do you think your body prefers this diet?
Japhet: We all have different sets of bacteria in our gut to help us digest the wide variety of foods in our diet.
Most people are able to process and eliminate the toxins found in plants. However, I am not most people.
I suspect that when I got a bacterial infection and then nuked my system with antibiotics, that this caused my gut bacterial community to shift. So now the one thing that I digest well is meat and animal fat. While it would be nice to be able to digest a fruit smoothie or have some nachos, I’ve learned that my body does not process those well.
For anyone experiencing extreme IBS after a gut infection, I’d encourage them to ask themselves the question: which plant toxins am I still able to process? Which are causing me harm?
There are two approaches to figuring this out. One is to try eliminating one type of food for a week and see if things improve. Then test another food, and another. And you might suspect it’s dairy for example, so you eliminate that and continue testing other things. But meanwhile you are still eating a wide variety of potentially inflammatory foods, and that creates a background noise that can mess with your current experiment. And sometimes you won’t respond to an elimination for weeks. The half-life of some plant toxins is 21 days. So it’s really hard to get statistically significant data from this approach.
The other approach is to eliminate everything except what you need to survive. It turns out, we can survive indefinitely on meat and animal fat. So eat that for 30 days and *then* add in things week-by-week if you want.
Whichever approach you take, you ultimately have to figure out what works best for you through trial and error.
I learned to forget about what I was supposed to eat and instead just focused on what actually helped by listening to my body.
It was empowering to decide that for myself and see results. It took being bedridden and useless to get to that point, but the self-knowledge I gained is life-long.
Liz: That makes sense. I’m aware of new research (from UCSD, Columbia, and more) that shows most people with ME/CFS have dysfunctional glucose metabolism pathways. Some might say though that your diet is controversial or ‘wrong.’
Japhet: I think there are a lot of things we can all agree on. First off, I believe we all can agree that livestock should be treated humanely. Animals weren’t meant to live in small cages. I source most of my meat from local farms where I can go any time and see the cows enjoying their pasture.
I also believe strongly, and I think we all can agree, that sugar and processed foods do not belong in our diet.
Last, I think more people — vegans, omnivores, and carnivores — are starting to question the grain-heavy standard American diet. We now know the food pyramid was based on special interest lobbying (the sugar, corn and snack-food associations in particular) than it was actual science.
Liz: Aye. You mentioned earlier that reading or watching anything negative or about illness exacerbated your symptoms. How did you navigate this during your journey back to health?
Japhet: I remember subscribing to a prepper channel on YouTube in 2008. Every episode was full of doom and gloom and at one point I realized that it was doing more harm than good for me. So I unsubscribed.
That’s one example but in general, it’s been helpful to take a step back and ask whether consuming the next piece of content will be a net win. And take the same approach to all of life for that matter. Like Kondo says, remove the things that do not bring you joy.
I think of it as guarding the door to my thoughts.
I also have my phone on Do Not Disturb 24/7 and turned off notifications for everything except messaging apps. This way, I get to decide when I’m ready to consume content, rather than others deciding for me.
Liz: I love how you put that. Exercise is difficult for people with ME/CFS, because the body fails to properly recover from exertion. Can you explain your experience with this, and how you are now able to exercise today?
Early on I tried weight-lifting my way out of CFS, thinking I could build my strength that way. Nope. Lifting heavy weights left me exhausted and weaker than when I started.
Around 18 months after switching to low-carb, I had enough of my energy back to start gradually expanding my exercise.
As my capacity expanded mostly due to my new low-carb diet, I was able to go on short walks.
The area I was living in had a small in-town forest, and I was able to walk there and back. I enjoyed the peace of nature on these walks.
An old college friend, who happened to also live in my same little town, posted online that her and her husband were going rock climbing at the local gym. I hadn’t talked to her in years, but reached out asking if I could join. This began my love of rock climbing.
It’s definitely not a sport for someone whose adrenal glands are as compromised as mine previously were. So being able to get that climbing adrenaline going and not wipe out was a huge step.
Climbing is also a great low-impact sport where you can really choose your own difficulty. It’s brief moments of intensity, followed by lots of rest in between climbs.
Liz: Rock climbing sounds like a huge milestone physically. It seems like it was also a personal milestone — you reaching out to a friend after years of isolation because of your job and then your health?
Japhet followed up to this question with a video:
Liz: Many recoverers mention boundaries as something important for their recovery. Does this resonate with you?
Japhet: Yes, it definitely was reflecting back, though it wasn’t something I was fully aware of at the time. During my experience with ME/CFS, I was also in a 7-year relationship where there were literally no boundaries and I suppressed my own needs for the sake of the relationship. When I finally started communicating what I wanted, that ended our relationship. When I was free again, it made me realize how much I had compromised my own needs.
I now have much healthier boundaries with others.
Liz: Has the way you interacted with others changed?
Japhet: Yes. I won’t compromise on food. When I’m out with my friends, I make sure the restaurant we chose has the foods my body does best with.
I also won’t compromise on sleep. You won’t find me staying out late at the club.
Liz: Can you tell us more about what you’ve found helpful for getting a good night’s sleep?
Japhet: Sleep was a major challenge throughout my journey with ME/CFS.
Getting it right was an important part of my recovery. Meditating during the day has helped my body stay calm at night. I’ve found that shutting down everything before 10 pm, turning the heat down 5 degrees, and turning on the white noise machine has been very helpful. My room is pitch black at night, and I keep my phone out of reach on airplane mode.
When my mind is preoccupied, I find writing things down on paper in my journal before bed helps offload my worries. I’ll also make a to-do list for tomorrow. Meditating daily helps with this as well.
These days I’m also on an earlier schedule, and I try to get sunlight first thing in the morning, which is helpful for our circadian rhythm.
I supplement with magnesium and also keep a bottle of melatonin by my bed for the occasional restless night.
Liz: Great insights. Can you describe your life now? What are you grateful for?
I have 16 solid hours of unwavering energy every single day. It feels like I’m on an IV or something. Unlimited energy and I’m free to do any activity I want now. I’m spending much of that time either working, with my son, outside, or cooking a delicious steak.
I’m super grateful for that freedom. That I can go out for hikes now. Be in the sun. Walk for miles and not get tired.
It used to be I couldn’t make it around the block. Now I climb mountains.
My favorite hike last summer was a 3-peak ridge trail up Mount Lafayette, Mount Lincoln, and Little Haystack. It was gorgeous up there.
Liz: Would you say you are ‘fully’ recovered?
Yeah, in the sense that my full energy is back and I no longer have PEM (post-exertional malaise), two main symptoms of ME/CFS.
However, I still cannot convert carbohydrates into energy very well. And my system can’t deal with plant toxins as well as most people can, as mentioned earlier. So I do have to be strict with diet but fortunately, I love meat.
I’m also sensitive to sleep deprivation. I find it hard to calm my adrenals at night if I do anything too stimulating after 8pm.
Liz: I’m in the same boat with sleep and a healthy diet that works for me regarding my continued wellbeing.
Japhet: Going to bed earlier isn’t the worst thing ever. It’s nice to enjoy the morning sun.
I realize how fortunate I am to have this second chance at life and this opportunity to share my story.
Liz: Thanks again for sharing. What is the final takeaway you’d like to share with our readers?
Japhet: It took years of struggling, fighting, isolating, hospitals, misdiagnoses, research, diet changes, and trial and error to find my way back to health.
We all have to figure out what’s right for our bodies, but we shouldn’t have to do it alone.
My personal mission is to share everything I’ve learned from my own journey with people struggling with fatigue, including CFS/ME. If this is you, please don’t struggle alone like I did for years. Find a friend who is going through this, or a support group, or a mentor. And feel free to reach out to me personally. I’d love to help!
Japhet is a health coach who helps chronically fatigued professionals restore all-day energy and reconnect with their tribe. He can be found on Instagram at @japhet.stevens. Follow him there for daily tips and inspiration.