Katie shares practical insights from her CFS recovery journey
Katie from Boston didn’t realize how much of an active life she lived, until it was taken away from her. Today, after a 2-year journey with Chronic Fatigue Syndrome, Katie is back in full health, thriving in her new job, exercising again, and feeling vibrant.
Katie shares her biggest challenges during her CFS journey and the hypothesis she had on what two core things were driving her issues. She also shares which supplements, products, and devices she tried (and what actually helped) and what approach she took to rebalance her fight-or-flight system.
5 key pillars of Katie’s recovery involved:
- Supporting her mitochondria
- Stabilizing her blood sugar
- Creating optimal conditions for sleep
- Reducing environmental stressors
- Healing her autonomic nervous system
I encourage you to dive into the specifics of what worked for Katie (keeping in mind we’re all unique) to inspire you on your journey.
Katie also shares encouraging words at the end of our interview.
Liz: What is your purpose for sharing your recovery story?
I wanted to share my story because it is extremely challenging to find support and therapy from the medical community. There are two prevailing opinions. One camp says “CFS doesn’t exist.” And the other, “CFS exists, but there is no cure.” Neither of these are very helpful.
I think it is important to share stories and resources that healing/recovery is possible.
Going through this chronic illness is terrifying and very complex.
The more people that can spread the word, the more we can help each other.
Even if just one piece of information helps one person, it is worth it.
Liz: What was your life like before CFS/ME?
Prior to CFS, I had an active life, which you don’t fully realize until the “active” part is taken away.
I had achieved high-intensity accomplishments in my life prior, which includes Division I college athletics and a law degree. My career is in finance, which is a high pressure, fast-paced environment.
I took for granted being able to perform at this level, until it was taken away.
To achieve these milestones in my life I needed a fully functioning body. My unwillingness to let go of high performance was a huge motivator in finding a way to recover.
Liz: Can you describe how your journey with CFS/ME began?
My perfect storm really spanned a period of six months. In April 2018, I was driving to help my parents who had a broken water pipe in their house. I was helping them clean up and plan professionally so there wasn’t a mold problem.
While I was driving there, I got in a car accident, but not your typical accident.
A wild turkey hit my car. The car was destroyed.
That Spring, I was having episodes of low blood sugar, and then got a sinus infection that lasted close to 4-6 weeks.
Summer of 2018 however was uneventful. I went to the beach often and was feeling better. In October, I really started feeling unwell. My hypoglycemia was recurring more often.
Normal stressors that didn’t typically hit the radar were starting to feel more and more impactful.
Then in November, I was babysitting my nephew who had a little cold. Nothing out of the ordinary for a two-year-old. He ended up spiking a fever and started seizing. I called the ambulance, and he was rushed to the hospital. In hindsight, it was just a seizure from a virus (which is uncommon, but not rare in children), and he ended up being okay.
But I thought he was dying. When the ambulance arrived, he was blue in my arms.
I have never felt so scared and helpless in my entire life.
With my nephew recovered, I went to work that week. An ambulance drove by with sirens, and all of a sudden, my blood sugar plummeted and I remember thinking… could this be PTSD?
A few days later I was done, completely incapacitated. Couldn’t make it to work. Couldn’t walk, couldn’t do anything.
Liz: What were your functionality levels throughout your journey?
In the beginning, I struggled to walk 200 steps.
Grocery shopping, something I took for granted before, was a big challenge. There were many times I’d be standing in the checkout line sweating on the verge of passing out. I did have better days, too.
For me, recovery was not linear. There were progressions, regressions, and plateaus.
Liz: What were your main health challenges?
My main symptoms were orthostatic intolerance / POTS, blood sugar dysregulation / hypoglycemia, and like I mentioned post-exertional malaise. Brain fog was another one.
Liz: Yet you told me you never stopped working.
I never stopped working. My company was very accommodating, and we had a slow year that year – otherwise this would not have been possible.
There would be days where I’d call out sick intermittently, come in late, and I took extended weekends and things like that. So my schedule was not anywhere near normal, but I didn’t have to go on disability leave. I didn’t let everyone know, but there were a few people that knew.
I was actually never even out longer than three days at a time, because mentally, I was like, “You can’t be sick, they’ll eat you alive.” So I never had to go off leave, but I did get accommodations.
I make it sound easy, but when I got off the train, I’d have to find the escalators because I couldn’t walk up the stairs to get out of the subway. I’d have to calculate whether I could make it into the office.
If I had to go to the bathroom, I’d have to calculate whether I had the steps to make it there and get back without passing out.
So it was pretty awful. I should have taken time off.
I guess that’s a point. People should not push through. Admit your vulnerability and see what happens. Easier said than done though.
Liz: What was your initial experience seeking answers?
Like most people, I went to the doctors and they ran blood tests, but they said, “Everything’s fine. This is fine.”
So you resort to books, articles, and Google.
But you eventually piece everything together and land on Chronic Fatigue Syndrome. Or at least that’s how I got to it about 5 or 6 months in, because my recurring thing was that I couldn’t exercise.
I’d attempt to exercise, and I’d just feel like death. And that was the thing.
I thought this seems to be the indicator, and post-exertional malaise leads you to chronic fatigue syndrome.
But then you get there, and most places say, “You’re stuck with this for life.”
Liz: Did you have any turning points or realizations while searching for answers?
It was probably early 2019 when I was working with the doctors in Boston.
The test came back normal, but I was trying to tell them, “It seems like the energy is just not getting into the cells.”
This is before I even know about mitochondria.
Second, I told them, “There’s something with adrenaline.” If I get worked up, for instance. Or the time I went skiing with my niece, when I was feeling better. But I just died the next day. It wasn’t even physically taxing, but I was going downhill.
I demanded an autonomic test, but they said there was nothing to go on.
This is Boston. This supposedly one of the best medical centers in the country, and they’re coming up short. I knew it wasn’t psychological.
So when all my doctors here failed, I was like, all right, this is up to you.
You’re going to have to figure this out on your own.
Liz: So Katie, how did you deal with this with friends and family and communicating about this?
Well, so I took a very good approach with communicating… by not communicating. That was my strategy.
And I think this goes with like a lot of people. First of all, the type of personality I have, you don’t want to show weakness. So admitting you have a chronic illness, forget it, it off limits. My immediate family members knew, and my one of my sisters who I’m very close with (we live next door) was very involved.
But with everybody else, other family members, friends, I took the approach of, “Okay, maybe tomorrow I’ll be better, or next week I’ll be better.”
And I don’t have to tell anyone. Days rolled into weeks, weeks rolled into months, months rolled in to years.
And it’s not a good strategy because A, people are like, “Well, where’d you go? You fell off the face of the earth. I think you’re kind of just being a jerk.” Or you don’t see someone, and then you tell them like you’ve been on death’s doorstep for a couple of years. And they’re like, “Well, you look fine.”
It’s just a lose, lose situation. And so I didn’t handle it well.
So you take this on yourself, which just makes it that much worse, by shutting people out and not being vulnerable.
Liz: Yeah. Were you able to socialize or was that limited?
It was limited, I was very selective. I’m fairly introverted to begin with. I have a very extroverted job, so I can function in both modes, but I’m content entertaining myself, listening to music, reading a book – totally good like that.
So that wasn’t that big of adjustment, but I was selective. I was able to socialize, but it would be in very small fragments. I wasn’t going on trips with people. It was more like, you’ve got two hours of my time, and I’d let people in a little bit.
At some point, I couldn’t hide it. I’d look terrible.
No color, not being able to stand up. Mentally, just not sharp.
Can’t throw back the wit and the sarcasm and all that – that goes when you’re feeling bad.
It was tough. My fear was that people would start treating me different. I don’t want pity. I didn’t want to be coddled. I didn’t want any of that.
So I was very strategic in my interactions and very limited. And I didn’t do a lot. Which is not a healthy approach.
Liz: Did you make any diet changes during your recovery journey?
In 2014, I actually had a two-week health blip, where I had to take 2 weeks off work. This is when I began to take my health more seriously, though I was mainly just focused on tips and tricks.
One of the resources I found was Terry Wahls who wrote the Wahls Protocol.
It discusses how she recovered from being in a wheelchair with MS to riding a bike and running.
This is where I learned more about the healing power of food.
When I hit rock bottom in 2018, I went back to this book. Later in 2019, I was listenning to Ben Greenfield’s podcast who had Dr. Sarah Myhill on as a guest. This was literally life changing. I felt so seen and validated.
Dr. Myhill has a fantastic book on how to heal from CFS that talks a lot about mitochondria, diet, and supplements. This was great from a variety of standpoints. First, it was someone saying that healing was possible. Second, the book contained a lot of the protocols that I had already had in place, so it was validating that I was on the right track.
I did and Autoimmune Paleo styled diet. I say styled, because I did have exceptions including eating sweet potatoes and other carbs to support my blood sugar levels, especially in the beginning when it was very unstable.
Foods I added:
- Protein (Grass-fed meats, pasture meat, wild caught fish)
- Healthy Fats (Avocado, Olive Oil, Coconut Oil, Butter)
- Resistance Starch & Prebiotics
- Complex Carbohydrates (Quinoa, Soaked Beans, Sweet Potato)
Foods I eliminated:
Liz note: Strating early into my own journey, I removed these same food categories (because of my new strong reactions). I found I did okay with plain organic greek yogurt in the beginning, but later removed it. I had a lot of fears around food, that I would later do work to heal. Hindsight being 20/20, a healthier metaphor for it (instead of “avoiding the bad stuff”) would have been, “taking my body to calmer waters, then strengthening the sails, to sail through the ocean.” That said, I’m not drinking much if any alcohol, and I haven’t gone back to coffee. I’m getting my buzz elsewhere in life.
Liz: So we connected over blood sugar stabilization as both being one part of our recovery.
Yes! We align on so much but what I found most interesting is you emphasized blood sugar as well.
I believe stabilizing your blood sugar is the first thing you want to address.
This is a snippet on how I fixed it over time:
1. I ate something every 2.5-3 hours.
I found in the beginning, it really helped if I ate every 2.5-3 hours. Going longer than this would result in a drop in my blood sugar and would trigger the stress cycle.
Over time, I was able to lengthen the duration of when I needed to eat.
That said, my first goal was to reduce the blood sugar rollercoaster. Here were my eating windows in the beginning:
- Breakfast (within one hour of waking) 6:30-8:00 am
- Snack 10-10:30 am
- Lunch 12:30-1:00 pm
- Snack 3-3:30 pm
- Dinner 5:30-6:00 pm
- Snack 8-8:30 pm
When I felt my blood sugar drop, I found it was best to quickly consume carbs. Over time, I found I could reduce the amount of sugar I needed to get out of crisis mode.
For example, I’d just eat half an apple instead of a whole apple and would see how I felt after a while. Oftentimes, half was all I needed to restore my levels.
2. I added salt and essential amino acids.
When I would have low blood sugar, I would also add salt to eliminate variable of low blood volume vs. low blood sugar.
I also would also add essential amino acids, which help with the neurotransmitters in the brain which could also be contributing to the signal of low blood sugar.
Essential amino acids also support the mitochondria.
3. In the beginning, I avoided going high fat / low carb for my liver.
The liver is a huge regulator of blood sugar, so I found it helpful to remove anything that is an effort for the liver.
A high-fat diet diet is taxing on the liver, so I couldn’t start with this.
My liver needed to be nourished and healed before I was able to go low carb.
Liz: So you said you’re eating low carb now. When and how did you make the transition to lower your carbs?
I could not go low carb until I regained my health, which was in Summer 2020.
To get back to metabolic flexibility requires the brain, adrenals, and liver to be in good shape because to enter a metabolic state where the body utilizes fat for fuel.
There is about a 20 day period where the body is adapting, and it is a stressor on the body.
To recover from CFS, you need to eliminate stressors, but the body needs fatty acids and ketones to function optimally… thus the paradox.
Being able to burn fat for fuel was one of my two main recovery milestones.
The other was being able to exercise again.
I currently go low-carb Sunday evening through Friday afternoon. Then I refeed Friday dinner though Sunday lunch.
Everyone is different so this is not prescriptive. Everyone has to find out what works for them.
I should clarify that I do not go very low carb. For females the hormone profile can make it much harder to go low carb than males. A low carb threshold could be closer to 75 grams. Mine hovers between 50-75 grams. Some days I will go as low as 20 grams, but that is only for a short period of time.
Reminder: Nothing on this website is medical advice nor meant to be prescriptive. We are all different, and we should not be eating off the same food pyramid. Our own needs also can change over time.
By sharing our stories, we hope it encourages you to listen to your own body, and do what’s best for you!
Liz: What supplements did you find were the most helpful during your recovery journey?
Organ pills, PQQ (an antioxidant), CoQ10, Magnesium, Essential Amino Acids, and salt were particularly helpful in recovering from a crash.
I found that the amino acid L-carnitine worked better from a food source. I didn’t notice much from the supplement, but did notice a big improvement from two grass fed ribeye steaks a day at one point (beef contains a lot of L-carnitine).
I tried bile salts and digestive enzymes in the beginning, but they plummeted my blood sugar too much.
Here is Katie’s supplement cabinet (and her red light):
Liz: What supplements are you still currently taking post-recovery?
This is my current supplement and diet routine to maintain optimal health:
- 1-2 Quinton Hypertonic electrolyte vials (purified seawater) in 12 ounces of water with lemon.
- Ancestral Supplements Desiccated Thyroid (2 capsules)
- Red Light Therapy (15 minutes). I currently use Joovv.
I have breakfast about an hour later.
- Two eggs and bacon (I am eating eggs now, and it took me a very long time to get to the point where I didn’t need carbs in the morning.) Prior I would have 1/2 sweet potato or 1/4 of an apple.
- When I eat eggs, I will take bitters which help with bile production. I’m currently using Dr. Shades Bitters no 9 from Quicksilver Scientific.
- Or I’ll have left over dinner from the night before, which usually consists on a one pot dish of meat, variety of vegetables, with butter, ghee, or coconut oil…. and of course lots of salt.
- Coffee, mainly decaf. On the days I have a little caffeine, I will add L-Theanine, collagen peptides, and a coconut creamer. Vital Farms has a good combo of coconut creamer and collagen combined.
Supplements I take with my breakfast:
- Vitamin D
- Organ Pills from Ancestral Supplements (2-4 capsules) – I will do 4 if I am feeling tired or around ovulation or having my period.
- Liposomal Vitamin C
- Fish oil
- Zinc (to boost my immunity during the pandemic)
- Essential Amino Acids with my water
- I have recently found adrenal glandulars to be beneficial and rotate them in occasionally.
The 3 most effective things for me today are salt, essential amino acids, and organ pills.
Some days I will have had a small snack. If I am hungry, I eat. I do not want to strain my body
Lunch: 4-5 hours after breakfast:
- A mix of meat, vegetables, and fat in either a one pot scramble or back.
If I am tired or had a stressful day I will take:
- PQQ (this is also great to supplement before a workout)
- More amino acids
- I will also do a NuCalm session for 20 minutes.
- I will add L-Theanine if I’m feeling a little stressed.
Liz: We both had a similar “environmental visitor” that was part of our journeys. But yours wasn’t in your home.
I actually moved a few times during my journey, and I knew I wasn’t living in a place with mold.
45 days into lockdown in Spring 2020, I majorly crashed. But not too long after, I started to feel amazing.
I realized I did have mold exposure – but it had been coming from my office.
My company changed offices in September 2017, and my symptoms started in early 2018. The building wasn’t very old (probably built somewhere between the 50’s and the 70’s), but it was always being renovated and the bathrooms were constantly leaking.
I had read somewhere that it can take around 6 weeks after exposure for mold to leave my body, which explains it.
I can’t believe I didn’t catch this earlier, but hindight is 20/20.
Once I finally realized this environmental stressor was having a big impact on my health, I knew I was going to have to increase some detox protocols including sweating.
It took me a long time to be able to use the sauna. In the beginning, it wasn’t an option due to my heat sensitivity.
As I worked to support my mitochondria and heal my autonomic nervous system, I was able to more easily handle the heat.
I eventually invested in a Clearlight low-EMF infrared sauna to break a sweat without exercising.
A new product came out called Higher Dose which is an infrared sauna blanket, which is at a better price point and doesn’t require installation. I haven’t used it, but hear it’s a good alternative.
So when I was feeling ready for it, I started around 10 minutes in the sauna and worked my way up to 30 minutes. I still don’t really do more than that, 30 minutes is enough for me.
Side-note: I learned that mold can be taxing on both the liver and the autonomic nervous system. These two pathways majorly impact blood sugar regulation, so it’s no wonder it was such an issue for me.
Liz: Besides the sauna (when your body was able to handle the heat), what are other things you did in the detox and green living realm?
Mold or not, below is a baseline of how to keep your environment clean and healthy for your consideration:
Katie shares her healthy living protocol:
- Filter water – I use Clearly Filtered. Unlike some other filters, which give you dead water, it filters out all of the bad elements including PFOAs but retains the good minerals.
- Purify air – I use Austin Air and Coway throughout my home.
- Clean personal care – I use clean personal care products and don’t use perfumes. Artificial scents are endocrine disruptors and aren’t healthy for the nervous system.
- Green cleaning products – I use 7th generation products. Don’t even think about using Kaboom or Fabuloso.
- Optimal lighting – I’ve replaced my LED and florescent lights with incandescent (the frequency is much easier on the eyes). The eyes apparently have a lot of mitochondria. I wear blue light blockers at the computer.
- Reduce EMFs – I reduced electromagnetic field exposure. One option is to hard-wire your internet. I have ethernet cords running all over my home. While not aesthetically pleasing, it cuts down on EMFs. If you do use Wi-Fi, keep it way from your bedroom and turn it off over night. EMFs from Wi-Fi routers and cell phones affect the calcium channel. Use your cell phone on speaker or use Air Tube headphones. Magnesium is a natural calcium channel blocker, so if I’m going to be around a lot of EMFs, I take more magnesium.
- Binders – I personally found chlorella to be an effective mild binder. Fun fact: chlorella + sunlight will naturally produce ATP, which is helpful if the mitochondria are struggling. So in the summer, I will take chlorella at the beach.
Liz: You talked about how regulating your autonomic nervous system was a part of your recovery. What are some things that helped you?
In 2014, when I had that 2 week health blip, I learned about the relaxation response and the parasympathetic nervous system through the Henry Benson Institute. Here I learned how to meditate and elicit the relaxation response.
When I got CFS in 2018, I started to recommit to the practice.
My protocol was doing a guided meditation in the morning and the evening.
I later started to experiment with sound therapy during a rough patch in March 2020. Because of lockdown, I was able to do this in the middle of the day. I started with HUSO and then did the NuCalm. In 2020, the NuCalm sound frequency device was still super expensive. Recently, they released a monthly subscription app that you can use with your iPhone for only about $40.
So I was doing the guided meditation, sound frequency therapy, and then ending the day with guided meditation.
And through that, in a period of couple of weeks, I was able to get out of a rough patch and feel significantly better.
Below is the brain retraining regimen I used:
- 30 minutes Reading
- 30 minutes Meditation
- 10 minutes Red-light
- 15 minute exercise (this was where I was at)
- 30 minute sauna
- 20 minute sound therapy
- 30 minutes Meditation (guided meditation + binaural beats while lying on my acupressure mat)
- 60 minutes reading
I continue to use a lot of guided meditation, binaural beats, and my acupressure mat. This is really my go-to combination.
My positive experience with guided meditation and binaural beats is one reason why Dan Neuffer’s ANS Rewire resonated with me more than DNRS, which I know you used.* I had tried DNRS first, but then found ANS Rewire meshed with my personality more.
Dan also tackles the mechanisms behind the stress response, so I was able to kind of bio-hack my way around it by eliciting the relaxation response and eliminating my triggers/anchors.
That’s another thing I liked about the ANS Rewire program. I don’t know if they tackle this in DNRS, but Dan Neuffer would address what he called “anchors.”
*Liz note: ANS Rewire by Dan Neuffer, in addition to the core program, includes a binaural beats meditation and an awesome progressive muscle relaxation meditation. Annie Hopper’s DNRS program does also include two complementary guided meditations. I like both Dan and Annie’s meditations. DNRS also now includes guided health visualizations in their premium community forum, which is $9.95/month. I tried ANS Rewire in mid-2018, then went over to DNRS that Christmas, somewhat the opposite of Katie.
Liz: That’s really interesting, and cool that you preferred ANS Rewire. I’m all about doing what resonates with you. Can you explain what “anchors” are?
Basically it was these associations, if you’re having a crash or a bad day that you were subconsciously attaching these anchors to it.
This totally resonated with me because I would get to the point where I wouldn’t go to the grocery store because so many times standing in line waiting to check out, starting to sweat and wonder, “Am I going to pass out in front of all these people?” And so that, because of the orthostatic intolerance, just gets embedded in your head. Similarly, I would avoid driving to certain places that I associated with feeling terrible.
Dan’s program talks about how you get rid of those kinds of anchors and triggers, which I found to be very helpful.
Liz: According to your helpful free download on your site, one of your 5 pillars of CFS recovery is improving your sleep. Can you share some top sleeping tips?
Adequate sleep is important to heal the brain and mitochondria.
I found a consistent bedtime (10 pm) and pre-sleep routine to be critical for performance the next day.
Here is my nightly routine that I still do. Some of these things I mentioned earlier:
- I use blue light blockers and replaced LED and florescent bulbs with incandescent bulbs.
- I turn screens off an hour before bed.
- 30 minutes before bed, I’ll take Magnesium and Glycine and add L-Theanine if I’m feeling stressed.
- I’ll lie on my acupressure mat + listen to an audiobook + binaural beats.
- If I need an extra boost, I use the Apollo vagal nerve stimulator, which I just attach to my ankle.
Liz: What’s life like on the other side? Do you still keep your healthy lifestyle habits?
It’s great. Since Summer 2020, I’ve been able to work out again, so that’s been awesome. I still maintain a healthy diet, have my healthy routines, and live pretty clean.
I recently started a new job. I was able to go through a rigorous interview process, which was like 10 rounds. I was able to start the new job just fine, which has been more fast-paced, and things are going great.
I am very grateful for where I’m at now.
Sometimes little things can still trigger you. Like even today, when I see people walking down the street with coffee cups, I’m like, “Oh, thy are able to walk in the coffee shop, grab their coffee and go on a walk.”
Today, I can of course walk to the coffee shop, but have to pause and think about whether I can have the coffee. Caveat, I do mainly decaf now.
So it’s still in the back of my head. And I think people can relate to that. But I’m extremely grateful.
I certainly don’t take little things for granted anymore. So in that regard, my life is better than it was before.
And I’m so grateful to have this opportunity to share my story.
Liz: What is your final message to others on their CFS healing journey?
My message is stay hopeful. Don’t let others tell you can’t or won’t get better. Trust the process and listen to your body.
Put one foot in front of the other metaphorically.
Small steps will amount to big steps over time. The important part is not to get discouraged during regressions and plateaus.
Even if you can’t put one foot in front of the other right now, keep hope, keep going, because it’s worth it.
It’s really worth it. There is nothing move valuable that the freedom that comes with autonomy, mobility, and vitality.
Liz: Powerfully stated. And how can people reach you, Katie?
So I have a little blog. It is very little, but it’s called chronicfatigueprotocol.com, and you can hit me up there.
There’s a contact form that’ll send you to my email. Also if you toss in your email, you’ll get a free guide outlining some of the stuff we talked about, if anybody’s interested in the exact steps I took.
Liz note: It’s such a handy guide. There are 5 categories with checklists. She includes the specific strategies & products that helped her. I encourage you to check it out. As a reminder, nothing I or Katie share is medical advice nor meant to contradict what you yourself have discovered to be true.