Paul's Story of Healing Lyme Disease
In June 2012, I was on top of the world.
I just graduated from MIT, with a masters in engineering and MBA — something I had secretly been working toward for years. I was about to embark on the most transformational period in my life — but not in the way I thought.
I. Getting Sick
It started with a cold while traveling for work. I was sitting in a hotel room in New York with the normal dread that anyone gets when they first realize they are getting a cold.
Nooooooooo, not me!!
Okay. maybe I am a little dramatic when I get sick.
10 days in I has a funny feeling, something wasn’t right. I wasn’t getting better. 20 days in, I was legitimately scared.
What is wrong with me?
Nothing, according to several doctors. This dragged on for a couple more months. Fatigue evolved into a mess of other symptoms. Doctors kept running all sorts of tests and assuring me “you are perfectly healthy!”
One doctor tried to convince me it was just depression:
Doctor: You should consider that it could be depression. Depression can cause a range of symptoms in patients including fatigue.
Me: Ok, I mean I am open to anything, I just don’t really believe that I am depressed. I have this irrational positive mentality and honestly think everything in my life is excellent. No wait, perfect. Seriously, I am really freaking happy. Let me ask you a question, can I be depressed and not THINK I am depressed?
Doctor: Well depression can present itself in many different ways.
Me: Do you think I am depressed then?
Doctor: Well no, but fill out this survey, it will help us see for sure and understand your issues.
Me (looking at survey skeptically): Now wait, look at this. This survey isn’t going to be helpful. It asks me if I do less now than I used to. I HAVE to mark this because its true. However I WANT to do more, I just feel like shit. It’s not because I am depressed. (Fills sheet out and hands back to Doctor).
Doctor: OK This score says you are mildly depressed, but I agree with you now. I don’t think you are depressed from what you are saying. However, antidepressants might be an option that could help you sleep and give you energy.
Every time a doctor told me all was well I experienced a sense of relief. As soon as I left the building a sense of dream would re-emerge. I always fought off the urge to run back into the doctor’s office and beg them to continue to look.
Around January of 2013 I finally landed in a doctor’s office where she agreed with me that something was off and wanted to be my “partner-in-crime” to help figure it out.
A sidebar: Some of you are probably guessing where this is going if you’ve lived in the northeast United States: I had Lyme disease. Well not just Lyme disease, but some other nasty tick-borne ailments as well. I’ll spare you the medical details, but it was a confusing disease to untangle. There is a major political battle about this disease. To this day, I’m still not 100% sure if I really had Lyme disease. All I knew was that my body was not working correctly and I found a doctor that wanted to help me get better.
That January I started treatment with a doctor that convinced me it was Lyme. The standard protocol of treatment called for three antibiotics that would rotate on and off over a period of three months. At first I was ecstatic at getting a diagnosis. However, the second day I started taking the medications my body was rocked with so much pain that I didn’t know what to do.
II. Diagnosis and Treatment
Throughout this time, I had been working part-time for my company and the head of our US business was incredibly supportive of me. I was feeling a bit bold and had been staffed on an on-site consulting project in Princeton, NJ. I didn’t know when I was going to feel better so I just thought I could power through. The first week on site was when I got diagnosed. I started taking medication the next day. During the second week, I experienced my first “herx” reaction to the meds:
A die-off reaction, also called a Herxheimer reaction, can occur when treating the Lyme germ, some co-infections, and yeast. It occurs as bacteria or yeast die during antibiotic treatment. It is common to have Herxheimer die-off reactions when starting herbal anti-microbials or antibiotics when treating Lyme (source: Herxheimer Die-Off Reaction)
Sitting in my hotel room in Princeton, NJ I had no idea what to do. I was scared and I was feeling worthless. If I couldn’t work, what good was I?
Returning home that weekend, I had a call with my manager to share with him my frustration. He could likely sense that I was scared and didn’t know what to do. Despite the obvious business and financial repurcussions of me bailing on a consulting project, he treated me like a human and just told me to take some time off and not worry about it. I’m still so grateful that my manager was a true leader when I needed it most.
I ended up taking an indefinite leave of absence from work. Though I didn’t realize it at the time, the time away from work was needed to devote all of my energy not only to getting physically better, but also on my mental health. I was in no shape to be a valuable member of my team at work.
III. Struggling with Treatment (IN CHART FORM!)
When I first started to make sense of all of this in 2012, I started blogging as a way to be open about my struggle. Being open about my journey, despite the bad news a lot of the time, helped me become a lot more comfortable with uncertainty and vulnerability. There were a lot of emotions shared, but coming from a consulting background, I’ve always been fascinated with how to quickly and simply communicate information via charts.
As you’ll see, the beginning of treatment was brutal in terms of my energy level:
“Shittiness Index”: Higher = Shittier
I then started playing with what I came to call the “shittiness index” which was a combination of my fatigue, muscle discomfort and pain. It went over really well with my loving blog followers.
“Shittiness Index”: Higher = Shittier
As you can see, I started to feel better in March, felt crappy at the beginning of April and started feeling better in May, but had a rough finish to the month:
“Shittiness Index”: Higher = Shittier
Around that time, I had a scary feeling that something was still “off.” I trusted my gut and got a second opinion from another great doctor in the area. She discovered that I also had babesia, another common and emerging tick-borne illness in the northeast. They had missed it in the initial screen because they had tested for the wrong strand. I started treatment for that in June and had a terrible initial herx reaction, but started to feel better:
By August I was starting to feel like the end was in sight and that I should go off the medications cold turkey. However, my doctors thought I had more work to do and I followed their instructions.
By mid-summer, I decided to retired version 1 of the shittiness index. I realized that I wanted to focus on the positive. So I gave people a guide of how I was feeling.
This was also intended to help me start thinking more positively. I had been trying to be positive on the blog and to people I would see, but really I wasn’t being honest. I was still wrecked with anxiety, worry, uncertainty and fear.
I still wasn’t sure if I was going to be able to recover.
But before I could take the step towards recovery I had to get my mental health in check.
IV. A Conversation That Helped me Re-Gain Sanity
Over the summer is when I started to regroup mentally. The months of treatment and not working were hell for my mental health. I felt worthless and depressed. Looking back now it is easy to spot, but in that moment it was hard to make sense of everything I was feeling.
A conversation with a friend helped me begin to flip the script.
I was sitting on my back porch telling this friend how fun I was before I was sick and that I couldn’t wait to be that guy again. He quickly responded:
Paul you are one of the most fun people I’ve ever met and I met you after you were already sick
Wow.
I was overcome with shock. I had been stuck in the past, obsessing over trying to be my “old” self instead of just living life. My mindset began to shift from a focus on being sick to one of recovery. The difference may seem subtle, but it was a dramatic transformation.
Identifying as a sick person implied I was stuck in a fixed state. Recovering implied I was moving forward, which I desperately wanted and needed.
I started to make plans again, setting up coffee or dinner with friends. Each day was a victory — I was in control of my reaction to my illness and I was choosing to be in recovery. As I started to feel the momentum, I shifted away from sadness. I stopped looking at my physical challenges as limitations. Instead, I danced at the bar even if I would feel like crap the next day.
V. The End of Treatment
That fall, I continued to feel better and my hunch that I should stop taking medication was getting stronger. However, there were still a lot of lingering issues. The medication itself had taken a toll on my body and it was hard to differentiate Lyme symptoms from side effects from the drugs. Looking back, it was definitely time to stop treatment, but I was still wrestling with the unknown.
What if I’m not fully recovered?
I don’t want to have to go through this again.
I listened to my gut. It was time to move on — I just felt that any additional treatment was going to do more harm than good at this point. My original symptoms of pain, sleep dysfunction and fatigue had disappeared or were a lot better.
VI. Recovery
Starting 2014, I was optimistic, but still overcome with anxiety and uncertainty about my future. This quote from my blog sums up my mindset:
Moving into 2014, I am anxiously awaiting what this year brings for my health. I’ve completely embraced the vulnerable state I am in and fully expect to go through some crappy times. The difference now is that I know how to handle these periods and have the confidence to get through them.
Looking back I was definitely prepared, but still did not realize how much stress and anxiety I was carrying. At this point, the majority of my days were good day, but that meant sometimes I would spend 3 and sometime 4 days a week feeling less than ideal. The antibiotics had done a number on my stomach and I was trying to recover from that. I experimented with many different supplements which had marginal impact, but I now know that what I needed was time.
For someone that was so determined and action-oriented at the time, this was frustrating.
VII. Re-thinking “healthy” / experimentation
Throughout that year I experimented with different diets and exercise. I was eating what I thought was healthy — for example, turkey sandwiches at lunch on bread. Exercise-wise, I was also doing what I thought was best — running. Neither of these things turned out to be true — for me at least.
Historically, I was a fussy eater and scared to try new things. However, towards the end of the year, increasingly frustrated, I told myself that I needed to be willing to try anything and everything. I finally read The Omnivore’s Dilemma, which had been recommended to me several times. This helped shift my thinking from what I saw as healthy and I started thinking about food quality versus my conventional beliefs about food.. As I started reading more and more I was shocked by how terrible my knowledge was around food (Great books like The 4-Hour Body, The Bulletproof Diet and Why We Get Fat helped re-shape my thinking). I experimented with a modified keotogenic diet, paleo and intermittent fasting. The impact from these were considerable. I now had knowledge and approaches with my diet that I could use to accelerate my full recovery.
The next step was getting into strength training, which I started doing regularly in 2015. This is the step that really took me from doing pretty good to feeling amazing. At first, I experimented with the 7 minute workout. I had read the impressive research behind high intensity interval training and was excited to try something that did not drain me the day after exercise (as long cardio sessions had been doing). Similar to opening my mind to a new way of thinking about food, I started learning more about the benefits of strength training (which are considerable) and started doing more. I moved on from the 7 minute workout to the “Big Five” workout. This was a 15 minute strength training workout that I started doing at the gym a couple times a week.
On top of starting to feel a lot better, I opened my mind to question my beliefs about health and fitness. I had believed for years that the key to exercise was long, vigorous workouts. I was forced to look for an alternative because for me, this did not seem to be true. Working smarter, not harder was my only option. As I was seeing gains from my simple, but impactful workouts, I kept experimenting and moved on to dead lifts, squats and kettle bells (a really amazing podcast on strength training that inspired me is here) which continued to improve my energy, mood and strength to this day.
I had to question a lot of my beliefs in this experimentation phase. It helped me be more open minded in all aspects of my life.
If I was wrong about health, nutrition and exercise, what else was I wrong about?
I’m now trying to take what I’ve learned and make it sustainable. One way I think about doing this, I’ve borrowed from Scott Adam’s book: How to Fail at Almost Everything and Still Win Big which he talks about having systems, not goals. If my goal is to gain 15 pounds of muscle, that’s going to be hard to accomplish and may seem overwhelming. So instead, my fitness “system” became very, very simple:
Go to the gym every other day
That is it. It doesn’t matter how many minutes I work out. If I decide once I get there that today is not the day, I go home — and I have, trust me.
This simple system helped me get in the best shape of my life and also help continue my momentum to be feeling the best I had in a long time.
VIII. Lessons
Like I said at the beginning, this is one of the toughest things I have ever gone through, yet it taught me about life.
I also have to reflect that this experience, though bad, makes me realize just how lucky I am. Most people are dealing with something and when you are dealing with something it is easy to assume nobody has it as bad as you. I recently read a powerful holocaust survivor’s experience A Man’s Search for Meaning which made me realize how lucky I am.
I took away found main lessons and continue to reflect on these in all aspects of my life:
Real confidence comes from embracing vulnerability: Life was pretty good for me growing up. I didn’t really face any monumental challenges. When I was experienced pain, I saw myself as somewhat of a failure. After all, “Real men don’t cry” or so the logic goes. Through this, I learned that was bullshit. I didn’t realize anything close to real confidence and courage until I embraced vulnerability.
Real relationships are built on sharing when things aren’t so great: Being in a state of suffering gave me two choices: share or hold it inside. At first, I chose the latter but eventually had no choice but to learn how to open up and share to people “I feel like crap.” The blog really helped with this and gave people an avenue to ask me how it was going. It was shocking to find that this didn’t bother people and that they stood by my side. Before being sick I spent too much time protecting other people from my feelings. Though, I am a relatively positive person, I made the mistake of thinking people only wanted positivist from me. I realized that great friends and relationships are about standing by people in good times and bad and I realized how many I had once I showed them my pain.
Living in the present is the only option: As anyone who has battled a chronic health issue will tell you — this is the biggest challenge. There are many challenges in life where you just know deep down you will get over it (breakups, anyone). With a health challenge, there is always the looming uncertainty of “I may never get better.” It is easy to spend time thinking about this, dwelling on that uncertainty. Trust me, I spent a lot of time doing that — but it only lead to more anxiety. You spend more time in your head than living life. Similarly, you always lose when comparing yourself to a healthier time in the past. It is so easy to idealize the past. When I learned to embrace a recovery mindset, I could finally forward into a new and better future by staying in the present and taking it one day at a time.
Losing it all is not that bad: We spend so much time worrying about “failure” that we lose sight of the things that matter. Whether it is a job, a relationship or material things, losing things is ultimately, not that bad. I had lost my health temporarily and had to slow my career trajectory a bit. At the time this really stressed me out. However, the process of experiencing this loss also made me realize it was survivable. It also helped shift how I think about risk. For example, at work I can take risks, try new things and pursue things I am passionate about instead of trying to fit in and being scared of being fired. Worst case is always losing my health, not my job. In relationships, I can invest in others without worrying about protecting their feelings or losing the relationship. I can live authentically and honestly, which actually helps pull people closer. By thinking I lost it all, I know its not that bad. At the end of the day I still have great people in my life, which is really all that matters.
Visit Paul’s page and learn about help he offers at Think Boundless