My story

I remember thinking that the world around me was a blur, all the lights and sounds muffled as I stared down at my hands gripping the shopping cart.  I was in Walmart of all places.  I felt sweaty, dizzy, and the left side of my body was uncomfortably tingling and numb all the way down to the bottom of my foot.  I remember having recently researched B vitamins, and how a B-12 deficiency could cause numbness and tingling all over.  I just kept repeating “B-12” out loud to myself as I walked slowly down the aisle looking for a bottle with that label that would hopefully put a stop to this feeling.  My mom was visiting that weekend, and as we walked back to the car the symptoms started to fade slightly and I felt a wave of relief.  We were on our way to a spa to get massages and have a fun, much anticipated mother-daughter weekend.  I was able to relax and enjoy myself, but I remember a nagging feeling that something just wasn’t right.  In fact, something hadn’t been right for quite a while, and I couldn’t even remember the last time that I had actually felt well and felt like myself. 

The timeline is a little hard to put together, but I had been feeling so easily anxious and exhausted for months.  I was frequently having awful migraines which I had never experienced before in my life.  I think that was the start of it, but I can’t pinpoint exactly when it all began.  I keep trying to retrace the months and the symptoms and every detail over and over in my mind – back to the moment when everything changed.  Back to the moment that I didn’t realize would change my life forever.  Back to the moment when I was bitten by a tick and contracted Lyme disease.  And it sounds so simple, doesn’t it?  It sounds crazy to think that something so small, potentially the size of a poppy seed, could have this effect on my life.  Even reading these words as I write them, it all sounds simple - but nothing about this disease is simple - literally nothing.  I’m going to share this brief version of my story in the hopes that this might help someone else suffering with Lyme or another chronic illness to get their life back.  This story is nothing but my life and certainly doesn’t paint the last few years in a glamorous light, but it’s the truth.  It’s my truth. 

I still can’t determine that exact moment when I was bitten.  I will never know when and where it happened for certain, but at least now I know what I am dealing with, which in my mind is half the battle.  I can’t tell you how unbelievably terrifying it is to have strange and debilitating symptoms for years and have countless tests done only to keep hearing that nothing is wrong, that all tests are normal – and all the while, to keep getting worse and worse by the day.  It was January of 2019 when I had my first extreme “Lyme-y” episode, which I at first thought was another migraine, and then after too much late-night googling I had convinced myself it was caused by a brain tumor.  It lasted about three weeks, and it was severe.  Headaches, dizziness, nausea, numbness, exhaustion - and nothing would make it go away.  And then, just like that, it did.  I had finally forced my primary care doctor to order a brain MRI, which came back normal, of course.  I was then on a two month wait list to get in to see a well-known neurologist in the area.  He did not pinpoint my Lyme, but I thought of him at the time as a very kind man and he was one of my favorite doctors.  He listened to all my concerns and ordered so many MRI’s and so much blood work that my insurance company started to deny coverage.  At least I thought my bases were covered and I appreciated his genuine concern and thoroughness.  He was testing for everything under the sun including MS, autoimmune diseases, and nerve/muscle diseases – all of which came back normal.  He said I was a healthy young woman and attributed my migraines to stress and hormones.  I left feeling relieved and like I could get on with my life.  I was wrong. 

About a week later, I was in the conference room at my office and felt a sharp stinging pain just below my right kneecap.  I shook it off and thought maybe I had tweaked something during my Pilates class, or that possibly my runner’s knee was coming back (an old injury from my early twenties).  After a couple weeks the pain was in both knees, and I was struggling to walk without pain, so I made an appointment with my orthopedist.  He laughed and said I was too old to have runner's knee (which no one wants to hear at 34) but was convinced that I had patellar tendinitis and assured me that a few weeks of physical therapy would help.  I had seen this doctor and physical therapist previously for my knee injury and again when I severely shattered my wrist snowboarding – I trusted them both completely and I knew I was in good hands.  After a few more weeks, it was so painful that I could barely drive and walk the short distance to the building where the PT office was located, let alone do the exercises without excruciating pain.  The prescription anti-inflammatory medications and Ibuprofen did absolutely nothing to cut my pain and suffering, and all I did was rest and ice, ice, ice.  Nothing helped, and it only seemed to be getting worse.  After a couple months of this routine, I started feeling extreme pain in my inner knees on both sides, and both knees looked red and slightly swollen.  One day, I sat in my car in the parking lot and just sobbed.  I couldn’t go in.  I couldn’t do any more exercises.  I could barely move.  I called my doctor and my physical therapist, and they both agreed maybe a few weeks off to rest would be the best idea. 

Eventually I talked my orthopedist into ordering full MRI’s of both knees, which cost a fortune like everything else and came back completely normal.  NORMAL.  There wasn’t even a trace of tendinitis showing up.  In fact, the radiologist said it’s very rare that he ever sees such “normal” knee scans.  I was relieved and infuriated at the same time.  Again, there was no explanation for my pain, but it was a relief to know that nothing was torn or frayed or damaged.  There was nothing structurally wrong. 

I had a follow up appointment with my neurologist in September, and my migraines were more under control.  He seemed confident that my knee pain would resolve itself.  He told me to stop googling.  Based on things I had been reading online, I asked him to run a Lyme test and a rheumatoid arthritis test.  Both came back negative.  NORMAL. 

I decided to go down a different avenue, in a desperate attempt to regain my health and find some answers.  I was willing to try anything.  I’m not saying that I am against alternative and spiritual forms of healing, but I had just never considered trying them myself.  At my first appointment with my functional medicine practitioner, she performed body talk and muscle testing, and we discussed an overview of my life, my pain, and my current diet.  I am proud to say that I went in with a completely open mind – and thank goodness for that because it was a surreal experience.  I said “Heather, I think you are a psychic” after she had analyzed me and my emotions more clearly than I could analyze myself.  She also told me that there was very obviously something that my body was holding onto that needed to come out.  I had no idea how right she was.  We then discussed diet and supplements that she wanted me to try.   I informed her that she must be trying to kill me when she said I needed to reduce overall inflammation – AKA no gluten, dairy, soy, corn, or added sugar.  Ugh.  At our second appointment she did reiki and acupuncture, neither of which I had ever tried.  I cried the whole time because I am absolutely terrified of needles, but it was amazing to see that the swelling knees went away instantly.  It came back, but still, it did go away for a few hours.  Heather was the only person who had ever really expanded on the possibility of Lyme and explained that there was a more accurate test than the standard Lyme test.  She hadn’t seen other patients whose symptoms presented like mine, but she said if I didn’t improve, we might consider looking into the IGeneX test.  I didn’t think much else of the conversation because I had already had a Lyme test - and it came back negative. 

In early December I saw another orthopedist for a second opinion.  I was partially hoping he would just shoot me up with cortisone or some other concoction to numb the pain, but he wanted me to first see a rheumatologist to make sure it wasn’t something systemic. 

I should go into more detail about how life was in general during this time.  I hate to sound dramatic, but it was basically literal hell.  The thought that replayed over and over in my head was this: “I feel like I am in a nightmare and I can’t wake up.”  It became increasingly difficult to do anything.  Driving, working, or social gatherings were starting to become few and far between.  My legs were so painful and red, and slightly swollen.  And I felt tired constantly, so tired.  I felt as though I could sleep for a month.  I barely had the energy to sit up.  Most of my days were spent counting the hours until I could lay on my couch again.  Even that wasn’t comfortable.  Nothing would alleviate the pain.  By November I could barely make it upstairs to take a shower, and I spent most nights sleeping on the couch to avoid the stairs as well.  Every outing was carefully planned as to where I could park, how much walking there was, and if there was a single stair that I had to encounter.   I started using crutches to get around.  Stairs were the enemy.  During the holidays, my brother was a lifesaver.  I was devastated to miss going down to Florida to see my family, but I knew I couldn’t do it on my own.  I could never walk far enough to get through the airport or carry my own suitcase.  I didn’t even have the energy to do laundry or pack and I couldn’t stand for more than a couple of minutes at a time.  My brother offered to pick me up and drive me to the airport.  Even the morning of our flight, I wasn’t sure if I could go and I was pretty much having a meltdown.  He made some calls and arranged for priority seating and a wheelchair, and I was reluctant but couldn’t have been more grateful.  I felt like an 80-year-old, but I was so relieved to be whizzing through the airport while my brother made me laugh despite my pain and we embraced the circumstances.  I certainly have a new level of empathy for the disabled.  I couldn’t do much even when we got to Florida, but it was so nice to be there and see my family.  While we were there, things actually got even worse.  It was all I could do to even get out of bed.  My whole body hurt.  In addition to the knee pain, my lower back, hips, hands, and feet and ankles were hurting.  My right foot started to swell.  I was experiencing episodes of blurry vision, and nausea.  I had major GI issues – I’ll spare you the details.  I felt like I was falling apart.  I was sitting with my brother on the couch at my mom’s one morning, and I cried and told him how scared I was, and that I was so afraid I was dying.   He held my hand and told me not to worry, we would somehow figure it out. 

After the holidays life returned to “normal,” which for me meant continuing to google for hours a day in search of answers.  I came across an article in one of my many tendinitis searches that was titled “I was 30 and in a Wheelchair: Chronic Lyme Nearly Ruined My Life.”  My heart stopped.  Every word and every line sent chills down my spine.  That was me.  Oh my God I thought, maybe I DO have Lyme disease.  Could it be possible?  I’ll be honest, I didn’t know much about Lyme, hadn’t ever given it a much thought.  And I had no idea it could cause the symptoms I was experiencing.  I decided that no matter what, I had to at least rule it out.  I instantly did a search for Lyme specialists in Northern Virginia and called the first practice that popped up.  Their website had countless accolades from patients, and the lead doctor was published for his research in the field.  The woman who answered the phone was kind and understanding.  She asked what my symptoms were (the worst ones) and said “well honey, it sure sounds like you have Lyme.”  I actually felt annoyed and a little defensive by that statement, how dare she say that when I hadn’t even seen the doctor yet!  I was grateful they had openings and booked an appointment for the following week. 

It took all my energy just to hobble across the parking lot and walk through the building to get to the office, but it turned out to be one of the most critical three hours of my life.  I immediately felt comfortable with Dr. A.  She was kind and sweet and patient, and we have the same birthday (day AND year!) which I think is a sign that she was meant to be in my life, as corny as that sounds.  She quietly and intently listened to me for over an hour as I went through every symptom and ache and pain, and every previous doctor I had seen and all of the tests they had already done.  When I finally stopped for a breath, I tried to read her face for a reaction.  She simply said it could be Lyme, or it could not be.  She had never seen it present exactly as what I was experiencing, but it was certainly possible.  She then did a physical exam and an EKG.  I agreed to do an extensive blood work panel, to check everything under the sun, as well as the IGeneX test for Lyme and Bartonella, which is one of the many possible co-infections that can enter your body when you are bitten by a tick.  When they came in with about 14 empty tubes of blood on a cart, I laughed and told the nurse that she had a busy day ahead of her.  She said I might not want to laugh because those were all for me.  Did I mention I hate needles?  I finally left feeling very lightheaded and drained, literally.  It would be a couple weeks for results to come in, and as many as four weeks for IGeneX because it was sent to a lab in California.  I’ll be honest in the back of my mind, I truly thought that I did not have Lyme, but at the same time I was intrigued by everything I had read and just needed to know for sure. 

In the meantime, I finally went to my appointment with the rheumatologist.  I was convinced that I had some awful form of debilitating arthritis, like RA or Psoriatic Arthritis, the symptoms all fit.  And I was terrified.  This doctor was a bit quirky, but I liked him at first.  He had those round glasses with thick black frames that made him look like a bookworm.  He also listened to my story intently and reviewed previous test results, then completed a physical exam.  He said he was pretty much ruling out everything that I thought I had and wanted to see the “other” blood work that the Lyme doctor had ordered.  He was not interested in the actual Lyme test.  He also wanted me to get some joint x-rays to check for joint erosion or signs of disease.  When I mentioned that I had gone to see a Lyme specialist, his demeanor changed, and he half laughed, and half snorted as he blurted out abruptly “you don’t have Lyme!  I’ve seen patients with Lyme arthritis, and this is not it.”  I told him I just had to make sure for myself, and then I asked him what he thought was wrong with me.  He scratched his beard and said “Well, I’m not sure.  I’m pretty baffled.  I guess some type of tendinitis probably.”  Hm, great.  I practically rolled my eyes as I made my way out of there.  I was annoyed and very surprised at his reaction and response.  That was my first encounter with the controversy in the medical community over Lyme.  He told me to schedule another appointment in three months and I made a mental note to cancel that appointment or at least find a different doctor within the practice. 

A couple of weeks later the blood panel numbers came in, and everything literally everything was normal or great, actually.  My doctor wasn’t concerned about any of my levels, and none of the inflammatory markers were high. 

But then, a week or so went by and I got an email with the IGeneX results.  My doctor wrote: “Your results are significant for active Lyme disease.”  Holy shit.  I immediately started crying, and almost felt like the weight of the world had lifted from my shoulders.  Just having an answer, just to finally know what was wrong, was more relief than I had ever felt in my life.  I thought that’s great, I’ll take some antibiotics and be cured.  I am sending so much love to the sweet innocent version of myself who had no idea what lay ahead on this long and arduous healing journey.  I literally feel like I have been to hell and back.  Almost back.  I’m getting closer every day. 

If you take anything away from this story, please let it be this: don’t ever doubt yourself and your intuition.  You know your own body, and you know when something isn’t right.  Learn to trust yourself and be your own advocate.  Your truth is all that matters.   There is hope in the darkness of illness, I promise. 

One of my saving graces throughout this journey has been talking to others who have been there and have gone through some of the same experiences.  I have leaned on them so deeply for support and guidance along the way.  I have been working with my own health coach for over a year now, and it has truly been one of the most uplifting and life changing decisions of my life.  After going through such a harrowing health journey – well who am I kidding, I’m still living it – I have an unwavering passion and desire to help others going through this same journey of Lyme and other chronic illnesses.  I have recently launched a coaching business of my own.  I haven’t doubted for a second that this is my reason and my path in life, I have never felt more sure and more grateful to be able to help others heal and transform – even thrive – during illness.