My Experience with Lyme - and How I'm Beating It

dana mook, personal trainer, acac charlottesville
Me on a backpacking trip, circa 2008

 

Summary:

  • The Mystery Illness: My first run-in with Lyme Disease
  • Deja-Vu: My Lyme relapse
  • My Treatment: How I’m coping with it

The Mystery Illness

My life changed radically in 2008, when I decided to move from my home state of North Carolina to Virginia. It was a huge move, leaving behind my home and old job and trading them for new ones, not to mention leaving friends and family behind. However, this is something I chose to do, and was looking forward to a new adventure.

But there was something else that happened, too, that I did not choose.

On moving day, I woke in the morning with my hands feeling dead, as if I had slept on top of both of them all night. I thought it was pretty odd, but brushed it off as maybe sleeping in a weird position. I’d also been extremely stressed the night before about the logistics of the move (to keep a long story short, something about the moving truck). I figured I’d let myself wake up, move around, and all would be well.

Hours later, things still felt off. I still had that rush of pin-prickly sensations running through my hands and fingers. But I was too busy to dwell too much on it. It was time to pack up the truck, the car, and make the 4-hour drive up the highway to my new home.

And then, well into the drive and winding up the mountain roads on the state border, both my feet fell asleep. It still is one of the most horrifying moments of my life.

This was an extremely stressful time. I was unpacking and settling into a new home, in a place where I didn’t know many people, starting a new job two days later, and all the while feeling as if my body was under attack by a mysterious source. In retrospect, I’m sure all these life-changing events and the feeling of missing a large part of my support system didn’t help matters.

I continued to feel pins-and-needles, like electricity and sharp shooting pains, in my fingertips, toes, and sometimes my tongue. Life went on; however, things were getting worse – I wasn’t sleeping well (I’d wake in the middle of the night, feeling like my heart was racing), I’d sometimes feel a sudden sharp pain in my chest at random, I was feeling inflammation in my joints and would often ice my wrists during the day at my computer (I was working a desk job at the time). Plus, I was riddled with chronic UTIs. I continued to feel as though under attack.

Doctors couldn’t determine what was going on. I had multiple tests done – blood work to check my vitamin and mineral levels, neurological tests, cardiac testing with a monitor I’d wear daily, MRIs. No one could give me an answer, except, “You’re probably just stressed out.” I was made to believe that this was all in my head, that I was imagining it as a product of stress. Yes, I was stressed. But I knew I couldn’t be feeling all this if it wasn’t real.

Sadly, months later, after all the doctors visits and tests, I gave up. And eventually, my symptoms began to subside. The last thing to go was the pins and needles. They’d become the “new normal” in my life. They took five years to completely go away.

Deja-Vu

Fast-forward to August 2017. Being a new mom to a beautiful six-month-old baby boy, my life was once again filled with a bit of stress, though I was learning to handle it well. The biggest struggle was dealing with the variety of summer colds I seemed to keep catching again and again. My immune system was not what it once was. I felt tired all the time. I chalked much of this up to my son picking up germs from other kids, in addition to the stresses of motherhood.

The day of my relapse, I’d woke the night before with a painfully sore throat (but no other cold symptoms, which was strange), not being able to sleep no matter how badly I needed to, a huge headache, and feeling weak overall. Despite my lack of sleep, I continued the day as I normally would – teaching a fitness class, doing yard work outside as my son napped, etc. I came inside from the hot sun feeling faint and extremely dehydrated, despite filling up on water throughout the day. After showering and feeding the baby, I cuddled on the couch with him, feeling as if I should go to sleep. Luckily, my husband was home and when I noted that I didn’t feel good, he felt my forehead and said, “Oh no, you’re burning up!” We took my temperature – 103.6. My neck was also feeling very sore. I suspected meningitis, hoping I was wrong, hoping it was just another crazy virus that was going around.

Taking my symptoms seriously, we headed to the ER. At the hospital, I felt so faint I requested a wheelchair. Everything hurt due to the muscle pain I was experiencing all over – getting my blood pressure taken, getting the IV inserted in my arm (during which I screamed, startling the doctors). And then, lying in the hospital bed and shivering due to the high fever we were trying to break, my arms both felt as if they had been asleep and were “waking up.” That feeling was all too familiar. I described what I was feeling to the nurse. I asked, “Is the IV supposed to make me feel this way?” To which she replied, “Try not to worry about that right now.” It was deja-vu.

The ER doctor asked me if I had been bitten by a tick recently. I couldn’t recall, but I did tell him I had multiple ticks on me after a camping trip nine years ago. (One month before my initial symptoms appeared.) Rewind back to 2008, when I began seeing doctors for my mystery illness. My physician had asked the same question, except adding, “Did you have a bulls-eye rash?” I said no. I knew he was ruling out Lyme Disease. And with my answer of “No” to the bulls-eye, Lyme was immediately stricken off the list.

These days, however, it is becoming more common knowledge that you do not have to have a bulls-eye rash to get infected with Lyme. Perhaps doctors are more knowledgeable on Lyme now, too. In my case, it appears that way, or perhaps I was simply unlucky and did not have Lyme-literate doctors at the time. Either way, I instinctively knew that this time, my experience would be different. I actually had a good feeling, despite feeling like a total wreck, that my mystery would finally be solved. The doctor ordered a Lyme test for me, and days later, the hospital called to confirm. I’d tested positive for Lyme Disease. I was immediately put on antibiotics.

My Treatment

Today, I have a compassionate, experienced Lyme-literate PCP (primary care physician) who is blending traditional medicine (antibiotics) with herbals for my treatment. I also take plenty of probiotics to keep my gut healthy. A month later, I am feeling much better. The lingering symptoms after my initial 10-day antibiotic course were the pins-and-needles and feeling faint (especially after standing up too fast, being in the sun, or in humid environments). Today, I’m happy to say that only the pins-and-needles remain, and they are subsiding. I am feeling healthy and strong again.

Everyone with Lyme has a different experience, which is why Lyme can be such a mysterious disease that is challenging to diagnose and to treat. I am sympathetic to those who suffer from it, as it can be quite debilitating for some. I wanted to share my experience here not to tell anyone what to do or specifically how to treat, but to let you know that having a good support system in place (at home, socially, and medically) are essential to beating Lyme. With varying symptoms that are not always visible, but more so things that you feel, it can be difficult for others to empathize. Look to those who believe you, care about you, and have your back. Choose compassionate doctors who are recommended by others who have had Lyme and who support you. If you suspect you may have Lyme – even if you can’t remember ever seeing a tick on you (they can be very tiny) – insist on having a blood test done. Don’t settle for less, and don’t give up. I wish I wouldn’t have given up all those years ago, but I know that’s easier said than done.

Fitness has also helped me in my battle against Lyme, even before I knew I had it. Looking back, my pins-and-needles had finally gone away all those years later around the same time I became more physically fit, and began working as a group exercise instructor. Again, everyone’s experience will be different, but I believe it is crucial to keep the body strong and moving in some way. Low-impact exercise, such as aqua classes and gentle yoga, may be good choices for those with Lyme, at least initially.

I believe stress played a big role in triggering both my first onset of Lyme and my recent relapse. Again, exercise is important for me, as it releases tension from my body and releases feel-good endorphins that, simply put, make me feel happy. But I also need to keep stress in check with mental exercises, including meditation, visualization, and deep breathing.

Finally, diet has also worked wonders for me. I’ve found recently that by reducing my sugar intake and consuming less caffeine, my muscles feel less fatigued and my joints less pained. Sugar and caffeine are known as sources of inflammation in the body, which is something folks with Lyme often have to fight. Other possible inflammation triggers are gluten, dairy, and sometimes meat. Again, it depends on the person. Your doctor may recommend an elimination diet – eliminating one suspected source at a time – or it may be something you’ll want to try on your own.

I am on my way to kicking Lyme out of my life – hopefully for good, but at the very least, avoiding a flare-up. Lifestyle modifications, a solid treatment plan, and an excellent support network are my keys to healing. I hope that if you are suffering from Lyme, you will find the things that work for you, too. I am always happy to lend an ear and offer my support to you. Contact me if you wish to chat or share your story.

All my best,
Dana