I have Lyme Disease.

I’m sitting in the backseat Saturday listening to the rain beat steadily against my car in the parking lot of Roosevelt Island.  The outer bands of Hurricane Matthew are sweeping over DC and the sky is gray for miles around.  I’ve just finished an 8.5 mile run on the muddy canal and I am beyond exhausted.  Dried off and changed, I nibble on a snack as I watch the torrents of rain wash across the windows, thinking it shouldn’t be this hard.  Running in the rain on a muddy trail is my thing – it doesn’t get any better.  But my run was anything but freeing.  I felt fatigued, my stomach hurt and my body ached.  I thought I wasn’t going to make it back to the car.  And now,  I’d rather sit in my backseat for hours watching the torrents of rain distort the river and trees before me, thinking about nothing in particular, than make the effort to move and drive home.

When I finally pull myself awkwardly up between the two front seats to put the keys in the ignition I have the peculiar feeling everything is about to change.  It’s fleeting, but I feel as if my answer is just out of reach.

Yesterday I returned to my doctor to review blood work I had done about a month ago.  Not only has my iron and ferritin levels plummeted again, but my vitamin D is low despite taking 4000 iu every day, and my magnesium and iodine is low as well.  My body is no longer absorbing essential nutrients, most likely because of the intestinal metaplasia. It’s why every day I fight to have enough energy to function for my daily tasks, let alone running and actually training for races.

AND – I have Lyme Disease.

I’ll admit, this one I’m still having trouble processing even though it makes sense symptom-wise.  Lyme Disease is very complex and controversial and I know I have a long road of recovery ahead of me.  I’m not going to go into the controversy here because I’ll just exhaust myself but it’s one I’m quite familiar with, especially after working in the public health industry.  I have many options as to what I can do and what I can believe, making treatment quite confusing.  My doctor believes I’ve had it for quite some time now and long-term Lyme poses even more challenges, but what else can I do but put my trust in her and hope?

It’s funny because my journey to get well started way back in May 2015 when I went to my primary care doctor in search of answers.  I was incredibly fatigued, my hair was falling out, and I had a general feeling of malaise.  Although it wasn’t on her radar, I asked to be tested for Lyme Disease because I’ve always been an “outdoorsy person” – running on trails, walking in parks, and camping.  She agreed (although reluctantly) and I was happy to hear a week later I tested negative.  Then, I wrote my fatigue off due to low iron and my doctor told me the rest of my symptoms were due to stress and lack of sleep.

And here I am now with a slew of other issues now needed to be treated.

I don’t regret the other doctors I’ve sought out over the past year, nor am I angry about my then-primary telling me I didn’t have Lyme.  Again, the controversy surrounding this disease is so complex and because there are two different schools of thinking around Lyme some doctors are going to believe I have it and others will not.

I’ve been bitten by several wood ticks over the years but I can only remember one deer tick back in the sixth grade.  I remember the day distinctively even though I was only eleven.  I remember feeling an ache in my arm pit and finding it in the bathroom during lunchtime.  I went to the nurse and when she told me it was a deer tick I started crying, feeling as if it was the end of the world.  A wood tick was no big deal to me and over the years I had several pulled off me by my parents after camping trips.  But I knew the difference between deer ticks and wood ticks because of my Dad’s careful teachings, and I knew all about the perils of Lyme Disease.  My mom picked me up from school early and took me immediately to my pediatrician who looked at the bite where a small rash formed.  She told us if I didn’t develop neck pain, fever and flu-like symptoms I would be in the clear.  The symptoms never came and I never had any blood work done.

It’s been 15 years since the deer tick and I honestly don’t know a damn thing about how it works, like if I could have contracted the disease from this tick in particular and I carried it this long until it was triggered.  But what I do know is many deer ticks can carry Lyme Disease and are the size of the period at the end of this sentence.  There’s a chance if I was bitten again I never even saw it or felt it.

So what now?

At the moment I’m in the process of gathering many recommended supplements and vitamins which I need to start taking immediately.  Once I’ve been taking those steadily for about a week I am to start a dose of antibiotics.  If all goes well I’m supposed to start taking another antibiotic at the same time and from there monitor if I make any improvements in energy and other symptoms.  I’ve also been instructed to follow a strict yeast-free and gluten-free diet so I’m not super thrilled about that, given my love for delicious brews.  But I’m trying to do whatever it takes and luckily, I have a lot of support.  My cousin is helping ease me into a more plant-based diet and lots of family and friends are given me gluten-free alternatives.

As for training…I’ve taken everything off my schedule for the rest of this year.  I’m still going to stay active and run when I can, but I don’t want the added stress of trying to prepare for any shorter races.  I’m trying to focus on my runs being fun, slow and easy so they can relieve stress instead of add to it.  I have big plans for next year and I don’t plan on giving them up any time soon, I just may have to adapt my “training” the next few months to something much more manageable depending on how the medicines affect me.

It’s a really odd feeling to have an “answer” after all this time, and I think it’s why I’m having trouble accepting the news.  My doctor believes most of the things I’ve struggled with over the past year or so could be related to the Lyme: the fatigue, headaches, brain fog, numbness in hands/toes, stomach issues, stress fractures and joint pain.

So now I’m just left with hope.  Hope that after treatment I’ll finally feel like me again.

 

© Allison Donaghy 2016 All Rights Reserved

 

 

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