Lyme

Lyme Disease: One step forward and two steps back

For the last few years I have been battling some pretty serious health issues and it’s taken a real toll on my mountainfancy time.  It all started with a sore neck, that continued to ache for weeks.  I thought, oh just too much yoga, too much climbing. Weeks turned into months.  I didn’t feel like myself at all, was I depressed?  Then the constant headaches started.  Headaches constant and so severe that no amount of ibuprofen, naproxen or acetaminophen could alleviate.

Then the cognitive issues began.  Am I losing my fucking mind? Things weren’t making sense,  people weren’t making sense, I couldn’t stay awake.  I was sleeping 14 hours a day.  I was struggling at work.  I had no motivation to do anything, and that was the scariest part.  Everything I loved didn’t matter anymore, I just felt so weird.

To put it into a timeline, the neck pain began in mid-August, headaches soon after that, and by the end of October I couldn’t move my head or neck without severe pain.  I went to my GP who immediate prescribed me with a cocktail of pain killers and muscle relaxers and a script for an MRI of my neck.  On the follow up visit (irremarkable MRI results) I had to insist that something was wrong.  I begged him to do blood work.  I pleaded with him that I wasn’t just being “emotional” that something was really wrong.  “Please test me for Lyme.”

I had done my research on WebMD, and thought it was pretty likely I had Lyme disease.  My dad brought it up actually, “You sleep outside, you’re going to get ticks.” Dear old Dad was right.

It took about 2 weeks for me to get the results back, and when my doctor finally confirmed that I did have Lyme disease, it was already November.  I was immediately prescribed 200mg per day for 60 days of Doxycycline, a heavy duty antibiotic used to treat bacterial infections.  I was relieved to find out that I wasn’t losing my shit. And for the first time in a really long time, something made sense to me.  I was happy to start the meds and I was hopeful that I was on my way to feeling like my old self again.

For the first few weeks on the meds, I was sick to my stomach.  I felt WORSE than I had ever felt before.  None of my symptoms were getting any better.  I missed out on Thanksgiving and Christmas.  But soon, the “brain fog” that I had been experiencing began to lift, and I was able to read books, have conversations, and began to slowly feel more and more like myself  again.  It’s been years and I’m still not 100% myself, every day. There are good days, and there are bad days where my body aches and I’m mental and physically wiped out, for no reason.  As my friend Janelle said to me “It’s like one step forward and two steps back, all the time.”

It’s been a constant struggle with doctors and health care providers.  Lyme is a regionally based epidemic in New England and the Mid Atlantic. Traveling thoughout the northeast, I’m finding that I am meeting more and more people who are dealing with this disease and are struggling finding the support, answers, and treatment they need.  Everyone’s symptoms can be and ARE different, there is only one approved “treatment” for the initial infection, but nothing to help the lingering effects of the disease, and those who suffer from chronic Lyme.

I just want to put this story out there so that maybe it will raise more awareness in lyme prevention, but also to inspire you to pay more attention to your intuition, and question prescriping physicians.   I would love to hear your stories and encourage you to reach out to me with your stories at Mountainfancy@gmail.com

 

<3 Kelly

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