When I first began navigating my diagnosis a few years ago, I joined some online Lyme support groups to get information, emotional support, and understanding. Within the first few weeks, I was painfully aware of how epidemic this disease was. There were literally thousands of people in these groups who had eerily similar stories to my own. We were all years in the making of no diagnosis, misdiagnosis, and waiting for a cure. We all had the same experience of many doctors who laughed in our faces, denied our pain, threw anti-depressants at us or didn’t help us at all. Some of us even lost family or good friends because they doubted the existence of a stealthy bacteria as the reason for all of our problems or just got weary of helping us.
I immediately formed a connection with these fellow “Lymies,” as some of them call themselves. One of the first to reach out to me and help me wade through the deep waters of the many layers of Lyme disease was a man named, Mike (or as he was known in most Lyme groups, Six Way Lymie.) He tirelessly fought to bring awareness to tick-borne diseases and to help others figure out how to go about testing, treatment, and pain remedies. He gave of his time and his strength, when he had it. He was a warrior for the group.
In the past few weeks, several of our own have lost their fight with Lyme Disease. One of them was Mike. We were not close and I didn’t know him personally, but at a time in my life when I was drowning in research, medical paperwork, and doctors orders, Mike threw out a life raft – he gave me simple and practical advice that I now pass on to others in the Lyme world. “Do what your body tells you to do.” I’m paraphrasing his words, but it was something very simple. That was it. It was a comment in a thread with many other comments, but I remember it because it was helpful and it smacked me in the face with some truth when I needed it the most.
I needed to know in that moment that it was ok to move on from a certain treatment, regardless of what others were telling me to do. I wasn’t listening to my body, even though everything in me was telling me to move on from oral antibiotics because they were not working and my body was fighting treatment. Someone’s comments rose above the others and I heard it clearly, go with my gut. Listen to my body. I did and I’m better for it now.
If IV is the right choice for you, do it – don’t let the fearful talk online scare you. It just may put you in remission. The natural route may be best approach, or a combo of antibiotics along with natural remedies might be what fights the infection best in your body. Everyone is different. Listen to the doctor you trust the most and those whose opinion you value who love you, but ultimately the choice comes down to you and your body. Do what’s best for YOU.
My doctor fully believes in the mind body connection and I am starting to realize just how powerful that connection really is. I don’t believe you can “will yourself to be well” or anything like that and neither does my doctor, but I believe that when you are trying to get better, you must be emotionally healthy and shut out the negativity in your life to heal the best you can physically. Science even backs it up. Stress and emotional pain causes heart attacks, cancer, and many other health problems. I needed a simple reminder to shut out the world, listen to my body, and do what is best for me. I will continue to pass on this wisdom to others in the Lyme community and throw a life raft to others that are navigating similar waters. Mike left a legacy in our Lyme community and he will be missed.
I thought it would be appropriate to end this post with a song my friend wrote a few years back when I was in the throes of this disease. He wrote it after I mentioned that I was having an off night with song writing because it was a “full moon” and I explained that many Lyme suffers can be negatively affected by the full moon. Because of the reproduction cycle of Borrelia, the spirochetes seem to be more active during the full moon phase and “come out” from burrowing in joints and muscles during this lunar cycle, which in turn makes the pain very intense. I have migraines, severe joint pain, and flares in inflammation during the week of the full moon. You can read more about it here: Full Moons and Lyme Disease
At the time that I told Josh about this I wasn’t even aware he was even paying much attention. I get very used to people tuning me out when I’m talking about Lyme. (Not that he would, just that I have gotten accustomed to it!) Sad but true. No one wants to talk about disease, pain, or the daily problems of a chronic illness. I had no idea that, not only was he listening, but he was empathizing. He went home and wrote this beautiful song that sums up so much of what Lyme disease is for me and the Lyme community. I am humbled and thankful for the friends I have that truly listen and care about me and my family.
I dedicate this song to those who have lost their fight with Lyme Disease this month. Mike, JoAnn, Annie, Lucy, and Julia – I am so sorry for your pain. You fought hard and you fought well. Thank you for spreading awareness and giving hope to our community, even when you were struggling to feel hope yourself. I hope you can rest now. No more pain. No more frustration. No more struggle. We are praying for your families and friends. You are not forgotten and we will curse the moon for you…
This recording starts when Josh is in the middle of setting up the song. He gave a shout out to Lyme Disease Awareness month and even explained the disease to the audience, but I missed recording it. I came out to support my friend in his musical endeavors and was not expecting to hear this song, so I apologize in advance for my lack of videography skills. I was crying and trying to hold my phone still at the same time. The lyrics just get to me…
Curse the Moon
I’m holed-up on a hill top until the sun fades away
‘Cause my work begins at the end of the day
While most lay their heads down with schedules to keep
I’m practicing words I was raised not to speak
Silent I kneel, set my gaze toward the sky
And wait for the clouds to divide
Then under the shining night
While others watch and woo
I look to the porous light and
I curse the moon for you
There’s more to this world than our eyes take in
Chaos held back by a veil, wearing thin
But New London county has a story to tell
Where some rogue tore it open and caught a ride out of hell
And now, as a passenger, fights for the reins
Contempt for the charge of your veins
O, poets will praise it’s face
Love songs often do
But I’ll stand firm and make my case and
I’ll curse the moon for you
O, bless the hands and the seeds that they sow
But I’ve designed a course of my own
Whate’er names in orbit pass
Harvest, Blood or Blue
None hence shall escape my wrath
I curse the moon for you
Joshua Vorvick 2014
For all of you in the Lyme community that are suffering, please don’t suffer alone. Reach out. Take heart and have courage. We are all here for you. Please try again tomorrow…