This might sound funny, but going to a Coldplay concert led to my diagnoses of having a
chronic illness. If I could thank the band, I would. I had gone to see their world tour when they
came to Seattle, Washington this past summer. I was up on my feet for the amazing 2 plus
hour show dancing and loving it. But the next two days after, I was not loving it. I felt like I had
been hit by a truck, with chronic pain from head to toe in every joint and muscle and
exhaustion that was indescribable. Knowing my own body, I was angry because I knew this
was not normal. I also knew I had given two of my doctors I see regularly a list of symptoms
the last two years that kept getting worst and they basically blew me off and told me to “go for
walks and get more sleep.” I had even asked them to test me for Lyme disease, and both
laughed it off and said it was very rare and again…get more sleep.
After looking into the symptoms I had been dealing with over the past 10 plus years, all signs
kept pointing to Lyme disease. Lyme disease is a bacterial infection typically transmitted
through the bite of an infected tick. It is one of the fastest growing infectious diseases in the
United State, and the steadily increasing number of cases has led many in the medical/
scientific community and legislative arena to deem the disease a “public health crisis” and
“epidemic.” Even more concerning, Lyme disease has now also been Identified in over 80
countries, with many other countries not even being seriously looked at yet.
You know your body and if you are feeling joint pain, muscle pain, depression, severe fatigue,
insomnia, neck pain and stiffness, numbness and tingling in your arms and legs, headaches,
cognitive issues, neuropathy, fever, chills, heart related symptoms and your doctors are
ignoring you, its time to be your own advocate. The 5 minute time block that doctors are now
given with their patients is just enough time for them to type your symptoms into their
computer and then basically treat you like you are a hypochondriac. Its frustrating, its insulting
and guess what…its usually not correct! Now, if you were just bitten by an infected tick,
you might be lucky enough to see a “bulls eye rash” which can be the tell tale sign that you
were infected. But many people never even know they were bitten by a tick and don’t get the
rash.
For me, I finally took matters into my own hands (after that Coldplay concert that tipped me
over the edge! ) and found a Lyme Literate doctor in my area named Dr. Susan Marra. I picked
her based on her specialty with infectious disease, but also because she had been diagnosed
with Lyme disease in her 40’s and I knew she would be sympathetic to the misery that
becomes your new normal. After my initial two hour consultation and dozens upon dozens of
lab tests, the news came back and was exactly what I had told my own doctors I thought it
was. My tests came back positive for two Lyme co-infections of Bartonella. Bartonella are
bacteria that live within cells and find human beings very hospitable. Bartonella henselae is
the causative agent of the notorious cat-scratch fever, endocarditis, and several other serious
diseases in humans. These bacteria comprise one of Lyme disease complex’s most
troublesome co-infections. They can be carried in fleas, body lice and ticks. Dr. Marra told me
very simply, “You are very, very sick.” Which was actually pretty terrifying but also a huge
relief!! Finally I knew I wasn’t losing my mind! But also a bit frustrating since no one can see
you are sick on the outside and your expectations to be a very involved and active part of
society are just as high as they are for a healthy person, except you can barely get out of bed
most days and hurt from head to toe.
We started my treatment immediately and that includes three antibiotics for the first months
and roughly 58 other pills each day consisting of probiotics and an array of medicines for
energy, for pain, for cortisol levels, and so on. Im finishing week 3 of my treatment, but it could
take many months if not years to feel like myself again. I tell you my story because you might
not live in an area known for Lyme disease, but these infected ticks are all over the world and
they don’t discriminate. You could take a vacation to hike, or go camping, then years later…
you are very sick. Don’t ignore your body. You know if you are 47, you should not feel 97!
Don’t let your doctors treat you like you’re crazy. Seek out answers. Be your own advocate.
Because if you don’t, in most cases, no one else will.
Lyme disease can masquerade as many different illnesses, which makes diagnoses very
difficult. If you’ve been tested for Lupus, MS, Thyroiditis, IBS, Arthritis, Parkinson’s Disease
among others and nothing is coming back with answers…the culprit could be as tiny as a
single tick.
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