Frustration. That is the most common emotion that I feel
these days. Lyme disease will do that to
you. Some days I feel like the list of “cant’s”
grows exponentially every day. This
disease is one that has reached every system in my body. Lyme disease is often called “the great
mimic” as it often takes the characteristics of many known diseases. Some days I wish that I had one of the “known”
diseases, as I think that others would have a better idea of what I am up
against. As it is, even I am surprised
daily by the strange symptoms that appear.
No two cases are identical, which is one of the reasons why this disease
is so difficult to diagnose if you do not catch it early enough (as I did not—I
was hospitalized with a severe case of mononucleosis, when I really had
Lyme!) Today, I struggle with double
vision and muscular weakness from a secondary neurological disease caused by
the Lyme. I tremble, shake, and have had
seizures. I live in constant fatigue and
spend the lion’s share of most days sleeping. Body aches, joint pain, mental
fog. This is only a few of my long list of daily struggles. I have many emotions concerning this. Feeling like my life is passing before me is
one of them. Loss is another. So much that I mourn not being the mother I
want to be. Not being mentally sharp
enough or energetic enough to have a career to help pay for the mountain of
debt that I have accrued due to my medical expenses is depressing to me. The money and time and sanity that I have
lost trying to figure out for 13 years what was wrong with me is among the
grieved losses as well. I wished before
I knew why I was ill, and continue to wish so much now for healing. In April
of 2011 I received a ray of hope
that I would not have to continue in this health tailspin and loss when a
doctor finally culminated all of my medical records, history, and labs and
suggested the diagnosis of Lyme (and confirmed through testing)—a complex
illness that did in fact hold some hope for treatment and recovery. Little did I know what a difficult path that
would lead me down.
After a 13 year journey to find a diagnosis, finding a
doctor proved to be another difficult step.
Navigating the quacks, the doctors who side with the IDSA and refuse to
“believe” that chronic, late stage Lyme exists (this still baffles me, but that
is a whole other issue entirely), and those pushing treatments that would
exacerbate my Myasthenia Gravis seemed to rule almost every doctor out. After a few hiccups, we finally found one in
Missouri whose track record and method of treatment agreed with my symptomatic
challenges and needs. August 2011, I
made my first journey to Missouri to see the doctor. Since then, I have cycled through 4 different
antibiotics as well as a host of other drugs and supplements that help my body
in the war against these bugs. Each
antibiotic is specifically chosen for its effects on the Borrelia Burgdorfieri
bacteria’s different life cycles. Each
one has brought its share of side effects, as well as the Jarisch-Herxheimer
(or die-off) reactions. Herxheimer
reactions are a positive signal that the Borrelia is dying, but because of the
neurotoxins released by the spirochete as it dies, too severe of a reaction can
weaken the body and render it too weak to fight, so it is a tricky balance to
keep. I have had a hard time keeping the
Herxheimer reactions under control thus far.
This gives me hope that I am on the right path, but keeps me constantly
guessing whether I need to switch up dosages or do something different. I have just begun taking Flagyl, which has
become well known for its “effectiveness” (translation: this is the drug that
will give you the worst herx reactions yet!).
I have been on it two days and can already feel some of the caustic
effects, but I press on because I have hope that I will be able to live free of
this disease and all of its trappings some day!
This is Holly, filled with hope, on her way to the doctor in Missouri!
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