Marred Expectations
Author: Paula Jackson Jones
Orig Published: 12/13/2017
There
are times in our lives when our expectations are marred by the reality of the
situation. Take the holidays for example. Children behave as best they can, sit
on Santa’s lap and leave milk and cookies, in hopes of finding a new bike,
Xbox, pony or puppy under the tree Christmas morning. For some, those
expectations are met. For others, the expectation is marred by circumstances
whether it be due to financial issues or some other issue beyond the
comprehension of the youngster.
Beyond
comprehension is where Lyme patients reside. They don’t feel well so they go to
their medical provider with the expectation that they will be treated and
returned to good health in a quick fashion. Back
in 2009, I had the expectation at that initial visit with my medical provider
that I would find answers and get better and when that didn’t happen, visit
after visit, provider after provider, I began to lose hope of ever feeling
better again. Each day, I woke with the sunken expectation that someone would
ever figure out what was wrong with me and help me to get better. I just
couldn’t understand how all these doctors that I saw were unable to get me
better and once diagnosed in 2011, I couldn’t understand how all those doctors
missed what was wrong with me.
Now it’s 2017 and patients with tick-borne
disease are still facing that same marred expectation...WHY?
Getting
to the Why a patient remains symptomatic is the biggest hurdle a medical
provider faces and using fallible diagnostic tools and following outdated
guidelines and antiquated protocols, they might as well be blindfolded and have one arm tied
behind their back.
World
re-known Lyme and tick-borne disease expert, Dr Richard Horowitz writes, in his
2013 book, “Why Can’t I Get Better?” about
diagnosing, treating and healing Lyme, and peeling away the layers that lead to
chronic disease. Practicing in Hudson Valley NY, a hotbed of Lyme Disease, he
quickly realized that many of the chronic disease diagnoses people were
receiving were also the result of Lyme and, in the absence of timely
intervention, could cause disabling conditions. In a field where the number of
cases is growing exponentially around the world and answers remain elusive, Dr.
Horowitz created a 16 Point Differential Diagnostic Map, the basis for his
revolutionary Lyme treatment plan and an overarching approach to treating all
chronic illness. He introduces Multiple Systemic Infectious Disease Syndrome
(MSIDS), a new lens on chronic illness that may prove to be an important
missing link. He covers in detail Lyme's leading symptoms and co-infections,
including immune dysfunction, sleep disorders, chronic pain and
neurodegenerative disorders - providing a unique functional and integrative
health care model, based on the most up-to-date scientific research, for
physicians and health care providers to effectively treat Lyme and other
chronic illnesses. In 2017, he published “How Can I Get Better?” a follow up
book outlining and mapping out well established and effective treatment
protocols. Having treated over 12,000 patients with extraordinary progress, his
outline represents a crucial paradigm shift, without which the suffering and
marred expectations will continue.
Order your books here: www.amazon.com
There is medical misunderstanding that
Lyme is hard to get but easy to treat and that we can apply acute protocols to
chronic diagnoses and patients will just naturally get better. What other disease would be treated is such a
negligent manner? Would a cancer patient be allowed only one round of treatment
and denied further treatment? Would an MS patient be shut off from their meds
after 30 days? As a society, we know that is an unrealistic expectation. As a
Lyme community, we know from experience that there is no one-size-fits-all
approach to treating a patient afflicted with Lyme and/or tick-borne disease and,
yet many providers are doing just that.
So where do these marred expectations
come from? Patients have the understanding that their primary doctor can solve
many, if not all, of their medical issues however, unless they are personally
trained in the complexity of tick-borne disease, that is a marred expectation. Another
misconception that mars our expectations is the notion that “broadly
accessible” and “widely available” means “patient affordable”. Many find their
insurance company denying their medical visits or necessary treatment coverage
and out of pocket expenses leads to an incomprehensible desolation. I talk to people daily on the phone and via
email, sobbing and expressing a desire to regain health and their fears of it
never happening. As I wrote about several weeks ago, who you see determines the
outcome of your diagnosis and recovery.
I
believe opening our hearts and minds to changing the status quo and increasing
education by integrating experts knowledgeable on Lyme and tick-born disease
will greatly reduce marred expectations and produce a more healthy and abundant
community.
~ Paula
[Paula is the President of the MLDSE, the Maine-partner
of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne
Workgroup and active in Maine’s Lyme legislation. You can reach her at
paula@mldse.org]
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