Who You See Matters!
Author: Paula Jackson Jones
Orig Published: 11/03/2017
There
is a phrase that the Lyme community uses that has upset the rest of the medical
world ~ Lyme Literate Doctor. This phrase has been developed and used to
specifically to highlight those who are highly educated and experienced in
diagnosing and treating Lyme and tick-borne diseases. They are heavily
networked with other Lyme Literate providers and consult with on difficult
cases. When this phrase has been spoken
in a primary care physician’s office, the conversation can take a sudden
downward turn. Most doctors that I’ve
spoken with who are not considered “Lyme Literate” take great offense to this
phrase because they feel that it implies that they are “illiterate”. The Lyme
community uses this as a basis when seeking out a provider who has vast
knowledge about the fastest growing, multi-systemic, complex, infectious
disease.
I
personally have no qualms whatsoever about using it. I think it pays honor and
respect to those providers who saved my life. I went through 23 different
doctors and specialist who could not figure out what was medically wrong with
me and who misdiagnosed me many times over. And I continued to grow sicker with
every passing day. Lyme Literate Providers
who, knowing that they live or practice in an endemic region, take it upon
themselves to study and learn on a continuing basis about new strains, new
diagnostic tools and up-to-date treatment protocols. Researchers from Yale and
John Hopkins are consistently discovering new strains that existing protocols
do not respond to. They are constantly running trials to find new treatments
that combat, slow down and potentially eradicate the bacteria. Lyme Disease and
Anaplasmosis are not the only concerns Maine residents need to be concerned
with. We have Babesia residing here and that is a malaria-based tick-borne
disease that does not respond to the typical Lyme Disease treatment of
Doxycycline. The treatment protocol for Babesia is so completely different from
Lyme and Anaplasmosis, even though early in its infection state, it can mimic
Lyme. So many tick-borne diseases start off mimicking Lyme so when a patient
present to the PCP saying they were bitten by a tick and the doctor runs a Lyme
test, often it comes back negative. The
CDC has gone on record to state that the existing ELISA test many doctors run
in their offices is at best 40% accurate.
So, with a negative test, the patient goes home and if infected, it
slowly spreads.
So why
is it important who you seek out when you think that you’ve been exposed to a
tick-borne disease? A few weeks ago, I
wrote about the Two Standards of Care that providers follow. Both
scientifically evidence-based guidelines however, one set (IDSA) is outdated
and has been removed from the National
Guidelines Clearinghouse (NGC) while the other set (ILADS) remains current and
in effect. The NGC is an initiative of the Agency for Healthcare Research and
Quality (AHRQ), under the umbrella of the U.S.
Department of Health and Human Services. The NGC recently adopted the Institute
of Medicine (IOM) standards for developing trustworthy guidelines, which define
the highest level of excellence that a guideline can achieve. Guidelines posted
on the NGC website must now satisfy these standards.
Current guidelines here: National Clearinghouse Guidelines
What is frustrating for
patients is that medical providers are so divided on this matter that it has
greatly influenced whether insurances will cover doctor visits and much needed
treatment protocols. At one time, there were two equally divided sides in this
battle. However, since 2013, the CDC has acknowledged that there are flaws with
testing and even treating. They have started participating at national Lyme
conferences, sharing what they know and helping to pave the way to
collaborative efforts ~ all in the name of patient care. Sadly, there seems to
be a third party that has developed. It’s the medical community that continues
to adhere to the outdated guidelines and turning a blind eye to anything else and
it is their patients who suffer because of it.
Because those patients see providers who are not aware or who refuse to
acknowledge the faultiness of the tests, who are not knowledgeable about the
complexity of tick-borne disease and therefore do not recognize how it
manifests in a patient’s body at chronic levels. These are the same doctors who
continue to throw 14 days of antibiotic at bacteria that has a 28-day life
cycle. The very same who dispute chronic
Lyme even exists.
There are available educational
tools, workshops and conferences for providers who want to know more about Lyme
and tick-borne disease.
But as for the patient, it really does matter who they
see. You want to see someone who uses up-to-date protocols, who is deeply
knowledgeable about these diseases and who is heavily networked with other Lyme
providers who can step in and consult when needed. By definition, these doctors
are working in the best interest of the patient.
[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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