Monday 18 February was a holiday — so no going to work, but I worked hard nonetheless. I broke down and put on a suit & tie with a nice pair of Lucchese Classic black cowboy boots, and attended a medical convention at the request of my fiance’s primary care physician. I was invited to give a presentation to about 300 doctors about what it is really like to be a healthcare advocate on the “front lines” every day about a disease that many in the healthcare community believe is not as bad as it is, or some who even believe that the disease does not exist.
In the not so distant past, I was labeled…
a hypochondriac by a couple doctors for reporting symptoms that do not usually manifest with this illness, and for doggedly pursuing answers as to why they were occurring, and not giving up.
It is a very very long story, but in case you did not know, my fiance was quite ill all last year (and still has not quite recovered) from an infection caused by three different organisms transmitted by a tick when he was bitten in our back yard some time. The disease was probably in his body for a long time. We did not know he had it until it began displaying really awful, debilitating, and frightening symptoms in November, 2011. And all.last.year. Every day, every hour, it was something. Dizziness, confusion, pain, fatigue, brain fog, nausea, more pain, … on and on. Violent temper and mental breakdowns were frightenly frequent.
My presentation was about how some patients are so sick that they cannot think straight, and cannot remember what they were told, or what to do. (The confusion is an unfortunate symptom of the illness.) People in this condition require an advocate — someone who cares and cares “hard” — to pursue why the symptoms were occurring and to convince medical specialists to order tests and then provide appropriate treatments if test results prove positive.
Further, health insurance companies capitalize on patients with this disease being in such a poor mental state that they cannot fight denials of claims. But a well-armed, well-informed, healthcare advocate can do that. But this post is not about the horrors of the health insurance industry.
Rather, my presentation was to thank my fiance’s physician in a public setting for listening. Listening well. His doctor admitted that he was not as knowledgeable as he could be about this odd infection and its effects. He realized that something was seriously wrong, and the standard treatments were not working. Partnering with me, he pursued a legal but seldom followed treatment protocol, and adjusted it as necessary when various forms of antibiotic treatments did not resolve the illness.
What I valued most is that this doc maintained an open and inquisitive mind. As my fiance was continuing on the horrible roller-coaster of debilitating symptoms, and realizing that the first course of treatments for one infection were ineffective, I introduced the concept that perhaps my fiance had more than one type of infection. Tick-borne illnesses sometimes are not just caused by one type of organism. I was convinced by two factors — that the symptoms were not abating despite antibiotic treatment and that certain additional symptoms were occurring — that my fiance was infected with a second, and perhaps third, additional tick-transmitted infection.
He was told by many specialists “those particular organisms” do not exist in our state. My point was, “why not test for them and rule them out?” The health insurance company would not pay for such tests, but I felt the tests were necessary so my fiance paid for them — big time. Those tests weren’t cheap!
And lo-and-behold, my theory was proven correct. The initial tests were equivocal (that is, not clear), but subsequent, highly specialized tests, confirmed co-infections by two additional organisms. The doc then prescribed a treatment protocol that was complex. I ensured it was administered to the letter, as my fiance was unable to handle such complexity. I.V. infusion and over 30 pills over a 24-hour period, changed every two weeks, for FOUR months finally broke the cycle of infection and my fiance slowly but surely began to recover.
Some docs think that caregivers — people like me who live with someone who is seriously ill — run to the internet to find information about what could cause certain symptoms. Docs are very dubious about “diagnosis by internet” for good reason. Most of what people find on the ‘net is inaccurate, outdated, or scary. They run to their doctor demanding treatment for something they do not really have.
Instead of jumping from the internet to treatment, I did two things that made all the difference with my fiance’s physician: First, I showed him the research (websites) that I found, and explained logically how I arrived at my suspicions of the underlying causes of my fiance’s symptoms. This was very complicated, because many different things could cause the symptoms, so we had to rule out these other possibilities by getting tests. And that was the second thing I did: instead of demanding instant treatment, I demanded tests. I would often say, “if you don’t think this is a possibility, what test would rule that out?”
I feel sometimes that my fiance became a “pin cushion guinea pig.” He had many tests that indeed ruled out various possible infectious organisms and related diseases like Lupus, Multiple Sclerosis, Fibromyalgia, and other neurological disorders. But we hammered a home run when to the doctor’s and my amazement, infections by rare, never-seen-in-our-state-before, disease organisms were found.
My presentation focused on how to do medical advocacy using the internet as a research but NOT diagnostic tool. That’s what tests are for — they are diagnostic tools. With test results, treatment plans follow. A doctor who listens, and recognizes that a well-informed advocate is not a hypochondriac, who does independent research and arrives at his own conclusions — that happen to be the same as the advocate’s — can truly help. My main point is that advocates and doctors can and should be partners working toward the same goal.
At the end of the presentation, I was humbled by a standing ovation. My fiance, who was there, shed tears, as I did. Most of all, his doctor gave me a big hug right there on stage with a warm thank-you.
Life is short: show those you love how you love them!