Today I went against my better judgement and saw, again, an Infectious Disease Doctor. I am still so upset and am beside myself. I brought my mom in with me as witness, fearing a repeat of the last time I agreed to see one. My only other experience with I.D. abruptly ended with the doctor slamming his fist, shouting "If you're here to talk about chronic lyme disease, you are barking up the wrong tree!" I cannot even comprehend how these "specialists" are allowed to continue to practice, and even worse that they are the so called "experts" in the single fastest growing infectious disease today.
What will happen when 300,000 people this year contract Lyme Disease and they visit these doctors that continue to ignore science, the studies, and their patients? Will these hundreds of thousands so desperate for help be sent away, told there is nothing wrong with them and it is "all in their head"? Perhaps they will be diagnosed with another illness, and receive inappropriate and dangerous treatments. Or, if they are one of the few who are properly diagnosed, will they receive the appropriate therapy?
Tragically, all of the above scenarios lead to more cases of chronic lyme! These stories continue to be played out over and over; time and again; this is nothing new. Whether from misdiagnosis or inappropriate treatment, these patients will remain ill. Here begins the journey of the chronically ill; being shuffled from one specialist to another, misdiagnosed each time, continuing on a path of lifetime illness until finally they become disabled, are unable to work, are financially ruined, abandoned by the medical system, and ignored due to the political climate and left to die.
Sadly, I have yet to hear of an Infectious Disease Doctor that is as knowledgeable as even I, the layperson, when it comes to Tick Borne Disease. Whether it it because it was not learned in medical school, or the grossly flawed and politically motivated guidelines set forth by the IDSA were forced upon them, the outcome is the same; hundreds of thousands of people who are suffering are turned away without appropriate care.
I went today with hopes that maybe this time, he would at least listen. I hoped he wouldn't ignore my my substantiating test results, and he would agree I have a concerning problem. I hoped he cared enough about his patient that he could put aside his political beliefs and excercise some good old fashioned empathy. I hoped we could together discuss concerns and explore options. I hoped he wouldn't ignore the science. And I hoped he wouldn't lie.
I was careful to not "push" lyme disease on him, suspecting he would react defensively. Instead, I listed my symptoms, showed him my medical tests, first mentioning in passing I had a "history" of Lyme. I stressed to him that I was indeed "open" to another diagnosis, if he could offer one. I truly believe I went far "above and beyond" in making sure I didn't attempt to play doctor, or diagnose myself, by continuing to ask, "what do you think it could be", knowing of course, all the while, exactly what it is I am suffering from. I wanted it to come from his mouth. Why must we "play dumb" anyway, simply to boost their egos? And although I didn't expect complete acknowledgment, I did expect the courtesy and professionalism at the very least, of being taken seriously. I had hoped he would at least "pretend" to take seriously my concerns.
I have just learned I have lesions in my brain and he dared to suggest I was merely suffering from anxiety! I am terrified nearly everyday that I may not survive this and he minimized it, belittling me in the process. I wish he could know what it is like to be stripped of everything; job, career, home, independence, health, friends, money, self respect, confidence...(the list goes on)..only to be told it is something in my control!
If it were ignorance it would be upsetting, yes. But his manipulative twisting of the facts made it nothing short of criminal. To tell someone who has lost all that they lived for there is nothing physically wrong with them is telling them they are to blame for the very ruin of their life. How could anyone be that cruel? Especially as it was evident he was supporting his pre-ordained agenda; how skillful he was in making all the pieces fit to his liking. The blood tests that supported his view were considered accurate, while ones that supported mine were faulty. How can a medical doctor behave in such a way? He was the one who kept repeating "it is science" (most likely to stifle any belief I had that Lyme is a clinical diagnosis, despite CDC claims) ; there was nothing "scientific" about his explanations for my symptoms!
1. My positive Babesia test he ignored. My negative Lyme test he did not. He told me the blood tests are definitive, I did not have Lyme due to a negative test and I did not have Babesia despite a positive one....how can that be??
2. He called my Lyme Literate doctors "voodoo" doctors and IGENEX "pseudo science" labs. These voodoo doctors are responsible for nearly all scientific studies regarding tick borne illness and come from hospitals like Columbia and John Hopkins.
3. He made light of my Babesia diagnosis; suggesting that it is a "non-disease", with no symptoms, thus requiring no treatment and therefore of no concern. He went on to admit the only concern would be if I were to donate blood if I had it. Where's the problem there if it is of no consequence? Am I missing something?
4. He dismissed my dangerously low vitamin D levels as a result of wearing "layers", and avoiding sunlight in an effort to shield myself from the sun to protect against melanoma. My bout with melanoma was 3 years after the vitamin D test and I was working outside everyday. He also suggested I might have been tested during the winter; I was living in the desert at the time of the test, where daytime temps never reach below 80 degrees and the sun shines everyday. I also was taking 30,000 I.U. daily! Why was he so determined to offer any explanation to discredit this test?
5. My abnormal EKG and echocardiograms were not at all considered, though he did make copies of them. I can't wait until our next appointment to hear his explanations on how they could have been the result of anxiety!
6. He copied my neuropshych evaluation as well and I suspect he will no doubt hone in on the one statement in there that mentions depression, while not giving any credence to the findings on my impaired cognitive function.
7. When I asked about my MRI full of lesions, he stated it could be due to MS. When I reminded him that MS never presents with an abnormal EMG he changed the subject.
He persisted in finding a "reasonable" way to discredit everything I presented. Why was he so fixated on "being right" rather than simply answering my questions and attempting to resolve the "mystery" of my illness?
It is a sad day when either due to ignorance, corruption, politics or ego, a physician's goal becomes a game of outwitting the opponent rather than treating the patient. What's more disturbing, is how trivial his win is, compared to how great my loss.
Funny thing; I wasn't at all experiencing any anxiety until following this appointment. I had to come home and take a xanax I was so upset! And depression, something not even present in my makeup, is just now starting to set in....it's one thing to be as sick as can be, but quite another to be told you're not!
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