Who will be the voice for my wife who suffers from Lyme?

by Adam Troy

I am no doctor, I can't even pretend to be, but I have eyes and I can definitely see the toll that this disease has had on my wife. I have seen the number of scoffs from medical officials and the brush off that comes at even the mention that there is something incomplete in their diagnosis. I am, though, a slightly educated person that has a voice and I believe that anyone with a voice should speak up for those who do not have one, for whatever reason. Sometimes people are just so used to trusting their doctors that they just cannot bring themselves to not openly accept what they say. Sometimes people are so scared that they do not realize that they too have a voice in their treatment and medical care. Sometimes people believe that because the doctor has to be so smart and is required to do the right thing every time that they allow themselves to be convinced that they are wrong or crazy, or depressed. Sometimes patients are just too tired of the fight (the everyday fight to exist, to face another day of pain and suffering, to put on a happy face) that they just stop.

My heart goes out to those that don't have anyone to fight for them. I have seen the struggle of constantly explaining things to friends and family. Explaining why she can't do something today or why she can't make it to the family function. I have seen friends turn their backs on my wife and I because they just could not understand what she struggles with. I have watched her cry because she just doesn't want to deal with it anymore. I have watched her walk away from a job that she loved, where she was able to help people, she was able to be a part of a bigger cause than herself. I tried for a full a year to convince her that her health was more important and now I have to watch her wrestle with that realization. I watch her cry over not being able to enjoy her granddaughter. I feel the financial, burden of dealing with a disease that the system believes is a myth.

 
I have wanted to sit down and tell her story so many times but have struggled over how to do so. Do I tell you about coming home from a vacation and realizing that there was something wrong with her? Do I tell about going to doctors who only wanted to prescribe narcotics and then treat her like a criminal after doing so? Or the many doctors that came after and just couldn't figure out what was going on? Or how many times doctors have looked at her with a smile and told her not to worry saying, "Let me worry about this"? I don't know if there was anything as disheartening or, for that matter, infuriating, as the doctor that refused to run the tests that we knew should be run and then just said "it's all in your head". 

 
To that doctor and to those like him I hope that they never have to walk a day in my shoes or, heaven forbid it, a day in hers. I would not wish this on anyone. I could not conceive of putting this on another person. But what will it take? How will the system that so adamantly refuses to acknowledge the existence of such a wide spread problem actually begin to believe the oath they took when they became doctors? What has caused the medical community, except for a few, to close their eyes to an epidemic? How can 300,000 newly diagnosed cases each year, according to the CDC, be written off as somatoform disorder after a round of antiquated treatment doesn't work? Where is the humanity in this? Who will be the voice for these people? Who will be the voice for my wife? Though it may just be a small voice in hurricane I cannot be quiet. I will not be quiet.

 
"I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may out weigh the surgeons knife or chemists drug." This is part of the Hippocratic oath. Where is this in the treatment of Lyme disease? How much sympathy is involved when the answer is simply, it must be in your head? There is no warmth or understanding involved when there is no real attempt to find a cure. The only thing that is done here is that the doctors are choosing not to become martyrs on a cross, they are choosing not to disagree with the CDC. My thanks goes to the doctors who HAVE staked their career on the fulfillment of this oath. I believe that you took your oath seriously and truly did care for your patients and some have paid dearly for that. I believe that the only way to change anything is try to be the change, so we have nothing to lose, I watch my wife carry her cross every day, I carry it for her most days so I will not let that be in vane. There must be a change.

 
"I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skill of another is needed for a patient's recovery." More from the Hippocratic oath, Where is the consultation with others? Is it pride that keeps doctors from admitting that maybe they don't have all of the answers? Pride has no place here, your pride is a poor substitute for the sufferers' basic human dignity. Call in as many doctors as you have to, we're not afraid of another doctor. Anyone suffering from Lyme has seen enough doctors that they are no longer afraid, if the next one can get closer to an understanding. Calling a condition that you do not understand psychosomatic is lazy, it's more than that, it's demoralizing. You don't have to hear my wife beg me to believe her. Every time without fail, she begs me to reassure her that I believe she's not making this up. When a doctor says that, they plant the seed that the sufferer should just give up and that all of the people who have walked away were right to do so. You plant the seed that they need to give up because there is no hope. YOU ARE WRONG!! I will say it loud because I have nothing to lose. THE CDC IS WRONG, THE IDSA IS WRONG!! Any doctor who wants to tell my wife that she is not sick, "YOU ARE WRONG!!"

The Oath goes on to say that doctors do not simply "...treat a fever, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems if I am to care adequately for the sick." So, here I am, the voice of the affected family. I want answers, I want real answers to the questions I am asking. I am not asking what she is suffering from, I know that. I am not asking what her treatment will be, I know the answer to that. I am asking when will she be given validation and seen as sick human being and not some lunatic to be disregarded. I have seen the rashes, they are not in my head. I have seen the seizures, they are not in my head. I have seen the tears, they are not in my head. I have sat through every doctors appointment and heard every confused answer from every doctor who was too proud to say what they know to be true or too afraid to run the right tests because they didn't really want to see the answer, these are not in my head. Subsequently, I have picked up every prescription that should never have been prescribed because a doctor felt like he had to say or do something. A word of advice: A simple I don't know would be better than an unnecessary medicine. But that's the rub, most of you do know, you know damn well what is going on and you won't say it because it will cost you too much.

 
"I will prevent disease whenever I can, for prevention is preferable to cure." I've said before that I am no doctor but it seems to me that you cannot prevent something if you refuse to look at it when it's right in front of your face. If a gun is being held to your head, closing your eyes does not make it go away. Look at the facts, these are numbers from the CDC's own survey conducted in 2012, concerning the recovery time for Lyme patients who were treated by the IDSA guideline's from 2006:

-39% were treated for less than 4 weeks (consistent with IDSA) 
-20% were treated for 5 – 8 weeks 
-36% were treated more than 8 weeks 
-5% did not receive Tx
(https://www.lymedisease.org/alix-mayer-cdc-2/)

 
It's interesting to me that more than half of the diagnosed cases require treatment beyond the IDSA guidelines. I am a numbers guy, I work in sales, in evaluating the effectiveness of one of my employees all I have to do is look at the numbers. The numbers don't lie. As a matter of fact, I am held accountable to those numbers and if they are consistently short of where they need to be then I have to rethink what I am doing and change them or else I get fired. Who is holding the CDC and the IDSA accountable to their numbers? There are over 3,000,000 cases of Lyme in the U.S.. alone. Those are the diagnosed cases. How many people are suffering in silence because doctors just don't have an answer? How many more cases would we see and treat in this country if there was legitimacy given to those we already know about? Someone has to answer these questions. Is it our doctors? Senators? Governors? The President? I say yes to all of them. They need to hear our voices. One small voice in a hurricane will get lost but if there are enough small voices then eventually someone hears and maybe a rescue can be made.

Adam Troy is the loving husband of Lisa Quinn Troy who is one of the many sufferers of Lyme Disease. He is also a General Manager of a construction staffing firm. Adam is an advocate for change.