True courage is in facing danger when you are afraid.
— L. Frank Baum
Kathleen had her first major (i.e., grand mal) seizure on Saturday, December 12, 2015. She was formally diagnosed with epilepsy the following Monday, December 14, 2015; but, if that news was not bad enough, at around 7:00 p.m. on the evening of Saturday, December 26, 2015 — the day after Christmas! — two young, male police officers, a middle-aged, male detective, and a middle-aged, female DCF agent, showed-up at our home’s front doorstep.
After we were discharged from the hospital on the evening of the 12th I found myself to be in a daze for several days. My mind was spinning out of control and I felt completely lost. Little, however, did I know how much the situation was about to change — for the worse!
Kathleen’s middle school had planned a dance for the early evening of Friday, December 18, 2015, just before it was scheduled to close for the Christmas break. Concerned about the possibility that Kathleen may have a seizure while at the dance, my wife, Amy (also an alias), offered to be a chaperone. Amy, who is a second generation Irish immigrant behind her father, knew the school’s counselor, who was also a former DCF agent, from our local Irish club. Amy had a conversation with the counselor, whom I will refer to as Cathy, and Cathy suggested that we have Kathleen tested for Lyme disease. Cathy told Amy that her family had a vacation home located near Lyme, Connecticut, and that her brother had been afflicted with Bell’s Palsy, which occurred some time after he was bitten by a tick. Cathy also told Amy that Kathleen’s symptoms sounded like classic Lyme disease and that it would be a good idea to have her tested.
As soon as Amy told me about her conversation with Cathy I jumped into action. First, I placed a call to Kathleen’s pediatrician’s office to inform her doctors of the situation and to ask if they would be willing to order a Lyme test. Fortunately, the doctor to whom I spoke was amenable to the idea, which, given all of the controversies surrounding the disease, was a big deal. I took Kathleen to have her blood drawn and then delved into learning all that I could about the disease; and much of what I discovered was terrifying!
Somewhere around midday on December 24, 2015 I received a call from the pediatrician who ordered the lab tests. The doctor told me that Kathleen tested positive for Lyme disease and that we should start her on antibiotics. After receiving the diagnosis I actually felt somewhat relieved and hopeful. We now knew what was actually wrong with her and could move forward with a treatment that would rid her of all of her problems . . . or so I thought. Unfortunately, however, I did not fully appreciate or grasp the scope of the diagnosis.
During the very first evening that Kathleen started the antibiotics she had a bad Herxheimer reaction (more on this later) but, fortunately, she got through it. Eventually, I found a Lyme Literate Doctor (LLMD) in our area and also stumbled upon the documentary “Under Our Skin.” And, after viewing the documentary (more than once), I became utterly horrified!
I began sending e-mails to our local children’s hospital to express my concerns and, when I was told that, essentially, the people there did not believe that Kathleen had Lyme disease and that they would not treat her for it, I, basically, told them that they had been negligent — something that they obviously did not like hearing.
One of the hospital’s office staff members, who was not present when Kathleen was examined by the ER doctors, was tasked with dealing with the situation. She responded to my concerns/complaint by filing a fraudulent DCF complaint against me; and in the complaint she claimed that I told the doctors that I wished that I had a “Magic Bullet” to shoot them with so as to make them more empathetic. She also purported that I claimed to believe that the “Newtown shootings were a hoax.” Neither of which was true.
In my defense, I argued that, in our home state of Connecticut, hospital personnel are considered “mandated reporters” and that if the doctors and staff had released us — or, more specifically, Kathleen — from the hospital if I had actually made those horrific claims that they would have been even more negligent than I had claimed. I also provided the DCF agent in charge of the investigation with a copy of a poem and a letter that I sent to each and every one of the Sandy Hook families two years after the tragedy occurred, which clearly indicated the sorrow that I felt for the tragedy that they had to endure.
Following a grueling twelve week investigation the hospital’s claims were found to have no merit and the case was dismissed as “UNSUBSTANTIATED.” In the end, though I was relieved that the case was dismissed, it took a very heavy toll on me and my family.
One of the most important lessons that I learned from the experience is that the controversies surrounding Lyme disease are extremely real and should never be taken lightly — a point further reinforced by the original Under Our Skin Documentary.
Eventually, I also would learn how fortunate we were to be living in one of only six states at the time that had enacted laws to protect doctors who were willing to treat patients with Lyme disease on a long-term basis with antibiotics.
Bottom Line: If you or a loved one are one of the unfortunate many who has been afflicted with any of a host of tick borne illnesses then you will need to be extremely careful about how you proceed — especially if you live in a state that does not recognize Lyme as a “real disease.”
That said, you should also take comfort in the fact that times are changing, thanks in large part to the number of infected people who are now speaking out. You should also know that there is so much more information regarding naturopathic treatments that is readily available to patients .