We've all heard this before, and many of us know it firsthand to be true. Disease is unfair, and it strikes us without warning or discretion. Yet there is one thing we have come to expect from living in the United States -- that the medical and legal systems are here to support us all equally and fairly. Sounds great in theory, but when put to the test, if you're a round peg, good luck fitting in the square hole.
Perhaps the most obvious frustration that comes to mind is that there is never one person to hold accountable when something goes wrong, no single "throat to choke" as it were. These systems were created with the goal of protecting everyone, but have been architected to protect those who write and enforce the rules. The doors are open to everyone, but for many there is no way back out.
Greg Eckenrode of Colorado has a situation that illustrates the nonsensical paradox of our medical/legal system. Including Greg, nine people in his family have Lyme disease. Greg and his wife contracted it separately as children, but their four children inherited the complex and debilitating disease from his wife, congenitally.
I was in touch with Greg just recently, after he was released from the Denver Detention Center in Colorado. Through no fault of his own, Greg wound up behind bars for three weeks over a doctor's disagreement of a diagnosis and treatment for his wife's son. I'll explain why in a moment, but first I'd like to give those who aren't familiar with Lyme disease a little background on what it is, and what life is like for those who have it.
The symptoms of Lyme disease are varied and numerous including memory problems, confusion, extreme fatigue, flu-like symptoms, swelling, headache, back, neck, joint, and bone pain. It can also cause death for some patients with weak organs causing failure, and children are especially susceptible. I do not personally live with this disease, and because I cannot truly speak to the hardships that accompany it, I will let professional photographer and long-time sufferer Cate Scaglione speak for me:
Living with Lyme Disease is a private hell, because you're not living normal life at all. You look normal, sound normal, and even act normal (if the symptomatic brain fog has not consumed you altogether). However, it's the mere act of normal living that seems too overwhelming some days. It's when relaxing and lying in your bed hurts physically. Walking to the kitchen for a drink sometimes seems too enormous. A trip to the store is Herculean. Outings or physical activities seem impossible -- not every day, but enough to make you wish you knew what normal life felt like.
Because it's an internal (albeit aggressive) battle, there's no sympathy or awareness among schools, employers, or in social circles. "What you got a tick bite? Yeah you just need antibiotics." I've had 18-month cycles of them, thank you.
A large majority of us, due to lack of Lyme-Literate physicians, don't even know we have the disease. And if we do, it's often so far progressed inside our bodies that the damage is already done.
Four years have passed since my own diagnosis by a Lyme-Literate doctor, and I'm still not better. No treatment has worked for me, and there's no next course of action because the protocol she believes could possibly treat me is not covered by my insurance at $1,500.00 per month.
Without a protocol, many doctors find it easier to cast us all as patients of some lesser beast. Epstein Barr, Depression, Arthritis, Allergies, immune deficiency, and Mononucleosis are just a few of the bogus diagnoses I've been handed.
Some doctors don't know how to properly diagnose, treat, or prevent Lyme disease. Those who do can be threatened to be dropped by their insurance carriers. Pharmaceutical companies have little interest investing in a geo-centric patient demographic. (Lyme disease is most often found in the Northeast and upper west United States.) Insurance companies, well aware of the alarming number of cases on the rise, are all too happy to pretend it's not a real disease with major downstream impacts.
The reality of the situation in our country is that Lyme disease is an unrecognized epidemic. The CDC reports that it is the fifth largest notifiable disease in the U.S. However, since an estimated 95 percent of cases are concentrated within just 14 states in the U.S., I believe this is the reason it is not considered a national health crisis. It does not get the attention it deserves -- and as a result, we as patients have nowhere to go for effective or sustainable treatment.
So... now that we know a little more about Lyme disease, I'll let Greg explain the bizarre circumstances surrounding his recent arrest and detention.
Our son was never able to do things most boys his age could do. He got tired in the grocery store and wanted to ride in the cart. He didn't have the strength to help carry groceries into the house. In school he had trouble holding a pencil, which caused problems with his teachers and drove us to focus on homeschooling. We tried three times to send him to school, and each failed miserably.
In 2010, we got him involved in bowling so he could meet other kids and build friendships. He caught on about halfway through the season, and wound up winning the state Pepsi tournament. Three months later he was in a wheelchair due to severe leg pain. Orthopedic specialists could not find a reason for his decline in health, and no doctors could tell us why.
In the summer of 2011 he became bedbound. We took him to a doctor who was very good. She gave him the fibromyalgia and chronic fatigue diagnoses, but she was also the first doctor to suggest Lyme disease. In January 2012 came our next adventure. He was sick and running a fever. We took him to the emergency room and all bloodwork came back normal. One thing that wasn't normal however, was his heart rate. Lying in bed, his resting heart rate was between 120 and 140. In essence, he was running a marathon without moving. The emergency room physician immediately transferred him to a local children's facility in Denver.
This time the diagnosis was POTS (Postural Orthostatic Tachycardia Syndrome). His cardiologist performed a series of tests, and said everything he was experiencing could be attributed to POTS. Fortunately though, my wife is a tireless researcher, and never stopped looking for the root cause. It was what happened next that finally helped us put all the pieces together.
My health had been fading throughout 2012, and in October I had a major crash. I became disabled by leg and joint pain, brain fog, weakness, uncontrollable rage, and exhaustion. I went to several specialists who found nothing wrong. I was diagnosed with neuropathy in my left foot, chronic fatigue, and fibromyalgia. I was in the exact same condition as our son. That's when we decided there must be a common cause...
My wife's research finally turned up something. Our son had stretch marks on his back and legs called striae, something my wife had noticed was common among chronic fatigue patients, but was also consistent with Lyme disease. We took her son to a Lyme specialist in Boulder, Colorado who did several tests and confirmed that he did indeed have Lyme disease as well as co-infections of Bartonella and Babesia. The doctor said it was the worst case he had ever seen. I went to a different Lyme doctor in Denver, and also received a positive Lyme diagnosis. FINALLY, there was a cause for our illness.
As we both started treatment, I was put on an aggressive plan and saw fast results. Our son on the other hand, progressed much more slowly. His immune system has been greatly impaired by the disease. Three years later through a steady process, he is now able to get out of bed, dress himself, and do computer coding. While homeschooling is still our only option, our son is far ahead of other kids his age. It's fun to watch him learn. He actually taught himself the Python computer language in two days.
So, why was I in jail? We had to take her son to a hospital in July for a stomach issue. He was admitted to the same hospital where he was first diagnosed with POTS. As usual with any trip the hospital, they asked about other conditions and medications. We told the doctor about Lyme and POTS, and all the medications he takes. One of the doctors took exception to the diagnoses and medications, and portrayed my wife as doing Munchausen by Proxy. They actually said they're afraid she is killing our son.
We opened a case with Denver Child Protective Services. I'm not going to go through all of the details here, but CPS has claimed custody of our son while my wife and son were out of the state, and put out warrants for their arrest. Due to the "brain fog" symptom of Lyme disease (which is particularly present during times of stress), I couldn't tell the magistrate where they were, and I was sentenced to 180 days in jail for contempt of court.
The court subpoenaed our health insurance and banking credit card records in an effort to find them. I became a hostage in their attempt to bring my family back to Colorado. All because of Lyme.
There is legislation currently in Congress to protect families and individuals from this kind of thing. The first is HR 4701 which passed in the House of Representatives in September focuses on online education and treatment. The second is to protect families from hospitals and other organizations from taking custody of a child because a doctor does not agree with the treatment plan or diagnoses. This is been settled in court before an it looks like will be the next fight there.
No family should have to endure this type of treatment. Lyme is bad enough to deal with on its own.