I believe we all must know the darkness before we can appreciate the light, which is why the words by Madeline L’Engle resonates with me so much. Her words certainly are proper for those of us who have Lyme disease, as we no doubt have all most certainly seen the darkness at one time or another during our journeys no matter how long or short we have had the disease. This darkness is so insidious it destroys everything in its wake, rather like being thrust into a pit of vipers where we spend most of our days withering in pain, from a chronic disease that isn’t even recognized by our own government, the CDC, or the Infectious Disease Society of America (IDSA) as a real illness. Truth.
Yet it is a disease, which destroys the lives of millions of Americans and people worldwide. Forced to pay out-of-pocket for expenses, we live paycheck to paycheck, when at one stage of our lives we were financially secure. Lyme disease will strip this luxury from you unless you are a Musician or Hollywood celebrity. We also loose many a relationship because people simply can’t grasp our illness; how could we possible be so ill from an otherwise invisible illness? We can and are. Millions of us.
We have lost loved ones to the disease, and grieved for them but have in turn have grieved for ourselves as we find our way through the darkness of the abyss that is Lyme disease. We creep out for minutes only to be thrust back in, our bodies no longer recognizable to us, we have morphed to virtual shells of our former selves, our former lives, and our former beings. To those of us, like myself and others with this illness, our lives have been shattered, and sadly all to often beyond repair. We must learn to recreate ourselves as we seek the light which always seems to be out of our reach.
Lyme disease, took me, along with so many others like myself, too long to be diagnosed, only to be saddled with a misdiagnosis. If that wasn’t bad enough or wrong enough — it certainly wasn’t right — especially after seeing 30+ doctors over the course of three years, in search of someone to help me, to treat me for Lyme disease I had all of the symptoms, the bull’s eye rashes, the fevers, chills, the worse case of the flu ever and still not one doctor would treat me. None. Even though I knew what was wrong. They flat out told me it was impossible I lived in Oregon and Oregon doesn’t have Lyme disease. What! True story.
Guess what a) I was infected in New York where I worked for several years and b) I didn’t acquire Lyme in Oregon even though it was entirely possible for me to do so. Oregon has ticks and Oregon has Lyme disease. After three years of wasted time, I was finally given a diagnosis — and no, not a diagnosis of Lyme disease, rather the opposite in fact — Progressive Bulbar Palsy a rare form of ALS. I had been given a death sentence.
I remember the date, the time, and sitting on the floor in my Doctors office waiting for my husband to arrive to my appointment as she wasn’t about to be told such news without his presence. When at last he arrived, I had in had a glass of Evanstad Reserve Pinot Noir from a local winery, Domain Serene and at the time one of my favorite Pinots, in hand. I remember a feeling of doom in the pit of my stomach as the wine burned like acid as it hit my throat and bubbled in my stomach like a pot of poison brewing in a witches kitchen. My husband joined me and my doctor on the floor. She handed me some overtly large stuffed dog with droopy ears to hold on as if I were a child. I certainly played the part crying like one before I even heard the news of my fate.
My fate, the one for which I had fully prepared myself for Lyme disease would be devastating. Rather like hearing I had breast cancer a few years earlier. It couldn’t possibly as bad as that, or could it? I think the wine was a give away something bad was to erupt from my doctors lips. My keen intuition spot on as usual.
Sometimes I wish I had not been saddled with that burden of being so gifted intuitively or emphatically as it drove me crazy, figuratively speaking of course. And then she spoke, While her first words were muffled sounds of blah, blah, blah, then I remember her handing me a piece of her stationary and saying I am so sorry as she handed me the paper with a 1) progressive bulbar palsy or 2) ALS. Written as her official diagnosis. I wish I had held on to that paper now. It disappeared in the days and weeks to come. She had sealed my fate and signed the certificate in her blood. I asked her three times. “Are you sure? Because I am fairly certain you are wrong and I have chronic Lyme disease.”
But she repeated, “I am so sorry, I would bet my medical license on it and if I am wrong, I would willingly eat crow.”
Hum. Who is eating crowing, now? No one yet, but she will one day, when she least expects it. And this coming from someone who is not at all vindictive nor am I out to ruin another’s life simply because they have ruined mine. That is not me. It never has been. I might think it with my inside voice, but something so devastating certainly did call for my outside voice. But for once I was silent. All I could do was weep and grieve. And later put my affairs in order while I had the chance. I also remember her vaguely asking me if I had a bucket list? A bucket list, was she serious? Why on earth would I have a bucket list at my age? Those are for old people.
The frustration was not lost on me. It had taken so many professionals, medical doctors, psychiatrists, ophthalmologists, specialists and repeat, who never could agree on a diagnosis, except to tell me that by no uncertain terms I did not have Lyme disease, although one neurologist was certain I had rare migraines. He too would bet his license. Interesting but NO. I don’t even have headaches. How can I have migraines. He was worthless.
All of the Allopathic Doctors were worthless — not to mention they wasted precious time — time I could have received treatment. Instead, I was given three to six months to live by my primary care doctor, who I had trusted with my health for years. She gave me a blow I have yet to forget. I have forgiven her long ago for her malfeasance. A devastating diagnosis to say the least — when all I needed was antibiotics — I was denied. This life was not fair.
Had I not used my voice to fight back and say NO! I would not be here today, this was nearly six and a half years ago, but I have had Lyme for 16 years. I would like to think I was in some form of remission, but in fact, my body was slowly dying as Lyme had infected my heart and bones to a degree that over the course of ten years I had undergone multiple cardioversions, three cardiac ablations, plus another one a year an a half ago which makes four. And now I wait for the right time as I will need a fifth. That plus my bones are so brittle the simplest of accidents have led to severe bone breakages, surgeries, and now prolotherapy to help heal areas of my body that because of Lyme disease were not healing properly over several regions of my skeleton.
As I write this I am still recovering from a broken back in three segments of my spine from two tumbles down our stairs, in my wheelchair, in the middle of the night. Don’t ask. I will explain in greater details in my forthcoming book, “Gladiator In Pajamas: My Life With Lyme.’
Meanwhile, with regard to my death sentence. I never gave up. I agreed to see one last Neurologist who specializes in ALS. She spent a considerable amount of time with me one afternoon and yes I even endured the dreaded EMG test, which tests the electrical activity of selected muscles of the body and for me she tested both legs and my arms.
According to the horror stories I had read about this test, I was petrified because most people indicated it was an extremely painful test. It was a cake walk compared to the many other procedures I have had to endure during the three years it took for that ALS diagnosis. Three years. All in efforts for Allopathic Doctors to disagree on everything, fart around, and not one single one would listen to me when I told them, begged them, all I needed was antibiotics. This all on deaf ears. Meanwhile, I rapidly began to deteriorate. I weighed 94 pounds by this time I saw the neurologist, on a 5 foot 8 inch body that was once all muscle. The muscle of an élite athlete. Gone.
Thankfully, the neurologist was brilliant and a woman. I was done with male doctors and their egos the size of the Grand Canyon. Imagine my relief, that this female ALS specialist, agreed with me, without actually saying anything. Yet little did my husband or myself realize at the time that diagnosing someone with Lyme disease, let alone chronic Lyme disease is illegal in the great state of Oregon. How could that possible be? Even this brilliant neurologist had been written up and nearly lost her medical license for treating misdiagnosed ‘ALS’ patients with antibiotics. I kid you not.
Since then, both my husband and I have read the horror stories of the many MDs who either lost or had their licenses suspended for doing their jobs. In my mind, it goes against the very Hippocratic oaths they swore to uphold, ‘I shall do no harm’. Such bullshit. For something as minute as prescribing antibiotics. In lieu of a repeat scenario for her, she sent me to see a Lyme specialist or Lyme Literate Naturopathic Doctor. A good move as I would have died, had she not — another Lyme patient diagnosed with ALS — A statistic with a wrong diagnosis to boot.
The only doctors who can diagnose and treat chronic Lyme disease, and not only in Oregon, but in roughly 43 or 44 states across the country now allow NDs to do so. They do not have to answer to the same medical board as MDs do. Most of these states who allow MDs to treat are on the East coast where Lyme disease is clearly an epidemic; congress has allowed them more latitude now to where doctors can treat and medical insurance must pick up the tab. This practice makes for a wonderful contentious story for another day.
While having Lyme disease is bad enough, however, it is made worse by the fact doctors don’t take the illness seriously as most Allopathic doctors don’t believe the chronic form exists because the CDC and IDSA tell them as much. And don’t get me started with those two agencies. Corrupt to the very core, which is the other sad part of having this dreadful disease, medical insurance is not required to pay for treatment for a disease the CDC says doesn’t exist. They call it Post Treatment Lyme Disease Syndrome (PTLDS) not chronic Lyme and will not pay for many treatments those with chronic Lyme disease require.
Most insurance companies will pay a limited amount for early Lyme, up to a 30-day supply of antibiotics which is nowhere near long enough and of course the insurance industry forgets everyone who contracts Lyme is different and those differences must be taken into account when it comes to the treatment of Lyme. We are not robots who can all be lumped into one box.
For example, genetic testing his huge and informs a doctor not only which drugs will work but which drugs a patient likely will not respond to and so much more. Secondly, nearly everyone with Lyme with the exception of a few very lucky people will find it takes a long time to receive a diagnosis which is time they could already be treated proactively but the law says, no.
So, someone who is bitten must wait until they show signs of a bull’s-eye rash, fever, chills, headache, and over all aches and pains (think flu to the nth degree). And upwards of 50%-60% of people never recall even being bitten. Then according to the CDC must also test positive with the ELISA and Western Blot tests which are both outdated and only 40% accurate. What other disease does this remind you of? For me it is HIV/AIDS of the 1980s. But even their tests were at least accurate.
Many people fall through the cracks because they fail to show signs of any of these symptoms or only a few. This is why if you find a tick on you to always make sure that you put it in alcohol or carefully wrap it in a wet paper towel put into a plastic bag and either give it to your LLND or LLMD for testing or a local University entomologist who can identify the species and check to see if the tick carries Lyme or any co-infections.
This is yet another factor that weighs into ones treatment, what co-infections a person has picked up from that tick bite. Most doctors, especially MDs don’t even know what the co-infections are let alone where to have them tested. And so often a person can become more sick from the co-infections than from Lyme disease initially. A timely diagnosis is paramount to ones recovery or submission into remission, as currently there is no cure for Lyme disease. And while the earlier one can be treated the better but unfortunately for most people, this is a moot point, because they have already gone chronic by the time they begin treatment. One must receive a timely diagnoses and if they don’t, it makes treating the disease much more difficult, if not impossible, and people die.
Others, like myself have a difficult time locating a doctor to test them for Lyme; I will go into this in a later blog post as it is so complex. But there are now labs that you can get tested at with an order from your doctor for a blood draw and you can do this electronically. I will explain later. The only problem is the CDC will not recognize the Laboratories regardless it is a licensed and certified lab and because of this, insurance won’t pay for the cost of the tests which are spendy or your care to be treated. And one must get treated because there is no cure and the symptoms are debilitating and complex. But I believe many doctors are getting closer and are helping many people reach at least remission.
As for me, well, I had one of the worst cases of Lyme disease this LLND had ever seen. She held out little assurances to us but would do what she could to at least avert the Lyme from doing more damage, but she guaranteed nothing least of all to suppress the disease into remission. That said, she has since retired and I now see another LLND who is perhaps the most personable and brilliant doctor I have ever met. Imagine a doctor with a jovial bedside manner, scientific acumen, and the willingness to think outside the box. Unheard of in the Allopathic community, or at least extremely rare.
My cardiologist is perhaps the only other doctor I can say that about. My new Lyme doctor’s mission is to do what is feasibly possible to stave of Lyme and the three co-infections into remission. So far I am closer to the light at the end of the tunnel, but still it is far-reaching.
Ironically, I also remain a statistic. But with my tenacity and voice inside me who knew I had Lyme disease and at least one or two co-infections. My Lyme ND confirmed I have three co-infections: Babesia, Bartonella, and Mycoplasma, plus a plethora of secondary infections and three autoimmune diseases, and two genetic mutations, etc. I also have Late stage chronic Lyme or Multi-Systemic Infectious Disease Syndrome (MSIDS), or as the CDC refers to it as PTLDS. Regardless of what anyone calls this disease it is still the same disease, it is Lyme disease.
The messy business of floundering through our medical system and being treated worse than a crack addict, is typical for those of us with Lyme. Even while I knew I had developed chronic Lyme disease. Not one MD would listen or help me. At least now I know why, they were afraid to touch for fear of loosing their license. No excuse.
Not only must we come to terms with an insidious disease, we must learn how to advocate for our own care. We also must come to terms with the fact our lives will never be the same. This disease has changed us in ways we never would have imagined good or bad.
By enduring all that we have, we have evolved into better versions of ourselves a result of the pain, loss, heartache, grief, and acceptance of a disease none of us ever chose to have. In addition, to all of our daily pain and challenges we face just to stay alive, we forge forward. We are Warriors and Gladiators. We have souls of Warriors surrounded by a wall of glass lamps, and we are the lights that flicker inside. I am a Gladiator in Pajamas surrounded by darkness and at the end of the tunnel I see the twinkle of a light.
Some would argue it is not living, it is not a life being bedridden for days, months, even years. I disagree. It takes strength, hope, courage, and perseverance to fight for another day. All because we see a light flickering inside a long dark tunnel of glass, each day the light becomes closer to our grasp. So you see, we must endure the darkness before we shall ever appreciate the light.