I’ve always considered myself a very private person especially with regards to personal issues and my life as I strongly believe — personal issues are precisely that — personal. That said, I’ve decided the time has come where I can no longer remain silent. It is my duty as a doctor, a scientist, a writer, and most importantly as a human being to share my story.

It is my hope that by breaking my silence I might make a difference in someone’s life whether that person has been, or will be affected by the disease that has literally possessed my body for a the past 14 years. This disease is Lyme and I am battling the late stages of this disease — late stage-chronic Lyme disease. I was finally diagnosed with Lyme two years ago, but have been gravely ill from it for the past four, so ill the disease nearly stole my life on more than one occasion.

You may wonder why it took so long for me to become diagnosed. Well, therein lies a large part of the problem for those of us who suffer from this illness. It is a silent killer. Lyme (Borrelia burgdorferis) is an infectious spirochete bacterium spread by ticks. The spirochete is a coil shaped bacterium which differs from all other bacterial infections known to man, except for one, its cousin Syphilis. Spirochetes spread via the bloodstream cross the blood brain barrier where they penetrate the joints, heart, eyes, kidneys, nervous system, bones, other organs, and distant skin sites where their presence gives rise to the variety of symptoms of disseminated diseases. The spirochetes persist in the body for months to years, either in a dormant stage or in a very active stage where they feasts off the body in various locations giving rise to countless symptoms. The disease essentially mimics nearly 300 other known diseases among them multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, Crohn’s disease, HIV, and other autoimmune or neurodegenerative diseases.

This insidious disease so severely altered my life it devoured my very spirit as it slowly ripped away my soul layer by layer until barely a grain remained. And when it cast its last spell, I was but an empty shell and nearly lost the battle and the will to fight. Not only had this disease destroyed me, it had deeply affected the lives of those closest to me, my family, and most definitely my husband. A man who had most gracious cared for me through the most difficult days, months, and years of my plight, and who hopelessly watched as this sinister disease tore away every ounce of the vibrant, intellectual, and humorous woman I once had been.

As this disease consumed me, slowly, most silently, and ever so painfully my friends and all whom I had loved, abandoned me. In a world of isolation, I hid in my room surrounded by my two little black dragons, Lady Morgana my guardian spirit who never left my side, and her brother Mr. Perkins a metro-sexual tux with an attitude and penance for pink. It was there I felt safe. And it was there I entered a deep dark world I created, fantasyland a place where I wrote wildly in peace and utter desolation. Most often I would lay in the dark or at night away from the sun’s damaging rays, which wrecked havoc on my eyes and skin. I lived isolated and bedridden with a computer on my lap, where I delved deep into the fantasy world I had created in my mind and one which would become the foreground of my novel ‘The House of Thoth’. Days and then months passed. My condition deteriorated. Yet, I was determined to complete the series before I died. My writing was what bound my last strings of hope together. This disease had not only taken over my body but it began to devour my sight, my mind, and worse my soul. It had stolen everything from me, or so I believed.

While my husband most certainly was the person who saved my shell from being crushed, it was someone entirely unexpected who saved my inner being and helped me to regain my will to fight. It was with the help of someone so unique and special who entered my life at the most critical and crucial time for me.

From the moment this woman entered my world I could see she was different. I felt it deep within me. Her aura shone so brightly even a skeptic would see who and what she was. Some would call her an angel, a spirit from the gods, but I called her the one who saved my soul. The lessons of that day were some of the most profound I’d ever experienced and some of the most important of my life. We are all born with the same mechanisms inside of us, however it is how we choose to develop these devices that matters. Every human being on this planet has the power to control his or her own destiny. No one can control it for them. This bright spirited woman helped me find myself again through her guidance, power, and strength, and I am eternally grateful.

That day, and the days, which followed changed me. The truth behind my silence among other things became clear. I had been embarrassed. I allowed my career to define me. I was living the dream. I had it all, the life, career, money, great friends, everything or so I believed. Until the day, my entire world crashed. The day when I realized I could not longer perform my job in the capacity I had, with integrity, honesty, and pride. I was mortified and it terrified me. The strong tenacious woman I once was, she was gone. I could not allow myself to appear weak, fragile, or human.

During the time when I had regained my sense of self, I came across a blog post written by a woman who had Lyme disease. I read the article and at the end, I was compelled to read the comments. I was astounded by the number of responses from people who had Lyme disease or were in some fashion affected by the disease. Hundreds. I read each heart wrenching account, which ripped at me such I realized I had to do something.

No matter how much this disease shredded away from me, I no longer could sit idle and watch, as so many people’s suffering far surpassed anything I had endured. I had discovered my voice. I had cracked the code. I had been blessed with the ability to write and to understand the science behind the Lyme bacteria, which I continue to battle in its late stages.

I understood the disease better than the doctors I sought treatment from. While I knew in my heart I had Lyme disease. I listened. Repeatedly, when informed I was wrong. I’d been belittled and patronized by the same condescending doctors who allowed their ego and prestige drive them and not the very oath for which they swore to uphold. Piece-by-piece these doctors destroyed me exactly as Lyme and the many co-infectors had damaged my entire being. These ‘so called’ professionals shattered my intellect, which in most instances matched or even far surpassed theirs. It mattered little. They tore me apart with each ridiculous diagnosis they could throw at me.

Yet through my research I discovered the ugly truth. None of which is a secret within the Lyme community. But for those who are not, it is a sad and horrific reminder. Me, along with every person in this country, and those in other parts of the world affected by this disease all know — we have been lied to. It is so profound in and of itself, yet it is something that must be addressed and the entire world needs to know the truth. Lyme disease is a pandemic. And issues run rampant in how the disease can and is treated. Trust me when I say it’s disgraceful.

Last year the Centers for Disease Control and Prevention (CDC) announced Lyme disease is much more common than previously thought, with over 300,000 new cases diagnosed each year in the northern and mid-western United States alone.[1] This number is roughly 10 times higher than the officially reported number of cases, and strongly suggests the disease is vastly under-reported. This figure also indicates Lyme disease is almost twice as common as breast cancer and six times more common than HIV/AIDS[2]. As of this article, the CDC has yet to change their website to update the reported number of Lyme cases in the US. Thankfully, the statistics have been voiced for the world to hear, despite the CDC, and the Infectious Disease Society of America (IDSA), among other agencies efforts to hide them.

Accurate information about Lyme disease has been kept out of almost every website in the US unless one knows where to search. While this disease can be treated, if detected early, chances of a cure are slim. The best one can hope for is remission. I will expand on the efficacy of treatment and options, the disease itself, its many co-infectors, the importance of nutrition and the healing process, and resources and reference materials in future posts. I’m in the process of completing not only my fantasy series, ‘The House of Thoth’, but my current work in process which details my personal battle with Lyme disease in ‘My Life With Lyme’, which I hope to have published late next year. As my battle from this disease is far from over. I struggle each day from the confines of my bed, in total darkness. So work on both projects have slowed considerably. That said, at least now I have regained my drive to persevere.

I know from experience many of you will turn away as you believe Lyme disease does not or will not affect you. Please don’t. The truth might some day be more relevant to you than you might think. Lyme disease is present in every state. The more you know the more you can do to protect yourself and your loved ones from this disease. The truth awaits you.

[1] CNN reports 2014

http://edition.cnn.com/video/data/2.0/video/bestoftv/2014/05/23/sgmd-lyme-disease.cnn.html

[2] Dr. Joseph G. Jemsek, MD, FACP, Jemsek Specialty Clinic, JemsekSpecialty.com