Letter to the Editor: The Gloves are Off
Dear Public Health Alert,
I would like to thank you for offering an updated and comprehensive newspaper for the Lyme disease community. I believe that it is important to inform the public on the latest medical information, holistic approaches, patient stories filled with their heart-wrenching journeys, and inspirational articles to keep our hearts and spirits moving in a positive direction. Public Health Alert gives us hope and encouragement to fight this devastating illness. With the continuing war going on with the Lyme disease treatment guidelines, your paper offers your readers "to the point" updates on the political front.
If I may, I would like to share a part of my life's journey with Lyme disease. It has been a loss of 20 years of my life, the abuse from the medical establishment has been beyond that of my wildest dreams.
My journey with Lyme disease started in the late 80's. I knew I had been bit by many ticks in the outdoors, but Lyme was not even heard about back then. My diagnosis came from my best friend, around eight years before I was officially diagnosed by the medical community. At that time, I didn't have any idea what Lyme disease was. As each month went by, I was going to specialist after specialist. At this point, all of my life's dreams had faded, and were completely over shadowed with sickness and despair. I was no longer able to teach physical education and high school mathematics, I was unable to backpack, ride my horse, or do anything except schedule doctor's appointments. For 6 years, I was either in bed, or waiting for hours in the office of a physician that would inevitably "ping-pong" me to the next specialist.
Thinking that I would put this Lyme disease issue to rest, in 1993, I scheduled an appointment with Dr. Allen Steere, at Tufts University School of Medicine. I discussed my profound fatigue, stiffness in my joints, severe headaches, intestinal and urinary distress, irritability, concentration problems, neck pain and heart issues. Looking back, this physician never discussed my lifestyle or brought up Lyme disease. Sadly, I left with Tufts University with a diagnosis of chronic fatigue.
Five years had passed since my visit to Dr. Steere, and I was now near death when my husband and I took a trip to the Mayo Clinic in Rochester, MN. None of the specialists had a clue what was wrong with me. The possibility of Lyme disease was dismissed because previous testing done by Dr. Steere revealed that my Lyme serology was negative, including my Western Blot by CDC criteria. So, no further Lyme testing was performed at the Mayo clinic because I had seen Dr. Steere, and who better to confirm or dismiss if I have Lyme disease?
My suffering continued and my symptom list was huge. When I was awake, all I felt was pain. My pain was constant, and unbearable in my knees, ankles, shoulders and hips. I was dizzy and shaky every day of my life. My hands were weak. I was unable to focus my eyes, eventually going blind in my right eye. My extremities were numb and freezing cold. I experienced sudden and dramatic weight loss. My skin around my eyes and mouth had turned yellow. The nerve pain was all over my body from tingling gums, tip of my nose and in my arms, legs, and tongue. It didn't matter that I was unable to swallow without great difficulty, had heart issues, light and sound sensitivity, sleep disturbances, and shortness of breath! It didn't matter that I had a spastic bladder and severe intestinal distress, throat pain, prolonged fevers, loss of vision or that my husband had to help me walk to keep me from falling. Absolutely nothing seemed to matter. What was going on?
Finally, after 7 hours a day of testing at the Mayo clinic for over a week, I was going to have an answer to the questions that I had feared for so long. Was I going to die, and how long did I have to live?
My physician, who now sat in front of my husband and me, was about to tell me what had stolen over 10 years of my life. He sat before us looking over my medical records for the first time. I couldn't believe it. I couldn't wait any more so I said," AIDS?" No reply..."MS?" No reply "Cancer?" Finally he spoke, not to me, but to my husband. He said "We have diagnosed your wife with Fibromyalgia." Are you kidding me, I thought, and he went on to say, "the best thing that you can do for her is to ignore her. She can take eight aspirin a day for her pain." To let you know what the Mayo Clinic thinks of Fibromyalgia, I requested my records to find their concluding statement was, and never disclosed at our visit, quote: "Well-built, well-nourished female in no acute distress. She is able to squat and get up without difficulty. Walks well on her toes and heels so, we cannot find any evidence of an organic disease to explain her symptoms. I suspect that she has Fibromyalgia with a major anxiety overlay" and to further the abuse, "marked somatizaton."
I cannot explain in words the outrage, the ignorance, the gall, and the verbal abuse I have suffered at the hands of all of these Lyme-ignorant physicians and facilities. Like many other patients who are suffering, I had to see over 50 doctors before I finally found one that truly specialized in Lyme disease. I've had enough! The gloves are off!
I would like to take this opportunity on behalf of myself, and the hundreds of thousands that are afflicted with this disease, if I may, to address Dr. Steere and the Infectious Disease Society of America (IDSA). I never would have imagined that a disease that I suffered with for so many years, that has claimed my life and defined who I am, would now be causing such suffering in a large percentage of the population. There are now hundreds of thousands of men, women and children that should be living beautiful and fulfilling lives, that are at the mercy of your outdated and barbaric guidelines set forth by the IDSA, and followed and supported by the CDC.
Dr. Steere, I often wondered if you would remember me? Do you remember the faces that have passed through your office? Do you wonder how the lives of your patients have been? Have you given thought to those patients who have lost their lives, and their families? I had, at one time, found it in my heart to forgive you, but that forgiveness is now gone. You, nor anyone else, can ever compensate me, or the hundreds of thousands of other individuals, for a life of unimaginable suffering. If it were not for the constant love and support from my husband, and the financial means to cover life-saving treatment through educated and devoted ILADS physicians, I would have taken my life in my mid 40's. How dare you go to the July 30, 2009 hearing and present such hideously ridiculous outdated data. Our lives have
been in your hands. As we are dying, what are you doing?
Dr. Sigel, I doubt that you remember me, but I remember you. I wish that you had informed me that you were getting paid big bucks from the insurance companies to deny life-saving treatment to thousands for Lyme disease treatment. And yes, your patients are sick, not hypochondriacs.
Lyme disease takes lives, and changes lives, possibly forever. I never thought that at such a young age, I would be challenged on so many fronts. But through it all, it has given me a greater compassion towards those that are less fortunate, the ability to see the beauty in small things, friends that I wouldn't otherwise have had, a passion to fight for what is right, and overwhelming desire to fight that which is wrong. For 20 years, I have promised myself that if able, I would make a difference to the injustices that men, women, and children are now facing due to Infectious Disease Society of America's flawed guidelines.
For many years, I have wanted to thank the physicians from the International Lyme and Associated Diseases Society (ILADS) for saving my life. Through the care and guidance of my skilled Lyme Literate Medical Doctor (LLMD) I was finally diagnosed with Lyme disease, Babesiosis, Bartonella, Ehrlichiosis, Tularemia and Mycoplasma. I have made incredible progress and my health is vastly improved. I want to thank my amazing husband who has stayed by my side through a 20 year battle with Lyme disease, whose faith and spirit has been an inspiration to my healing, and the words, "To have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness or in health, to love and to cherish 'till death do us part. And hereto I pledge you my faithfulness" would be put to the ultimate test.
The time has come for me to give back, and stand up for Lyme patients worldwide. I am co-founder of the Adirondack Lyme Disease Foundation (ALDF) which is dedicated to raising awareness and educating the public on the truth and injustices of Lyme disease. We are working on saving lives by presenting current and correct educational materials to our community. We encourage you to browse the pages of our website
www.adirondacklymediseasefoundation.com
and welcome any questions or comments you might have.
The lives lost, the battles fought, shall never be forgotten. From here, we draw our strength. We will continue our battle for justice on behalf of the hundreds of thousands who will have to fight this insidious disease, and for those who are now fighting for diagnosis, proper treatment, access to educated physicians, their livelihoods, and lives.
Linda Mc Allister
