and I'm here to help raise awareness of a potentially serious disease if not diagnosed and treated early – Lyme disease.
In 1984 two of my children contracted Lyme disease. Although the first pediatrician dismissed the strange rash as a viral infection the second one did not. She excitedly recognized the symptoms and clinically diagnosed Lyme disease. She had just attended a lecture on Lyme disease. Their symptoms were recognized and they were treated early and aggressively. Little did I know then how devastating this could have been.
Unfortunately I am a victim of Lyme disease and other tick-borne diseases. I am also a victim of a medical establishment that is reluctant to test or treat these diseases. I believe I contracted Lyme disease while hiking in the Delaware Water Gap, although that will never be known. Once an active person who could hike strenuous hikes I began to notice my health deteriorating. Eventually on my worst days it became difficult just to walk to the mailbox.
In the beginning of my illness, my symptoms were drenching night sweats, flu-like symptoms, excruciating headaches with neck stiffness, whole body aches and pains especially my knees. As the disease progressed it became a myriad of symptoms affecting one part of my body one day and a different part of my body the next. At one point my daughter frustratingly exclaimed "Your symptoms are all over the place." I have since learned Lyme disease is a multi-system, multi-syrnptom disease. It affected my hearing, my vision, headaches so excruciating I thought it had to be a brain tumor. A headache that severe couldn't possibly be anything else. Severe stomach pain would bring me to the floor in sheer agony. My heart would race uncontrollably while lying in bed. I became "lost" in a store that I was very familiar with. At times my legs felt like they were going to give out on me -sending me to a chair. I would describe it "like a wobbly baby calf" I would wake up mornings where the pain in the muscle of my arms was so severe I couldn't lift them, we would try resting them in a sling and people would ask "Did you sleep on it wrong?" I became so neurologically impaired there began to be days where I couldn't drive. I would have bouts where I couldn't catch my breath. Air hunger would bring me collapsing to the floor, especially after a shower. The fatigue was so extreme -I felt as though I could just collapse.
With this myriad of symptoms I found myself running from doctor to doctor. For almost 2 years it seemed as if I had a doctor appointment each week. I was determined to find out what it was that was causing my illness. An illness so severe I went to the emergency room on 4 different occasions -only to be told that I was fine and I was sent on my way. I saw over 20 doctors "specialists" -neurologists, gastroenterologists, urologists, cardiologists, rheumatologists, ophthalmologists, endocrinologists, etc. I endured test after test – Numerous MRI's -EKG's, EEG's, endoscopy's, colonoscopies, a spinal tap, etc. I was poked, prodded, analyzed~ I felt as if I was everything but dissected. Test after test revealed nothing -absolutely nothing. At this point I requested a PET scan -"There was something wrong with me and no one could figure it out." So I asked my neurologist at the time to order a PET scan. He was reluctant so I was adamant. It was at this point where I was told that I was going to need psychological help. I told him that if he were as sick as I was he would not be sitting behind his desk at work. He ordered the PET scan and that too revealed nothing. At a loss and feeling so desperate and sicker by the day I made appointments to top hospitals, over 5 top hospitals. I went to Columbia Presbyterian in NYC, Sloan Kettering in NYC, University of PA in Philadelphia, Hackensack Memorial in NJ, Robert Wood Johnson in NJ. All to no avail, No diagnosis!
After my visit to Columbia Presbyterian in NYC I continued to have excruciating stomach pain. I called numerous times and finally got a phone call back only to be asked "Did you try Tylenol?" At my visit to U-Penn in Philadelphia I was prescribed Prednisone (a steroid) for my excruciating headaches and brain fog. I emailed the doctor and told him I was worse and further studies needed to be done. He emailed back and told me "no further studies needed to be done." Steroids are the worse things ever for Lyme disease – they suppress the immune system. I followed my instincts and quit taking the prescription.
The prescription of choice seemed to be antidepressants. As you saw in the movie, I too have a giant bag of useless prescriptions. Many prescriptions I never filled clearly knowing they would do NOTHING! It was at this point where I knew I had to make an appointment at a "top diagnostic hospital." I went to the Mayo Clinic in Jacksonville, Fla. twice-each time we spent two weeks there. I was put on the Mayo Diet (as they call it) numerous times and run through the Mayo Gauntlet of testing. That too revealed nothing. I boarded a plane home after the 4th week spent there believing I was going home to die. Where could I possibly go from here?
I was finally diagnosed by my sister's neighbor – a retired Johns Hopkins nurse. My sister told her my symptoms. She exclaimed "That's Lyme Disease." My sister went home and started researching the internet. I told her I was already tested for Lyme disease and the tests were negative – further research revealed that the tests are terrible and I had every symptom of Lyme disease.
The Mayo Clinic's website states that Lyme disease is "over diagnosed". I beg to differ.
As difficult as it was to get a diagnosis, I was soon finding out that it was going to be just as difficult to find a Lyme-literate Doctor. My first round of treatment was 56 days of IV antibiotics along with orals. I was going to The Tick Borne Disease Group in Phillipsburg, NJ. Shortly after the pic-line was pulled out and the treatment stopped, my symptoms that had somewhat subsided were back with a vengeance. Calls to The Tick Borne Disease Group were fruitless -they had been shut down. After this I saw 3 doctors who clearly were not going to get me well.
I was now more knowledgeable as to the politics and corruption surrounding this disease and I began my own homework on the internet. Through phone calls I was directed to Dr. Gregory Bach by a nurse. Dr. Bach had treated her whole family and had gotten all of them well again. And HE is the reason that I am well enough to be able to be here today. Lyme disease is one hell of a battle -a battle to get a diagnosis, a battle to fight the disease, a battle to get your insurance company to pay for your treatment, and a battle to get the medical establishment to recognize and treat this disease -as the very serious disease that it is. Unfortunately my story is not unique. Stories just like mine are repeated over and over on the internet and something seriously needs to be done.
Thank you for coming and showing your support. Together we will make a difference.