Dear friends and partners, it has been a few weeks since I have talked to most of you. I am writing to give you an update on why you have not heard from me, and to tell you that I just got out of the hospital and I’m in much better shape than when I went in. You see the light at the end of the tunnel is not always a train.
Nevertheless, it was one of the most gruesome experiences that I have ever known. After 20 horrific days of fighting an unknown enemy that had severely impacted my body, we finally discovered that it was the dreaded Lyme disease that seemed to have given me a meningitis type of effect. Who could have figured as my first thought went back to the previous operations on my neck four years ago? After weeks of deliberating, emergency room and doctor visits, I was finally admitted to the hospital. It was about this time that I developed Bells Palsy, and they found that my spine was swelling. The diagnosis was that it had all been due to Lyme disease and now we have the pain and swelling under control. The next steps are: I will have to take intravenous antibiotics for the next 28 days to try and kill the disease.
This is why I need to take it slow and listen to the doctor. With that said, my hope is to follow up with just a few critical matters at work and leave the rest until I’m better. Of course all this is up in the air until I know if I have beaten the bacteria. Hopefully, I’ll be on the mend and I look forward to seeing you all again soon!
I don’t know when I was first infected; I never had a rash, fever, malaise, or any symptoms after being bitten by a tick. I now have Chronic Lyme Disease (CLD) and here’s my story.
All my life my health has been excellent and I’ve considered myself blessed with good fortune as it has allowed me to remain active and participate in many athletic events including: running marathons. Nothing could have prepared me for the disabling, debilitating sickness of CLD.
While this story may be long and detailed, it is important to see how chronic Lyme disease can engulf an otherwise healthy life to one of humility and desperation. This story begins with the 2008 Christmas Holiday when I developed a very different ache and burn in my left hamstring. I was treadmill running, and assumed this ailment was another athletic overuse injury and that my body was just getting old. This strange feeling seemed to gradually worsen over time, even though I backed off from running.
Over the spring, my hamstring became more painful. Driving became a problem and it felt as though my hamstring was burning from the inside out. The stiffness was more pronounced in both legs now, from the hips down to my knees. My love of yard work was no longer fun. I caught poison ivy in late May and needed steroids to help get rid the allergic reaction. After I finished the three week prescription, something very frightening happened; one Saturday morning in June I could not get out of bed. My legs, back and arms were so painfully stiff and there was joint pain in my hip and knee. My arms were tingling and felt partially numb and the burning in both hamstrings was so intense like something I’ve never experienced before. Once upright, the muscles in my legs felt as though they were tearing apart. The worst problem I had was with my arms. They burned, had numbness, tingling, electrical shock sensations and a feeling of heaviness. At times I wished I could cut my arms off. There is no exaggeration when I say this would go on for days without relief. The pain was continuous from the moment I woke until falling asleep. This continued for the next few days and I began to suspecting Lyme disease, so I went to my doctor to explain the symptoms. He ordered a Lyme test but did not prescribe anything for me. The results of my Lyme test were negative, but my (CRT) was off the charts indicating an inflammation was going on, which was causing my muscle and joint pain. The doctor diagnosed me with Polymyalgia Rhuematica (PMR), prescribed 20 mg of Prednisone a day and I was told I should see a positive response and improvement in three days. The only change was some relief of pain but the symptoms continued. After researching my symptoms, I wasn’t so sure that PMR was my condition and thought it could be more of a MS or Lyme disease diagnosis.
Over time, I realized it was difficult for me to concentrate on simple tasks and found myself getting easily confused. There were several instances where I drove in the wrong direction while driving on roads I was familiar with; causing a couple of anxiety attacks. Also, I had a few very intense fits of rage and felt completely out of control. I was unexplainably exhausted, which was not like me. My other symptoms seemed to migrate. I never knew which joint or muscle would be troublesome next. I began to worry I might never learn what was wrong and it would plague me for the rest of my life.
In July, I was tested again for Lyme and the results were negative. My generalist referred me to a specialist, a Rheumatologist at Hartford Hospital. Many tests were run and the results concluded there was no rheumatoid or osteoarthritis involved, nor did I have Fibromyalgia. When I brought up Lyme, the doctor didn’t want to talk about it. Sobbing, I wanted answers to why I had pain, muscle weakness, and exhaustion? He agreed to order another Lyme test which again was normal. The Rheumatologist stuck by my generalists’ original PMR diagnosis, but further refined the diagnosis as an ‘a-typical’ form of PMR, and he doubled the dosage of steroids to 40 mg / day. This was so wrong, so as I left the office I requested copies of all my tests and files and I never filled the prescription.
The next step was to I contact a neurologist to determine if I had a neurological condition such as MS or MD. My mother died at age fifty-four from MD and wondered if I might be developing some form of MD; after all, I had three false negative Lyme tests.
The Neurologist gave me a thorough exam and ruled out all myopathic and neuromuscular conditions such as MS, MD, Fibromyalgia, Chronic Fatigue, and PMR. After eliminating these diseases, she ordered another Lyme test and it was negative. My Neurologist felt there was a strong possibility of Lyme but was reluctant start antibiotics without a positive test and prescribed me Vicotin, which didn’t help anymore than the OTC pain relievers. Vicotin only took the edge off for a couple hours and then right back to pain, so after three days I discontinued the drug.
Over the next couple of weeks I was making calls daily to seek out Lyme Literate Medical Doctors. I contacted some of the most well known LLMD’s in New England, speaking with doctors from Massachusetts, New York, Long Island, and here in Connecticut. No Lyme Specialist was able to see me for at least three months and I needed immediate attention. Monitoring my own prognosis, I predicted within three months I’d be partially paralyzed and bedridden, unable to work or care for myself. I was not sleeping well and losing weight. I was more depressed than ever, stopped smiling and laughing altogether as became disengaged with life. I wasn’t sure I would live to see my 15 year old daughter graduate from High School. It was difficult for me to shower and dress myself, never mind driving and walking. I began to feel helpless, hopeless and so alone, and depression overcame me. I began conjuring ways to end my life. My faith in God would be what kept me alive.
During my worst flare in early October, my brother in law, also afflicted with chronic Lyme disease, came down from New Hampshire to check on my condition. He felt strongly his Lyme literate MD could clinically diagnose me based on my symptoms and he insisted I send my blood work to IGenX. Desperate; I had my blood tested for the 5th time and waited nearly two agonizing weeks for the results. The diagnostics was positive for Lyme disease, so began my treatment with the same LLMD that was treating my brother in law in New Hampshire.
During my first visit, I learned that all the steroids I had taken, weakened my immune system and allowed the Lyme bacteria to grow and invade my body at a faster rate. This would negatively impact the length of time for my treatment plan. I was prescribed multiple antibiotics which ultimately saved my life. Also, I was prescribed a sedative to help with the pain and to help me sleep.
I am now almost four months into treatment. According to my LLMD, the fourth month is a key marker, and he expects to see a change in my condition and I’m heading in that direction. I will be starting a new drug therapy this week designed to go after the cysts, after which I should see more improvement. In retrospect, I can say some of my symptoms had begun in 2007 as minor, short lived interferences, but came into full bloom after the first round of steroids for the poison ivy. The steroids were the trigger in my case. I look forward to the day when the CDC and IDSA will recognize this debilitating disease as treatable with long term antibiotics, and I hope and pray this will happen soon. My heart goes out to all those before me and those yet to be diagnosed with this terrible disease.
My name is Joshua and I have had Lyme disease since the summer of 2000 when my mother pulled two ticks from my body, one behind my left knee and the other behind my right ear. I never got a bull's-eye rash and I started having joint pain in the fall, and was told by my pediatrician I was having growing pains and fatigue due to my intense karate training. I got physically worse and worse as time progressed. I had extreme fatigue that was unrelieved by rest and sleep. My joints ached and I lost small patches of hair the size of quarters all over my head. I had headaches, could not concentrate in school, lost my short-term memory, and could not play
sports or take karate. I was dizzy and had chest pain and neck stiffness and for a short time I couldn’t walk. With my mother's persistence, the doctor tested me for Lyme disease in the spring of 2001. I tested positive for Lyme and received three weeks of Doxycycline. My symptoms improved and I thought I was better. In October 2001, I had a relapse and I felt like I had the flu with extreme fatigue and severe joint pain to the point I could hardly walk. I came home from school one day and was in the worst pain of my life and I was unable to stand on my own two feet. My mom rushed me to the emergency room and the doctors at the hospital diagnosed me with joint complications due to the flu. They fit me for crutches at the hospital and told me I would be better in about three days. Three days passed and I was not better, but much worse. My mom sent me to school on crutches and I couldn’t finish my school work or play with my friends. I was in extreme pain day and night and even though I was on several pain pills it didn’t relieve my pain but only made me feel worse and gave me stomachaches.
At this point, I looked as sick as I felt and many classmates asked me what was wrong and
if I had cancer. Our pediatrician told my mom that I could not have Lyme because I was already treated for it. I had more blood tests that showed positive for Lyme disease and I was sent to a rheumatologist at the Children's Hospital. He looked at me for about 60 seconds and sent me for
x-rays. Ignoring my positive Lyme test, he diagnosed me with arthritis and told my mom it
would be a long time before I would walk without my crutches. He told my mom to call the office and schedule an appointment to have an operation in two weeks to have my hips drained. My mother ignored the rheumatologist's suggestion to pursue surgery and I went to see an infectious disease specialist. He told me that my symptoms were all in my head and he told me to tell my mom the truth that I was making it up so I didn't have to go to school. I was in the worst physical health I had ever been in, it even hurt for me to talk and he told me to stop pretending. He told my mom I did not have Lyme disease and that antibiotics wouldn’t work. I was misdiagnosed again and my positive Lyme test was overlooked.
My parents could not find a doctor to treat me for Lyme that would be covered by insurance, so
they took me to Dr. Charles Ray Jones, a Lyme literate doctor. My parents paid out of pocket for my treatment and Dr. Jones took the time to listen to me and cared enough to diagnose me properly. I was given Amoxicillin and Zithromax and was walking without crutches after three weeks. I continued my treatment for nine months and had significant improvement in my health.
I have been off all medication now for over a year and a half. I am taking karate classes again and I'm studying for my black belt. I am thankful to God for my health and thankful for the responsible physicians who take the time to listen to their patients even if the patient is a kid.
My name is Elise and I have chronic Lyme disease. Three years ago I was misdiagnosed with rheumatoid arthritis by my primary care physician because I had migrating joint pain. I never saw the tick and I did not have a bull's eye rash. Luckily, as my own health advocate, I did more research and I obtained a second opinion. Two and a half years ago, I was given a clinical diagnosis of Lyme disease from a doctor who understands tick-borne diseases and who uses a lab that is proficient in identifying the antibodies created by the Lyme bacteria. I was treated with seven months of oral antibiotics before I decided it was safe to try and conceive a second child. At this point I had been hosting the disease for over three years. We had intentionally postponed having a second child until we felt we had done our best to rid my body of the dangerous bacteria. I conceived our second child in March 2002 and I entered the pregnancy feeling
confident that we would have a healthy child. The 15-week ultrasound showed a healthy baby with a strong heart and all its organs were functioning normally. At 16 weeks, the remaining test results were all perfect. At 18 weeks, I sensed something was wrong and my instinct was correct. When the time came to deliver our child, the baby boy was dead. Soon after I began wondering
if Lyme disease had caused this tragedy. I had read that Lyme disease could cause miscarriage, but there was no evidence to prove it. I called my Lyme doctor and a lab skilled in detecting the bacteria so I could determine how to test the fetus and the placenta for the bacteria. I needed an answer and I received that answer the next Monday when the OB called me to report that the
fetus and the placenta were PCR-positive for the Lyme bacteria. He concluded that the Lyme bacterial infection had caused the fetal demise. We grieved all over again. How had these small bacteria survived seven months of antibiotics and continued to destroy our lives. We thought that the Lyme disease had been killed after seven months of antibiotics, but we were wrong. If the insurance company would have paid the four hundred dollars for a detailed band blood test and not just the basic blood test they cover, we would have known the disease still invaded my body and we would have been spared the tragedy of losing a child and the cost would have been much less for the insurance company in the end. These insurance companies are blinded by greed.
It pains me today when I think of how many people really have Lyme disease but are being treated for Multiple Sclerosis. Think about it: Nobody knows what causes MS, so why treat it with steroids and not antibiotics? In 1987, when I was pregnant with my daughter, I had a rash on my stomach. The doctor said it looked like some form of shingles, but it didn't hurt. Jacqueline was born a beautiful, healthy girl. During the next two and a half months, we noticed her eyes did not seem to focus. Her legs would turn purplish in color and one time her leg swelled three times its normal size. On June 6, 1988, she passed away from Sudden Infant Death
Syndrome. When I was pregnant with my son, I started having debilitating fatigue. But I was told this was because I was pregnant. After he was born, the fatigue was still there. But now my doctor said it was due to depression because of the loss of my daughter. In 1990, I went to the emergency room because I was vomiting, lightheaded and had pains in my stomach. I was told I had a viral infection. I started having nausea, pain in my left ear and the fatigue was still present.
On October 31, 1992, I had to leave work because I was vomiting, had lightheadedness and I was off-balance with my walking. My mother brought me to the emergency room. When we got there, the nurse replied, "She looks like she's having a stroke." The physicians did blood work and checked me out. I was lying on a stretcher when they told me I should go home and
sleep. After my symptoms became worse, I had a CAT scan and an MRI and I saw a neurologist. I was admitted to the hospital on November 4 and had blood work drawn and was started on steroids. My PCP came in and told me he had news. He said, "You had Lyme disease at one time, but you don’t have it any more." He proceeded to tell me that I had Multiple Sclerosis and life as I knew it would forever be changed. I thought about what my doctor had just told me, but I was never treated for Lyme disease, so how did it go away all by itself? When I got out of the hospital, I asked my PCP if I might still have Lyme and he said no. Over the next month, I had profuse vomiting, Diarrhea and debilitating fatigue. My PCP now stated I had the flu because of my immune system was weak from the MS. Over the years, I would question if Lyme disease was a possibility because I was always so sick. There were so many different symptoms and I was so debilitated that I could not function. My life was a miserable existence. Over the years, I have had steroids intravenously eight times and had been prescribed over fifty different medications for my so many different ailments. Eventually I had been treated with chemotherapy for a legion on the brain. I started experiencing pain throughout my entire body. My nausea was so bad I wanted to die. The light hurt my eyes and if someone hugged me, my whole body would hurt. Clothes bothered my skin and my skin felt like I had bugs crawling in it. With little hope left, my husband and I decided to research my medical records from the hospital I had received care at so many years earlier and we found a positive test for Lyme disease. I brought it to my PCP and he said, "Yes. The blood test was positive, and that's why we did the spinal tap." All those years I was told nothing showed positive for Lyme disease and now my doctor tells
me that a test did show Lyme, but that it was gone now and that maybe I could have Fibromyalgia now on top of my MS. I told him that I wanted to see an infectious disease doctor but he said, "No, because he will say you have Lyme disease and put you on medication that you do not need. Finally, out of desperation, I brought my records to a doctor in New Jersey. He looked at my records, did blood work, and he was the first doctor to say, "You have chronic Lyme disease and you have had it for years. He immediately put me on an aggressive treatment of antibiotics and over the next couple of months my family and I would notice considerable improvement. I got a lawyer and he would subpoena my records from all the doctors and hospitals I saw over the years. I have improved tremendously from where I was two years ago and to think that all of this could have been avoided if I had a competent doctor that didn’t dismiss Lyme disease so easily because he was ignorant about the disease.