My journey into the Lyme wars started in the summer of 1999. After a hike through the woods I found a tiny tick. Without any thought, the little nuisance was removed and life went forward. Soon a horrible itching rash developed on my back. Thinking it was only a bad heat rash, we ignored the problem.
My health began to decline, and in October of 2000 I found myself in the emergency room with vertigo. During the dizzy spells, my eyes literally moved up and down at a rapid speed much like a television horizontal control gone haywire. For a year and a half the spells came and went leaving me unable to do anything other than sit or crawl. Doctors pronounced my illness first as Labyrinthitis, then autoimmune inner ear disease. Steroids and medications helped get me back on my feet until the next round of problems began.
Over the next few years, my body went in self-destruct mode. I had kidney infections, kidney stones, hearing loss, tumors, cysts on kidneys and liver, uterine tumors, numbness, migraines, bleeding problems, eye problems, Charlie-horse cramps that lasted for hours, arthritis type pains in joints, dizzy problems came and went, nerve damage, horrible fatigue, and the list goes on and on.
Tuesday, August 23, 2011
Friday, August 19, 2011
Only Half of Me--Sara Hesley: Part 2
Was my immune system wrecked?
As a trained herbalist and health-conscious individual, I changed my diet, used herbal medicines as needed for the ever-growing list of ailments, and I started doing some research into what might be going on. I’d feel great for while, and then, out of the blue, I’d be slammed with another round of misery. What started out like the flu--fatigue, achy joints, stiff neck and headache--was getting progressively worse with each new episode. These episodes of assault were lasting for weeks at a time with a distinct cycle of symptoms, to the extent that I started fearing for how much more my body could take without suffering permanent damage.
Jesse and I moved to the San Francisco Bay Area in 2005. I’d written off graduate school by then because I was too sick too frequently and no longer felt like I could make a commitment to anything of significance. The chronic digestive issues were nothing compared to what was happening now. In 2006, I found myself in the ER at UCSF Hospital from the severity of the current assault. Amongst many other things, I’d experienced a temporary paralysis of my limbs. The ER doctors ran a battery of tests and couldn’t find anything. They referred me to specialist who ran another battery of tests and decided I had an autoimmune condition involving my nervous system. He surmised that I would need to take steroids for the rest of my life.
I declined and followed-up with another physician who ran another battery of tests and found nothing. To each of these doctors, I specifically noted the tick bites with the bull’s eye rash and the deterioration of my health from that specific moment in time onward. Each of them ignored that piece of the puzzle. Without another answer, it became easy for me to do the same.
As a trained herbalist and health-conscious individual, I changed my diet, used herbal medicines as needed for the ever-growing list of ailments, and I started doing some research into what might be going on. I’d feel great for while, and then, out of the blue, I’d be slammed with another round of misery. What started out like the flu--fatigue, achy joints, stiff neck and headache--was getting progressively worse with each new episode. These episodes of assault were lasting for weeks at a time with a distinct cycle of symptoms, to the extent that I started fearing for how much more my body could take without suffering permanent damage.
Jesse and I moved to the San Francisco Bay Area in 2005. I’d written off graduate school by then because I was too sick too frequently and no longer felt like I could make a commitment to anything of significance. The chronic digestive issues were nothing compared to what was happening now. In 2006, I found myself in the ER at UCSF Hospital from the severity of the current assault. Amongst many other things, I’d experienced a temporary paralysis of my limbs. The ER doctors ran a battery of tests and couldn’t find anything. They referred me to specialist who ran another battery of tests and decided I had an autoimmune condition involving my nervous system. He surmised that I would need to take steroids for the rest of my life.
I declined and followed-up with another physician who ran another battery of tests and found nothing. To each of these doctors, I specifically noted the tick bites with the bull’s eye rash and the deterioration of my health from that specific moment in time onward. Each of them ignored that piece of the puzzle. Without another answer, it became easy for me to do the same.
Tuesday, August 16, 2011
Only Half of Me--Sara Hesley: Part 1
I grew up in a beautiful small town in western Kentucky. I spent much of my childhood playing outdoors at my grandmother’s little farm “in the country” and, as a teenager, with a growing love for nature, I frequented the Land Between the Lakes for long hikes, picnics and camping trips. Ticks were just part of being outside. We’d do tick-checks when we got home and flush the little buggers down the toilet. They were common and no one seemed to think anything of them. Nor did anyone seem to know the potential dangers of the illnesses they carry. As creepy as ticks may be, they didn’t keep me from doing the things I loved or visiting places of beauty in nature.
As a child and teenager, I was healthy, strong and athletic. I swam every day in the summer, played varsity tennis from the seventh or eighth grade through my junior year of high school, often accompanied my father on golf outings and helped my mother in the garden. I never had a broken bone, any sort of surgery, or any memorable illness until my senior year. During the late summer of 1995, I accompanied a friend on an off-trail exploration through a forest in Cadiz, Kentucky.
At some point during our hike, I discovered a multitude of ticks crawling all over my legs, as did my friend. They were too many to count and had somehow managed to find their way past pant legs down to my ankles, and socks pulled up to my knees. Both of us were covered from the hips down with these tiny monsters. It was the first time I experienced ticks in mass numbers, so many of them covering such a large area of my body. While a random tick here or there was common, this was a new experience with a distinct sense of urgency.
As a child and teenager, I was healthy, strong and athletic. I swam every day in the summer, played varsity tennis from the seventh or eighth grade through my junior year of high school, often accompanied my father on golf outings and helped my mother in the garden. I never had a broken bone, any sort of surgery, or any memorable illness until my senior year. During the late summer of 1995, I accompanied a friend on an off-trail exploration through a forest in Cadiz, Kentucky.
At some point during our hike, I discovered a multitude of ticks crawling all over my legs, as did my friend. They were too many to count and had somehow managed to find their way past pant legs down to my ankles, and socks pulled up to my knees. Both of us were covered from the hips down with these tiny monsters. It was the first time I experienced ticks in mass numbers, so many of them covering such a large area of my body. While a random tick here or there was common, this was a new experience with a distinct sense of urgency.
Friday, August 12, 2011
I Will Beat These Beasts--Lydia Niederwerfer:Part 2
How in the world was I able to afford his fee? The initial consultation for Lyme was 2-3 hours. We had one consultation. He agreed to take the fee in payments so that when I did find a Lyme Literate Medical Doctor, I would be able to see him/her. A day or two later, he called me with a referral of a doctor who was willing to see me. What a relief, and he was only an hour away. The tests confirmed my suspicions. I was found positive for Babesia, Lyme, and Bartonella.
In September 2009 I began antibiotic treatment. The doctor had recovered from Lyme and Babesia as well. He was aware of the CDC and IDSA guidelines; he knew first hand that some of us do not recover as quickly as the guidelines state, for he had experienced this himself. I am grateful for his diligence to help me become well. Although the road I traveled earlier with Lyme was horrible, I was blessed that this time that I did not experience the symptoms all at once that had caused me to become bedridden.
At first, I thought that I could not go through this again because I experienced the sensation of burning if anything touched my skin. With every breath I took, I felt the burning pain. It became very difficult for me to walk once again. I had to bring out the cane and knee braces I had once used. Oh, how I despised that! The night sweats, fever and chills were overwhelming at times. I couldn’t understand how you could be burning up and freezing at the same time. The night sweats drenched my clothes and my bedding every night.
In September 2009 I began antibiotic treatment. The doctor had recovered from Lyme and Babesia as well. He was aware of the CDC and IDSA guidelines; he knew first hand that some of us do not recover as quickly as the guidelines state, for he had experienced this himself. I am grateful for his diligence to help me become well. Although the road I traveled earlier with Lyme was horrible, I was blessed that this time that I did not experience the symptoms all at once that had caused me to become bedridden.
At first, I thought that I could not go through this again because I experienced the sensation of burning if anything touched my skin. With every breath I took, I felt the burning pain. It became very difficult for me to walk once again. I had to bring out the cane and knee braces I had once used. Oh, how I despised that! The night sweats, fever and chills were overwhelming at times. I couldn’t understand how you could be burning up and freezing at the same time. The night sweats drenched my clothes and my bedding every night.
Tuesday, August 9, 2011
I Will Beat These Beasts--Lydia Niederwerfer:Part 1
The Story Begins
After a gorgeous day of picnicking and canoeing, I discovered a tick buried in my shoulder. Who knew that this small insect would change my life? I went to the ER and was given 10 days of Doxycycline just to be cautious. A couple days later, I had the Bull’s Eye rash, mild headaches, minor flu-like symptoms, and a stiff neck. The standard regimen seemed to help because I felt better.
A couple weeks later, I began getting stiff knees. Besides my stiffness, I was experiencing headaches, hot flashes, chills and fatigue. I asked for another treatment of antibiotics and was refused, not only by one doctor, but many. The Western Blot and Elisa tests were defined as negative, only 3/5 bands positive with others described as IND. Despite the tick, all the early clinical symptoms and some positive bands, the doctors refused to think Lyme was to blame. It had to be something else.
After numerous tests to rule out ms, lupus, meningitis, rheumatoid arthritis, celiac disease, etc., my central nervous system functions began to go awry. Quickly, I became completely debilitated. It was as if someone poured a bucket of symptoms over my body all at once. The list was endless: severe nerve pain, one stiff hip, uncontrollable shaking of hands and arms, constant low grade fever, peripheral neuropathy, temporary loss of sight, tunnel vision, chest pains, severe pain all along my spine, flu-like symptoms, loss of night vision, loss of speech, loss of motor functions, loss of coordination, difficulty walking, numbness and tingling of head, hands and feet, arthritis, short term memory loss, loss of hair, loss of cognition, inability to hold urination, diarrhea, and severe migraines. With each breath my entire body burned. I hoped each breath I took would be my last. I became bedridden, severely depressed and unable to do any work. I had to endure the indignity of having to be bathed and clothed by my husband.
After a gorgeous day of picnicking and canoeing, I discovered a tick buried in my shoulder. Who knew that this small insect would change my life? I went to the ER and was given 10 days of Doxycycline just to be cautious. A couple days later, I had the Bull’s Eye rash, mild headaches, minor flu-like symptoms, and a stiff neck. The standard regimen seemed to help because I felt better.
A couple weeks later, I began getting stiff knees. Besides my stiffness, I was experiencing headaches, hot flashes, chills and fatigue. I asked for another treatment of antibiotics and was refused, not only by one doctor, but many. The Western Blot and Elisa tests were defined as negative, only 3/5 bands positive with others described as IND. Despite the tick, all the early clinical symptoms and some positive bands, the doctors refused to think Lyme was to blame. It had to be something else.
After numerous tests to rule out ms, lupus, meningitis, rheumatoid arthritis, celiac disease, etc., my central nervous system functions began to go awry. Quickly, I became completely debilitated. It was as if someone poured a bucket of symptoms over my body all at once. The list was endless: severe nerve pain, one stiff hip, uncontrollable shaking of hands and arms, constant low grade fever, peripheral neuropathy, temporary loss of sight, tunnel vision, chest pains, severe pain all along my spine, flu-like symptoms, loss of night vision, loss of speech, loss of motor functions, loss of coordination, difficulty walking, numbness and tingling of head, hands and feet, arthritis, short term memory loss, loss of hair, loss of cognition, inability to hold urination, diarrhea, and severe migraines. With each breath my entire body burned. I hoped each breath I took would be my last. I became bedridden, severely depressed and unable to do any work. I had to endure the indignity of having to be bathed and clothed by my husband.
Friday, August 5, 2011
Remembering a Life I Once Knew--Martha B
As I sit with pen in hand, weighing upon how to give an account of my battle with Lyme, I have no recollection of a tick or mosquito bite resulting in a bulls-eye rash or flu-like symptoms. I question how I got to this place in my life. I remember a life I once knew--what it felt like to run three miles a day, freedom to socialize with friends at a favorite neighborhood restaurant, eating without thought of the biological aftermath, and living without annoying and debilitating symptoms every moment of the day. I dream of a day where I can be free of Lyme, and will find normality as I join others in living.
My journey into a life with Lyme began unknowingly at the age of 31. I was a newlywed. I married a wonderful man at St. Mary’s Cathedral in Memphis, Tennessee, on March 1, 2003. It was not an expensive wedding, but a beautiful one. Shortly after, we began to train for the Peachtree 10K in Atlanta, Georgia. We had planned it early on and had been looking forward to it for months; it would be the first race would run together as a married couple.
Three weeks before our July 2 departure, I woke one morning to find I was severely constipated, and I knew at that moment that it was not just an ordinary episode. I did all I knew to relieve the symptoms, but was unsuccessful. The symptoms stayed with me all day and all night, and were more intense than anything I had ever experienced. I felt awful, but made the trip and successfully ran the six-mile race. Once I returned, the doctor’s visits began.
My journey into a life with Lyme began unknowingly at the age of 31. I was a newlywed. I married a wonderful man at St. Mary’s Cathedral in Memphis, Tennessee, on March 1, 2003. It was not an expensive wedding, but a beautiful one. Shortly after, we began to train for the Peachtree 10K in Atlanta, Georgia. We had planned it early on and had been looking forward to it for months; it would be the first race would run together as a married couple.
Three weeks before our July 2 departure, I woke one morning to find I was severely constipated, and I knew at that moment that it was not just an ordinary episode. I did all I knew to relieve the symptoms, but was unsuccessful. The symptoms stayed with me all day and all night, and were more intense than anything I had ever experienced. I felt awful, but made the trip and successfully ran the six-mile race. Once I returned, the doctor’s visits began.
Tuesday, August 2, 2011
Unbalanced--Randy Gibson
My ordeal with Lyme Disease began when I was infected in October 1989 on a trip to New York. Unfortunately I was unaware I had been bitten by a Lyme tick, though I returned home to Twentynine Palms, California with a rash on my forearm. We had never heard of Lyme disease at this point and it was nearly two years later that we would hear about it.
At first I had flu like symptoms and as a pastor had to struggle through the Thanksgiving and Advent season. I had assumed that I had a bad case of the flu and would just have to get by till it passed. I was terribly worn down by January when I first saw a Doctor. He too said I just had the flu and to take it easy.
A couple weeks later I went back with severe chest pain and after an Xray he said I had possible pleurisy and gave me some antibiotics. I had some improvement but was still not back to normal. I was scheduled for a 6-week visit in Argentina in April with the Rotary Club and made that trip with a relapse in the third week. I was staying with a doctor in Buenos Aires who gave me more antibiotics and I felt better in a couple of weeks.
At first I had flu like symptoms and as a pastor had to struggle through the Thanksgiving and Advent season. I had assumed that I had a bad case of the flu and would just have to get by till it passed. I was terribly worn down by January when I first saw a Doctor. He too said I just had the flu and to take it easy.
A couple weeks later I went back with severe chest pain and after an Xray he said I had possible pleurisy and gave me some antibiotics. I had some improvement but was still not back to normal. I was scheduled for a 6-week visit in Argentina in April with the Rotary Club and made that trip with a relapse in the third week. I was staying with a doctor in Buenos Aires who gave me more antibiotics and I felt better in a couple of weeks.
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