Others stories about their jounrey through Lyme Disease.
Karen's Lyme story
I was always outdoors - golf, tennis, camping, hiking, canoeing! I was diagnosed in late 2007 with adrenal fatigue. In Jan 2008, I had a stroke. I had to learn to walk and talk again. Late 2008 I was playing in a golf tournament in the Dominican Republic and had a grand mal seizure. Upon returning home, my journey with doctors began! I simply wanted two to make the same diagnosis. Fortunately, I stayed on antibiotics during this time, just not aggressively enough. I continued to have seizures although 6 neurologists agreed there was nothing wrong with me!! Frustrated with my health and the medical community, I swore off doctors of all kinds. I had three grown children and a husband that worked internationally. We lived in a three story home on acreage with a pool. I lived alone and was afraid to leave the main floor, I was afraid to get in the pool, I was afraid to walk in the yard alone. I could no longer drive and had to rely on friends and neighbors for everything! Late 2009 a friend pleaded with me to see her doctor and I finally gave in - this doctor would change my life - she immediately diagnosed me with lyme disease! My first reaction was, "My Father died at the age of 54 with complications of lyme disease!" Sheer panic, with a side of relief, finally getting a diagnosis. I began treatment, although not aggressively enough. She explained the guarded term to me - llmd - lyme literate medical doctor. I began searching and was fortunate to find one in Florida where we happened to own a condo. I soon met a compassionate, brilliant llmd that I credit for saving my life! He explained I was in for a long road and said it would be expensive. He could not have been more caring, nor honest! So, early Spring 2010 after 2 PICC lines, I had a port implanted and began the treatment supervised by the llmd. I had been diagnosed with late stage lyme disease, Rocky Mountain Spotted Fever, Bartonella and Babesia. The earlier antibiotics had kept me alive but I needed serious treatment immediately. That protocol included 16 hours a day of IVs, 52 pills a day and 3 shots a day. I could not even comprehend what was in store! He said I would get worse before I got better, explained herxing, detoxing, weekly needle and dressing changes, the importance of sterilizing the port. All this, alone, exhausted. I cried, got angry, then got serious! I wanted my life back! It was not easy but in time the seizures got better, and eventually stopped. (Of course by this time, I had fallen so many times, broken teeth out, had numerous stitiches, but I was alive!) By the end of 2011 I was able to drive again! Freedom! MRIs, CT Scans, Brain Specs - all a "normal" day in the life of a lyme patient! By mid 2012, I actually felt I was getting better. Lyme Disease took four years of my life and may take me from this world early due to all the antibiotics and damage done from not getting medical help soon enough, but one thing I do know ... I will help others through this process, I will fight to get this disease recognized, and I will live everyday to the fullest. It made me stronger than ever!!
I was always outdoors - golf, tennis, camping, hiking, canoeing! I was diagnosed in late 2007 with adrenal fatigue. In Jan 2008, I had a stroke. I had to learn to walk and talk again. Late 2008 I was playing in a golf tournament in the Dominican Republic and had a grand mal seizure. Upon returning home, my journey with doctors began! I simply wanted two to make the same diagnosis. Fortunately, I stayed on antibiotics during this time, just not aggressively enough. I continued to have seizures although 6 neurologists agreed there was nothing wrong with me!! Frustrated with my health and the medical community, I swore off doctors of all kinds. I had three grown children and a husband that worked internationally. We lived in a three story home on acreage with a pool. I lived alone and was afraid to leave the main floor, I was afraid to get in the pool, I was afraid to walk in the yard alone. I could no longer drive and had to rely on friends and neighbors for everything! Late 2009 a friend pleaded with me to see her doctor and I finally gave in - this doctor would change my life - she immediately diagnosed me with lyme disease! My first reaction was, "My Father died at the age of 54 with complications of lyme disease!" Sheer panic, with a side of relief, finally getting a diagnosis. I began treatment, although not aggressively enough. She explained the guarded term to me - llmd - lyme literate medical doctor. I began searching and was fortunate to find one in Florida where we happened to own a condo. I soon met a compassionate, brilliant llmd that I credit for saving my life! He explained I was in for a long road and said it would be expensive. He could not have been more caring, nor honest! So, early Spring 2010 after 2 PICC lines, I had a port implanted and began the treatment supervised by the llmd. I had been diagnosed with late stage lyme disease, Rocky Mountain Spotted Fever, Bartonella and Babesia. The earlier antibiotics had kept me alive but I needed serious treatment immediately. That protocol included 16 hours a day of IVs, 52 pills a day and 3 shots a day. I could not even comprehend what was in store! He said I would get worse before I got better, explained herxing, detoxing, weekly needle and dressing changes, the importance of sterilizing the port. All this, alone, exhausted. I cried, got angry, then got serious! I wanted my life back! It was not easy but in time the seizures got better, and eventually stopped. (Of course by this time, I had fallen so many times, broken teeth out, had numerous stitiches, but I was alive!) By the end of 2011 I was able to drive again! Freedom! MRIs, CT Scans, Brain Specs - all a "normal" day in the life of a lyme patient! By mid 2012, I actually felt I was getting better. Lyme Disease took four years of my life and may take me from this world early due to all the antibiotics and damage done from not getting medical help soon enough, but one thing I do know ... I will help others through this process, I will fight to get this disease recognized, and I will live everyday to the fullest. It made me stronger than ever!!
Lauren’s Lyme story: In August of 2010, Lauren, 12 years old was hit on the head by a wake board at camp. It required 9 staples to her head. She also, at the time had a rash on her side. It was diagnosed as a staph infection. She was given 2 weeks of Doxycycline. Not long after she started to develop headaches not treated by Advil etc. The headache became chronic and never went away. Her pediatrician referred us to a neurologist who then diagnosed her with migraines and post concussion syndrome. For a year and a half we went through 6 different migraine type drugs. Nothing seemed to help the headache. The doctor kept saying that we had to keep trying different meds. His then diagnosis was new daily persistent headaches. What is that??? She went into the local children’s hospital for IV medication for headaches, after 4 days she came out of the hospital with the same headache. We tried acupuncture and neuro chiropractic care as well as cranial sacral massage. Depression started to set in as well as a host of cognitive, neuro, and fatigue problems. School became stressful. They then wanted to try Botox. After 2 rounds and still no relief I started Googling. Lyme kept coming up as a cause. When I asked the doctor point blank about Lyme his reply was” this was not Lyme, we do not have Lyme in the south.” I started seeking out another doctor who would investigate and test further. Sure enough in April of 2013 the Igenex test was positive for Lyme. We started treatment soon after and are currently treating. She never remembered a tick bite and we never saw a bullseye rash. We don’t know when how or where she contracted the lyme bacteria.
Sue's Lyme Story
I have been sick with fatigue, brain fog, muscle pain , joint pain and severe headaches for so many years. Many doctors and many diagnosis later such as Epstein Barr virus, CFS, fibromyalgia and there wasn't really much that could be done. Every year my symptoms got worse and some new ones came, such as memory issues, heat like sensations in my feet, trouble focusing, visual disturbances and terrible anxiety and depression.The summer of 2012 I became really ill with first a bad migraine that wouldn't go away, then severe fatigue, no appetite, unable to get out of bed for days at a time. After 5 or 6 hrs of trying to just do things around the house I would be exhausted and was on the couch a lot when not in bed. I kept telling my husband something is really wrong and the doctors are missing it.You become so hopeless when you feel so bad and can't seem to get real answers, only told there's not much we can do for you.
My daughter was at a 4 H meeting and the speaker there was talking about Lyme and the dangers,etc of it. My daughter came home with a pamplet about Lyme, showing the symptoms. I had all the symptoms and decided to ask to be tested for it. I tested positive with the Elisa test and the Western Blot. Finally an answer I thought and I cried tears of relief but also tears of fear. The first Infectious Disease doctor I went to wouldn't even look at my test results and told me I didn't have Lyme , there was no such thing in the South. So I went to another Infectious Disease doctor who looked at my tests and listened to my symptoms and in the first five minutes said you have Chronic Lyme disease. Immediately I was put on IV Rocephin. It didn't take long to discover my health insurance didn't want to pay for my IV treatment. They finally agreed to pay for only 28 days of the IV. I am now on oral Doxycycline as that is all the Infectious Disease doctor can prescribe according to my insurance! I know people that have Lyme and many go to LLMD doctors , all out of state because we have none in the state of Georgia. This is expensive and insurance companies won't pay for their treatment. But when you feel as bad as we do with Lyme, all you want to do is to get better, to get your life back! We live in fear of what Lyme may do to us if we don't get better. Will we end up in wheelchairs, bed ridden like so many or worse?
As for me I am continuing my fight! Not only my fight to get better from this miserable disease but my fight to get treatment for it. It outrages me that anyone has to fight just to get treatment, why are we allowed to suffer?? There needs to be more treatment available and more doctors taught how to treat in every state!! There needs to be less ignorance about this disease not existing in the South. This is just absurd . Get the research going here in the South, then tell me we don't have it. But don't tell me we don't have it when there is no proof!!
I end this with I'm thankful for the support groups out there, for they keep me encouraged, they give me hope when I fear there is none and they understand this battle when no one else could possibly grasp our fight. We didn't ask for this horrific disease only to be turned away to continue suffering.
I have been sick with fatigue, brain fog, muscle pain , joint pain and severe headaches for so many years. Many doctors and many diagnosis later such as Epstein Barr virus, CFS, fibromyalgia and there wasn't really much that could be done. Every year my symptoms got worse and some new ones came, such as memory issues, heat like sensations in my feet, trouble focusing, visual disturbances and terrible anxiety and depression.The summer of 2012 I became really ill with first a bad migraine that wouldn't go away, then severe fatigue, no appetite, unable to get out of bed for days at a time. After 5 or 6 hrs of trying to just do things around the house I would be exhausted and was on the couch a lot when not in bed. I kept telling my husband something is really wrong and the doctors are missing it.You become so hopeless when you feel so bad and can't seem to get real answers, only told there's not much we can do for you.
My daughter was at a 4 H meeting and the speaker there was talking about Lyme and the dangers,etc of it. My daughter came home with a pamplet about Lyme, showing the symptoms. I had all the symptoms and decided to ask to be tested for it. I tested positive with the Elisa test and the Western Blot. Finally an answer I thought and I cried tears of relief but also tears of fear. The first Infectious Disease doctor I went to wouldn't even look at my test results and told me I didn't have Lyme , there was no such thing in the South. So I went to another Infectious Disease doctor who looked at my tests and listened to my symptoms and in the first five minutes said you have Chronic Lyme disease. Immediately I was put on IV Rocephin. It didn't take long to discover my health insurance didn't want to pay for my IV treatment. They finally agreed to pay for only 28 days of the IV. I am now on oral Doxycycline as that is all the Infectious Disease doctor can prescribe according to my insurance! I know people that have Lyme and many go to LLMD doctors , all out of state because we have none in the state of Georgia. This is expensive and insurance companies won't pay for their treatment. But when you feel as bad as we do with Lyme, all you want to do is to get better, to get your life back! We live in fear of what Lyme may do to us if we don't get better. Will we end up in wheelchairs, bed ridden like so many or worse?
As for me I am continuing my fight! Not only my fight to get better from this miserable disease but my fight to get treatment for it. It outrages me that anyone has to fight just to get treatment, why are we allowed to suffer?? There needs to be more treatment available and more doctors taught how to treat in every state!! There needs to be less ignorance about this disease not existing in the South. This is just absurd . Get the research going here in the South, then tell me we don't have it. But don't tell me we don't have it when there is no proof!!
I end this with I'm thankful for the support groups out there, for they keep me encouraged, they give me hope when I fear there is none and they understand this battle when no one else could possibly grasp our fight. We didn't ask for this horrific disease only to be turned away to continue suffering.
Dori’s Story: In July of 2011 I found a tick in my hair, but didn’t think much of it. About two weeks later, I suddenly became very sick with fever, exhaustion, and extreme pain in my head, neck, and back. Additionally, a strange rash appeared all over my body. I saw my gp, who prescribed an antibiotic and sent me home. That same afternoon I had a bad reaction to the antibiotics, so my parents took me to the ER where my test results came back normal, with the exception of a high SED rate. None of the doctors knew what kind of rash I had. If I scratched on and around it, the rash itself would actually move to wherever my fingernails went. I would learn much later that this was a very rare rash that is a part of Lyme Disease. On that day, the doctors changed my antibiotic, prescribed prednisone and diagnosed me with a bacterial infection and bedbugs! Within the next couple of weeks, and was glad that whatever I had seemed to be going away. Life seemed to return to normal and, other than feeling a little more tired than usual, nothing outstanding happened until the beginning of the next year. In January 2012 I began my Freshman year of college, but in the middle of my first week of classes, sickness returned with a vengeance. I ran a high fever, my head pounded with a pain that could not be controlled, and my neck and back hurt so bad I could not stand up and walk. My parents drove me to my gp’s office, where I required a wheelchair. My doctor sent me straight to the ER, suspecting meningitis. I was hospitalized, had tests run, MRI and spinal tap. Same … all normal, except for the high SED rate. Once again, the doctors could not pinpoint the problem and concluded that I had “an unknown strain of mono”. I had missed three full weeks of school, and had no choice but to withdraw for the semester. From that point on, I struggled with joint and muscular pain that would come and go in intensity. During that spring and summer, I was always tired and seemed to get sick very easily. I had various bouts of illnesses which required more hospital visits. There was never a diagnosis other than something acute, such as bronchitis or the flu. I planned on going off to college in Brunswick for the Fall 2012 semester, hoping I could manage without health problems getting in the way. Unfortunately, within the first couple of weeks of college, I experienced pain which caused me to miss numerous classes. One night in September I had terrible pain in my head and neck and went to the ER. The knowledgeable doctor there could not find an immediate cause for my pain. He asked me what I was in school for, and I told him I wanted to be a Physician’s Assistant. He then asked me what I thought I had. I told him that my family and I had wondered if I had Lyme Disease. The doctor agreed, saying Lyme Disease was a very plausible explanation, but that this was not something that would be diagnosed in an ER. He gave me a shot for my pain, and sent me back to my dorm. On Thursday, October 4th, I attended classes normally, but that afternoon noticed my knees were red and swollen. The redness, swelling, and pain increased throughout the evening, and by that night I was in terrible pain. I went to the ER and they could not find a reason for my symptoms or anything obviously wrong with me. Once again, the ER doctor said the Lyme Disease was a possibility, but I would need to see a specialist for this. They gave me a shot for pain and I returned to my dorm. About three hours later, my pain had become excruciating and my roommate took me back to the hospital. All they could do was administer another shot for pain. I hurt so bad that I could not use my feet to operate the pedals on my car and had to have a friend drive me the three hour trip home. Once again, I had no choice but to withdraw from school. The next three weeks were pure hell. During that time I saw a rheumatologist, who found that I had developed antibodies to Borelia Burgdorferi (Bb), which is the actual causative agent of Lyme Disease. However, because the Western Blot Lyme test was negative, she couldn’t officially diagnose me with that. Instead, she referred me to the Mayo Clinic, who scheduled me for January 29, 2013. The pain was relentless, though. On October 23, after being awake all night in tears, my parents decided enough was enough, and drove me to the Medical College of Georgia in Augusta. The doctor who saw me there was wonderful; he spent a long time listening to my story and then promptly diagnosed me with Lyme Disease. My parents and I were so excited to finally have a diagnosis, which meant I could finally get treated and hopefully get better. He started me on a month’s worth of antibiotics and said my primary doctor could take over from there. The good news was I had a diagnosis, but the bad news was the harsh reality I faced when I returned home. Despite the fact that I had medical records from Augusta listing my diagnosis, my doctor at home did not believe I had Lyme Disease. He stated Lyme Disease did not exist in Georgia! In fact, he did not even want a copy of the hospital records that I brought from Augusta. I went home and had no idea what to do next. I improved for a couple of weeks on the oral antibiotics, but then began to decline again. I was miserable; I was in a holding pattern, awaiting my Mayo clinic appointment. After getting in touch with other people from the Georgia Lyme Disease Connection, I got the name of an infectious disease specialist in Georgia. I saw her on December 6, and she concurred that by history alone, she could diagnose me with Lyme Disease. When I told her about the rash, she was fascinated. She said she knew exactly what I was talking about; that was a very rare rash that occurs in Lyme Disease. It is so rare, that in her twenty years of practice, she had never actually seen it, only read about it. They ran a large battery of tests for confirmation and to rule out other diseases. Unfortunately, during this time I also started having seizures, which resulted in more hospital visits. My treatment was finally started on January 10th, 2013. They inserted a PICC line and I administered my rocephin every night at home. I began feeling better right away and experienced a lot of improvement. Since I had a firm diagnosis, I was able to cancel my appointment at the Mayo Clinic. It has not been all good news, though. On January 19, 2013, I woke up at 4:00 a.m. because both of my legs were continually moving as if I were riding a bicycle. Nothing I did could make them stop. By 11:00 a.m. I was absolutely exhausted. My parents drove me to the hospital in Macon, where I had a major seizure in the waiting room and was subsequently admitted for the next five days. Even though I was getting treatment and getting better, the Lyme had progressed to my neurological system. The neurologist there told me I did not have epilepsy, and put me on Keppra to prevent future seizures. He said the uncontrollable motor movements were a pre-cursor to the seizure. I know my story is starting to sound like a broken record. I went home, but continued to experience tremors and seizures even though I was taking the Keppra. There was more bad news, though. My father lost his job and we lost our health insurance. Going to the neurologist was out of the question. Then I had another blow: One night in late spring I had abdominal pain so severe that I had to go to the ER. They found that I had gallstones; therefore, I had surgery on May 8th to remove my gallbladder. A couple of weeks later I had another major seizure and was again admitted to the hospital in Macon for four days. The neurologist said there is no need for him to see me until I have a 72 hour EEG, which requires up-front money. Since my father lost his job, and we now owe the hospital for surgery and a four-day stay without insurance, we have to postpone that procedure until further notice. There is some good news – my father was just offered a job last week and my mother will start a new job this coming week, so we will once again have health insurance. The reason I even mentioned that is to explain why I am presently in a “holding pattern” with my Lyme Disease. My parents not only want to get my EEG study done, they also want to take me to a Lyme Literate Medical Doctor. With their new jobs, this is a plan that will definitely occur in the very near future. Although I am definitely better than I was, I will be on anti-seizure medication indefinitely and I have arthritis in my knees and hands that is permanent. When I do see a LLMD, I will certainly follow his advice and do everything I can to get back to ‘the old me’. I desire very much to return to college as soon as possible. I still want to be a Physician’s Assistant. I have learned so much through this painful experience, and want to use it in a positive way. One day I hope to be able to help others with Lyme Disease to quicken their treatment, lessen their pain, and be an advocate so that they do not have to go through what I did.