I was diagnosed with Lyme disease in April 2009, after the appearance of a bull's eye rash on my left side just below the waist on April 18 and two physical symptoms, extreme fatigue and headaches that began on April 23. I ignored the rash at first, treating it as I do frequent skin rashes. I went online and researched pictures of insect bites when the rash did not go away after using my prescribed skin cream for a few days. The picture identified the rash as "Lyme Disease." I had only heard of the disease and proceeded to read briefly. Since I had none of the symptoms, I ignored it until I started having the fatigue and headaches a few days later. I made an appointment with my primary care physician, who has been trained by an expert in Lyme disease. He immediately diagnosed me. I developed a secondary rash 2 weeks later prompting more aggressive treatment than doxycycline and started Rocephin shots.
If there is a bull's eye rash, it usually appears 3-30 days after being infected by the tick, I tracked my physical locations in the last 30 days: 3 days before I spent the night in Cocoa, FL and ate at a local restaurant that required walking through an unpaved parking lot with low bushes and trees; 28 days before, I spent 3 days in Birmingham, AL and went to the Botanical Gardens; all other days were based from my home on 6 acres of wooded land in a rural area of northwest Georgia where there is an abundant population of deer.
I am a retired public school teacher, and my husband and I enjoy traveling. I was working part-time in a GA Department of Corrections Drug program teaching Relapse Prevention and mentoring women in the program and very active in my church when I was diagnosed with possibly the fastest growing infectious disease in the United States - Lyme Disease.
Even though I was diagnosed within 2 - 4 weeks, depending upon where I actually came in contact with the tick, I have had difficulty recovering from the disease. My doctor follows the Lyme doctors' recommendations. I have also sought alternative treatments through mild hyperbaric therapy, and foot bath detox through my chiropractor who is familiar with the importance of chiropractic care in assisting Lyme patients. Additionally, I take supplements that I have found through research and some recommended by my primary care physician, who supports alternative treatments.
Since the beginning, my primary care physicianhas had me to keep a daily log and sees me every two weeks. I have the option to FAX him regarding any changes, needs, or concerns so that I can keep in contact with him. I have been blessed to have such a wonderful, caring doctor!
I have also had the spiritual support of many faithful friends, family, and church family praying for me. Most of all, my husband, Randle, has been the best caregiver and my best supporter. I dont know what I would have done without him. I chose a picture of us in Theodore Roosevelt Park, taken when we went on a tour with our church choir in June of 2010.
Since then, I have developed secondary health issues and gradually had to give up my part-time job and all activities. Right now I am very limited in going anywhere. We believe that this will improve, and God is healing me. He has a plan and a purpose for our lives and has already used me to help others because of what I've experienced.
Most recently, I have felt that I am learning the lesson of being content. At times I have had to reinvent me and focus on things I can do instead of what I can't do. I get weary and weepy, but my faith in God as the Healer and my support system encouraging me to keep persevering, help me develop another attribute that we all need, endurance.
My name is Elizabeth Williams. I'm 18 years old and live with Chronic Lyme Disease. I have lived in Georgia all of my life and currently live in the Vidalia area. Even though I can't be one hundred percent sure, I believe that I contracted Lyme after a fishing trip when I was five. Shortly afterwards, we found a tick embedded in my back. After removing it, we didnt even think of Lyme.
I am not sure exactly when I started to notice symptoms, but remember always feeling different than everyone else. One symptom I had was stomach problems the pain would not seem to go away. I went to a few doctors and they said it was possibly gas, ulcers, acid reflux, or celiac disease. I also remember having muscle and bone pain that everyone said was growing pains. I asked my doctor about this and he brushed it off as the same thing. Another problem was with my hands: they were always blotchy and freezing. It was very uncomfortable because people would always say things about them and ask questions. These symptoms never had an answer; I just figured that this was the way I was.
When I was 15, I started having nausea and fatigue that came on quickly. Other symptoms followed - throat problems and pain, fast heartbeat, dizziness, ringing, humming and pain in ears, headaches, muscle and joint pain, brain fog/confusion, trouble concentrating. These are most of them, not counting the others I mentioned.
It seemed like I was always going to doctor after doctor. The doctors I saw were smart, and most of them were very nice, but they had no idea what was going on. It did not help that all the tests they ran came back negative. One doctor I went to suggested that I may have Chronic Fatigue Syndrome or fibromyalgia and told me to check it out. After learning more about it, we set up an appointment with a well-known and well-respected rheumatologist. After ruling out lupus, she made a diagnosis of fibromyalgia. I was so relieved and ready to start getting better. However, it did not take long for me to start second-guessing this diagnosis. After doing much research, I found that fibromyalgia seemed more like a symptom or syndrome than a disease itself. Something just did not seem right, it didnt click. I knew that whatever I had was even more serious.
My mom started searching the Internet with my symptoms and learned about Lyme disease. After I read about it, I KNEW that this was what had to be wrong with me! We asked my rheumatologist about it, and she said that it was nearly impossible because Lyme was not really in Georgia. She then told me about a study that the CDC was conducting. The only reason that I wanted to do it was because she thought that participants might be tested for Lyme disease. However, once I was in the study, I asked them about the Lyme test, and they said that there was not one! To this day, they cant find my results from that study.
We were convinced that I had Lyme disease so we found a Lyme-literate doctor and made an appointment. He spent around an hour with us and was extremely thorough. He made a clinical diagnosis of Lyme disease. I later tested positive by Western Blot. He strongly suspected that I had Bartonella and Babesia, too. Because it was untreated for years, I now have to be on antibiotics for a long time, and it may take a while for me to get better.
Now that I look back, everything makes sense. Every symptom that I thought was crazy is just typical of Lyme. If I had just seen one pamphlet or one TV program about Chronic Lyme Disease, I know that I would have figured all of this out earlier. That would have saved me a lot of trouble. That is why Lyme disease awareness is so important to me, and I will continue to tell my story whenever I can.
Editors note: We can't stress enough that Lyme and tick-borne diseases must be added to medical providers diagnostic radar screens. We hear all too frequently that Lyme is misdiagnosed because its believed to be rare - medical providers may believe Georgias reported Lyme statistics accurately reflect the true number of cases. Beware: Lyme cases in Georgia and other southeastern states were not counted using CDCs surveillance criteria for many years making it erroneously appear as if we only had a few cases. Even now, there are differences in reporting practices from state to state: what counts as a case in one, may not in another. Thousands of patients have reported they contracted Lyme in the Southeast and it appears their cases were not counted. Other southern advocates report they hear the same. In 1989 the CDC reported Georgia was 4th highest in the nation with 715 CDC-acknowledged LD cases. They documented native cases from 27 counties. While changes to reporting practices may disappear disease statistics, unfortunately, they do not stop the disease itself.
I have seen first hand what Lyme disease can do to destroy your health and the challenge that living with Lyme presents on a daily basis. While I have received numerous tick bites throughout my life, I received one in particular about six years ago that left a large red bump on my abdomen where the tick had been. I was living with my husband, sons and two dogs in Fayetteville, GA, on a heavily wooded lot near a lake. After observing my rash, my family physician there prescribed Doxycycline for several weeks. However, we were in the process of relocating out-of-state, and I did not take the antibiotic faithfully during the moving process.
Over the next year, I began having strange symptoms that would come and go: lightheadedness, fatigue, spikes in my blood pressure (which is normally low), tremors, frequent sinus infections and insomnia. I developed a flu-like illness that lasted for over a month and lead to pneumonia. I sought medical care from various neurologists, rheumatologists and ENT doctors and made numerous trips to the ER. I was told that my symptoms might be from anxiety, the sinus infections and/or osteoarthritis issues in my cervical spine. One doctor incredibly advised me to drink alcohol more often and to take more hot baths!
My symptoms worsened in the following two years with intense neck and back pain, headaches, speech and memory issues, nausea, unrelenting soft tissue pain, fatigue, blurred vision, stiff and painful joints and constant muscle spasms and pain. My lung capacity has been diminished to approximately 70% of capacity for the last several years with no clear explanation. I have seen over 50 doctors and have been diagnosed with everything from osteoarthritis to fibromyalgia to undifferentiated connective tissue disease as well as Epstein Barr virus. The doctors in this area (Texas) are quick to dismiss a Lyme diagnosis. They simply write more and more prescriptions for Lyrica and various pain killers.
I have seen two Lyme-literate doctors who, despite the fact that my blood work tests were negative by CDC standards, both confirmed a Lyme diagnosis because my blood work showed strong evidence of Lyme exposure and because of my clinical symptoms, tick bite, and previous rash. Although I have taken some oral antibiotics for much of the last two years, my symptoms have worsened and I live with chronic pain and fatigue that have affected every aspect of my life. I have not received the more aggressive oral or IV treatments. I rely on physical therapy, massage, my husband and my faith to try and manage my pain.
Besides the daily pain and the affect it has had on my ability to work, socialize and take care of my family, the hardest part of this ordeal is the fact that it is so hard to receive quality evaluations and treatments for Lyme disease. Many Lyme-literate doctors are shut down by medical boards, and those who are not are often out-of-state and hard to get an appointment with. Most of them do not take insurance, so treatments are very expensive. I am thankful for organizations like the Georgia Lyme Association who work tirelessly to help people like me get back on our feet and receive accessible and effective Lyme treatments. It is time for the medical community to open their minds and their ears to the epidemic called Lyme that is destroying so many lives. Only then can people like me be treated.
Meet Georgias Kevin Wall - loving husband and father - a true family man. Kevin's story illustrates what happens when area disease statistics don't accurately reflect what is occurring. Medical professionals see the low statistics, believe Lyme disease to be rare, and misdiagnose patients. This can lead to permanent damage and turn a potentially curable illness into an ongoing problem.
I was treated by my primary care doctor. I had been sick for a year before treatment. I ended up in the emergency room, was having motor skill and speech problems, blurred vision, light and sound problems, heart palpitations, swollen glands, dizziness, and panic attacks. I figured it out on my own...Google.
I remembered pulling a tick off my arm in my hot tub after working on my property (2 hours east of Atlanta) for a few days. I even remembered leaving work early the next day because I thought I was coming down with the flu. Then I developed a rash as big as a softball on my arm. It had a clear circle in the middle with a red dot exactly where I pulled off the tick. It was rosy red - didn't hurt, didn't itch- had a couple of rings on the outer edge. I felt fine, wore long sleeve shirts to cover it up, even showed it to my wife because I thought it was strange.
When I read about Lyme, I was SURE of what I had. When I went to my doctor, I was told I was probably wrong. I was given an ELISA that came back negative; I demanded a Western Blot and, after a heated argument, was given one. IT came back positive. I was given a four week supply of doxycycline, 100mg, one per day. My appointment with XXXXX (specialist) was two weeks after my prescription ran out. I had to beg for the other two weeks worth, and was told that would be it. My symptoms had improved, but very little.
Dr. XXXXX at Emory saw my test results - 5 bands out of 5. It was a Western Blot done by Lab Corp. I told him about my classic bull's eye rash exactly where the tick bit me. I told him of my 20 plus symptoms. He told me the rash did not mean that I definitely had Lyme. He said the test was probably a false positive, and that they were unreliable. He showed me the CDC statistics in the state of Georgia and told me I had a better chance at winning the lottery. He said that if it was Lyme, the 6 weeks of 100mg doxy per day would have cured me. He said that my symptoms would go away, and in a year I would be laughing about this.
When I made the appointment his secretary told me he only took patients with positive test results. This is strange because he told me 97 percent of the people he sees do not have Lyme. He knew about my rash, my test results, and my symptoms before I ever went to see him, and decided I didnt have Lyme simply from CDC stats. He ran no tests, and told me I really didnt need to see him anymore. It was a huge waste of my time & money. My wife was in the room with me & heard all of this.
After Dr. XXXX, I spent a year untreated only to become so sick I couldn't function. I slept as much as 18 hours a day, couldn't drive, and had panic attacks, even in my sleep. I developed tremors and struggled just to eat. I was told by my Dr. to quit obsessing about Lyme. I was sent to a neurologist and given MRI's, spinal tap, tested for MS, Parkinsons, ALS, etc...BY this time, I was on blood pressure meds and anxiety meds.
I went out of state and saw a LLMD (Lyme-literate medical doctor), paid out of pocket. I am not 100 percent, but a thousand times better.
I work out and I take Mixed martial arts. I spend 40 minutes a day in a sauna, 40 minutes a day cardio, lift weights and take MMA four days a week. I drink lots of water and eat healthy. I hurt after fighting in class, but not as bad as I do when I don't stay active. The MMA helps me with my stiffness and joint pain. People must think it's crazy for a 44-year-old to be out there fighting, but I have been fighting Lyme for three years, and this is easier. I was a football coach, a wrestling coach, a construction worker-I ran crews from the age of 18 - I was a man's man. I felt like I was a shell of the man I use to be.
I am willing to talk to whoever you want. If it can help others, I will do it. As far as myself, I don't care what people think...I KNOW!!!! I LIVED IT. The Lyme community has been correct on everything that has happened...the doctors have not. I know who is correct. I read story after story and all you have to do is insert name. Where is the common sense? Lyme does not know state lines. It has been around for decades...animals migrate, people move with pets... there are different strains in different parts of the world, but not in Georgia? Give me a break! The reason it's not in Georgia is the doctors don't know what it is. They have been misinformed. They also don't know how to treat it.
(Editors note: False positive Lyme tests are actually not very common. Unbelievably, Kevin reports his case, meeting all CDC reporting criteria, was not reported to the Georgia Division of Public Health.
The CDC confirmed 27 Georgia counties with native Lyme disease cases in 1989. Our state had 715 CDC-reported LD cases that year. There is voluminous scientific evidence (see ourLyme in SE page) documenting Borrelia burgdorferi in thousands of regional animal and tick specimens.
There is dire need for change in our state, for when faulty statistics outweigh patient history, clinical signs and symptoms, and even compatible test results - and patients cannot get treatment for so serious a disease - something is truly wrong.)
No End in Sight-by Linda Pennington
In March 1999, my husband Marion was diagnosed by a neurologist with Lyme disease. He referred us to an infectious disease doctor in Augusta, who gave him a 30-day regimen of Doxycycline. Marion got better for a few weeks, but regressed quickly and was prescribed another round of the same with the same results. On the third visit to the doctor, he said that Marion should be well and that he could do nothing else for him. At that point, I began to read all that was available about Lyme disease. My discovery was that he was in third-stage Lyme disease and needed some immediate intervention as he was in constant pain and was not sleeping much at all. He had also taken an early retirement because he was having a difficult time functioning at his job.
Simultaneously I went through our medical records and discovered that his first symptoms had appeared in the fall of 1996, when he went to the doctor with several large targets on his legs; he was diagnosed with ringworm, but it did not respond to treatment. That same fall, he was diagnosed with flu, but the symptoms subsided in a few days, unlike the real flu. The following year, he suffered from time to time with a number of symptoms: excruciating headaches, heart palpitations so severe that I could hear his heart thump lying next to him, neck stiffness, recurring arthritic pain in his knees and wrists, bulging blood vessels when he was at rest, extreme sweats, even in very cool surroundings, chills and uncontrollable shaking followed by all-over joint pain, insomnia, malaise and drowsiness during the day, mood swings, and depression. Several more trips to the doctor were to no avail. When neuropathies in his feet and legs got so severe he could hardly sleep at all and had to give up his daily walks with the dog, he went to a surgeon who removed a large cyst near his spine, thinking it was causing the pain. When the pain persisted, the surgeon referred him to the neurologist who made the diagnosis.
As I did my research, Marion also began looking for another doctor; he found and joined the Lyme Disease Association in Lyme, Connecticut, which sent him the name of some Lyme-literate doctors in Georgia. We chose a doctor from the list who had treated me for a blood-borne staph infection at an earlier time. She put him on IV Rocephin for 31 days; he began to get some relief from some of his symptoms, but had to take oral antibiotics for several more years, sometimes for 90 days and sometimes for just 30 days. Each time he went off the antibiotics, he would get worse. The hardest symptom to cope with was the neuropathies, as they never abated. He was prescribed several medications, including Neurontin and more recently Lyrica, but none of them touched the pain in his toes. The doctor started him on Lidoderm patches when they were so new that the local pharmacies did not carry them but had to order them for him. He still uses them today along with a pain medication to get temporary relief.
It had been 10 years since Marion was diagnosed with Lyme disease, and we have seen most of his symptoms disappear, but those that remain are, at times, very acute and quite devastating. He continued to have targets on a regular basis, preceded by the overall body aches and arthritic pain that is labeled Lyme arthritis. The targets have almost subsided; he has had only one in the past year. He does still get the Lyme arthritis, especially if he has been very active, but it usually abates in a matter of hours, whereas it used to last for several days. In our search to find temporary relief without another hydrocodone tablet, he has found relief with two OTC Percogesic, or its generic store brand. We continue to research for another cure for the neuropathies, as the Lidoderm can only be worn for 12-hours at the time, and it also causes some nausea for him. He had a stroke two years ago, from which he has fully recovered, but we are convinced that it was the result of his long battle with Lyme disease.
We are sometimes amazed when we hear someone say, Oh, Lyme disease, it just takes 30 days of antibiotic to get rid of it. Borrelia burgdorferi, that insidious germ that causes Lyme is easy to get rid of if the diagnosis is made in the first month; however, when it lingers in the body undetected for almost three years, as it did in Marion, it can do irreparable damage or even cause death. The need to know about this illness is critical for every person, as no one is immune.
Prior to getting Lyme disease, I was a rehabilitation RN and traveled across southeast Georgia. My husband and I were runners and I could easily run five mile races. We built our house in Hinesville on what was previously part of a deer hunting range. I enjoyed working with my flowers, in our garden and gathering wild flowers in the woods.
On April 25, 1988 I was 58 years old. I went to the doctor with a bull's eye rash on the back side of my right knee. It was hot to touch and had a red ring around it with a central pallor. I also had joint pain, which was unusual for me. I am a nurse but was unfamiliar with Lyme at that time. I did not see a tick. I was given prednisone.
By early May, the doctor drew blood for testing, because I now had a rash behind the knee and also the elbows. I continued on prednisone but soon returned to the doctor with flu- like symptoms with fever and chills, an upper respiratory tract infection and pain in the right temple with nasal congestion and cough. I was given the antibiotic, Cipro and a decongestant.
I saw the doctor again because of abrupt onset of severe mid back pain on June 22. X-rays showed a tender point at T-ll. In October, I had laser surgery for a hole in the retina. Tests showed choreoretinitis and uveitis. I saw the retinal specialist regularly until he retired.
I continued to have bizarre symptoms; muscle spasms, periods of dizziness, etc. I consulted an orthopedic specialist in July, 1990, who said I had multiple problems including thoracic pain, lumbar spine pain, pain radiation into both legs and in the right knee and both hands. He noted it seemed to be some kind of systemic thing. Tests appeared normal and I was placed on Feldene for possible arthritic flare.
The strange symptoms worsened. On September 14, 1990 I was hospitalized for upper abdominal pain and projectile vomiting. My abdominal ultrasound was mostly unremarkable. Next,a chest x-ray showed pulmonary emphysema and chronic granulomatous changes (note: I have never had emphysema nor smoked). This was followed by an acute urinary infection.
By mid-September, my daughter, a nurse in Atlanta, convinced me to fly there to see a doctor for my numerous, bizarre symptoms. While on the airplane, I began to feel numbness on my right side and I could not pick up my left foot or use my left hand. I began to have chest pain and had difficulty breathing. I was met in Atlanta by an ambulance and was taken to the coronary care unit at Northside Hospital. I had atrialfib and sinus tach and borderline ekg while in the ambulance. In the hospital the Dr. did a stress ekg for four beat runs of v-tach and intermittent chest pains. The symptoms abated and I was sent to a pain clinic. I was diagnosed with costochondritis, fibrositis, chronic low back and cervical pain. The doctor thought I had depression, also. He did trigger point injections with steroids and I was discharged.
Since I was a nurse, I knew I was really sick and needed help. I was driving at work on my job one day and did not know where I was, where I was going and what I was doing there. When I came out of it, I realized I could no longer do my job. I was becoming desperate.
By this time I began hearing about Lyme disease. I went to a rheumatologist in Savannah. His x-rays showed degenerative changes in the cervical spine, right knee and hands. I asked him to do a Lyme test. The Elisa was positive at 1:47, Western Blot neg, and an elevated ANA. I was told that the Elisa must be a false positive; he thought I had fibromyalgia.
I began to have severe occipital headaches and became highly sensitive to light. All symptoms were getting worse, I couldnt think clearly and had trouble making my words come out right. I began transposing numbers.
Miraculously, in 1991 I contacted a nurse in Augusta who could no longer work due to the same kind of problems. She made an appointment with a doctor in New Jersey, who was keeping up with the Lyme research. I flew there and was admitted to the hospital and diagnosed with Lyme disease. A PICC line was inserted and after a few days I flew home to continue with IV Claforin for a month. After that I was on oral antibiotics for some time.
I did quite well until the next year when I became extremely dizzy and disoriented. I was sent to a neurologist who said it was from the Lyme. I was treated with Rocephin IV for 5 weeks. I started feeling like my old self and was discharged. I was doing well.
I was in remission for several years. In 1996 I had intraductal breast cancer and had a left mastectomy and removal of five lymph nodes. In January, 1999 I had a flu shot. All the old symptoms came back again and I felt I was back to square one.
Dr. Kenneth Gresen in Hinesville became interested in Lyme. He began to test people in the community that had similar symptoms and began treating them along with me. The first Lyme test he ran was negative. After he started the antibiotics, I came up with an Igg. 23, 41 and 66KD on Western Blotbut the Elisa was negative and the PCR was, too. My ekg showed left bundle branch block and a minor vconduction defect of unknown origin. The doctor treated me with a regimen of different antibiotics ranging from doxycline, ceftin to flagyl for the cystic lyme and ended my treatment with bicillin IM injections. (Sadly, Dr. Gresen later died from cancer.)
I was able to return to work the first time in ten years! I worked for a couple of years with Hospice before I could not hold up to the physical demands of the job.
In 2002, I began having knee pain. My Lyme test was negative, but my sed rate was 47 and ANA 1:32. By 2003 my knee pain became severe. I had double knee replacements because of complete destruction of the knee cartilage. I also had double cataract surgery that year.
I had an enlarged lump in my left side of the neck in 2004. A salivary gland was removed that was benign but filled with old infection type material.
I was referred to an Infectious Disease specialist the following year. She said by then Lyme was chronic and nothing else could be done. Since then I have had chronic shoulder pain, arthritis, fatigue, etc. but I get by on Darvacet for pain and Doxepin for sleep to alleviate leg and foot pain.
I am so thankful and blessed to have had a few wonderful doctors who believed in me and took a chance on me by treating me aggressively with antibiotics. I do believe for chronic pain the flagyl, ceftin and bicillin injections brought me back to where I am now. But I believe the IV antibiotics saved my life.
I try to spread the word about Lyme being in Georgia.
In the words of Mahatmas Gandhi, Be the change you wish to see in the world. That is exactly what I wish to do by sharing the story of my battle with Lyme disease.
During high school, I achieved a 4.3 grade point average, was the captain of the varsity cheerleading squad, played on the soccer team, and was an active member of the math team, Beta Club, National Honor Society, and National Spanish Honor Society. During my senior year, I was elected Co-president of the Student Government Association, and Homecoming Queen. Overall, I was a very involved and well-rounded student. However, I am no longer the involved, straight A student I once was.
In the fall of 2005, the beginning of my senior year of high school, I developed extreme fatigue, swollen glands, and a sore throat. I was diagnosed with mononucleosis. However, I did not test positive for the illness. Over the course of my senior year, I was told that my poor health was due to mono flare ups. Not knowing what I know now, I had faith that my doctors were correct in their diagnosis, and I simply waited for the day to come when I would no longer be ill.
That day has still yet to come, and four years of my life have come and gone. My three years thus far in college have not been filled with carefree adventures and the best times of my life of which I had always been told would come in this period of my life.
Along with the persistent mono-like symptoms, new ones seemed to develop almost weekly. Before long, I was experiencing extreme joint pain, debilitating headaches, problems with cognition and cardiac issues. Every doctor I visited stated that all of my tests results were normal and that my problem was simply psychosomatic. Before long, my family and I began to ask questions and start researching my illness on our own. Within this time, I tested positive for Lyme disease twice but was told these were false positives and that I did not have the disease. In light of the research we had done, and numerous stories mimicking mine almost perfectly, I realized that I most likely DID have Lyme disease. The problem simply existed in finding someone to take me and my illness seriously.
That day did come in March of 2008 when my family and I decided to travel out of state and out of our insurance network to a Lyme literate doctor, or LLMD. Instead of a spring break spent with my friends on vacation, I was being diagnosed with Lyme and beginning treatment.
However, my battle with the disease would not be over as quickly as I had envisioned that spring break. It is now over a year later, and I am still experiencing symptoms, both old and new. Due to complications, I was forced to discontinue treatment for a period of months, and eventually was referred to another LLMD who has now started me on an intravenous regimen.
Now, I am not only seen as sick by those whom I deem important and trustworthy enough, but by every individual who sees my PICC line cover and asks What did you do to your arm? Although this can be irritating and isolating at times, it has allowed me to inform so many more individuals about the perils of this disease, its diagnosis, and its treatment.
Throughout my battle with Lyme disease, I have experienced some of the lowest moments of my life. Although I am only twenty one years old, I believe whole-heartedly that I will not face anything more difficult in my future. The past four years have been filled with many moments of self doubt and hopelessness. At times, I felt that I could no longer go on, and it was only through the support of my family that I am alive today and able to share my story.
Along with the extreme emotional toll that my battle has taken on myself and my family, the cost of treatment has been financially high as well. Due to the debate over whether Lyme can be a chronic illness, my treatment has not been covered by my familys insurance. My family has spent well over $15,000 in the past three months on my current IV treatment alone. It is a shame that these types of financial and emotional hardships must be endured by individuals affected by this illness.
By CDC criteria, it is reported that 20,000 individuals are diagnosed with Lyme disease every year. However, this government funded institution states that this only represents ten percent of the total number of cases. This means that in the United States, over 200,000 individuals are infected with Lyme each year. This statistic is HIGHER THAN THE NUMBER OF NEW INFECTIONS OF HIV EVERY YEAR. However, few people, especially in the south, know about this illness. In sharing my story, I hope to give a voice, as well as a sense of hope, to these individuals who are infected with the disease but may not realize it or are having difficulty being diagnosed and treated.
Though it may seem that my experience with the illness has only been negative, I have learned so much about myself and others throughout it. I have realized how strong I can truly be, and how much I can endure. It seems that I have been shown at a young age why I exist in this world. I have also been blessed to be able to see the good in so many people who have been interested in my situation and willing to learn and help. I have also been introduced to so many caring individuals who are also suffering from Lyme and are great sources of support and motivation. Even though many years and dollars have been spent fighting Lyme disease, I would not have had it any other way. This is something that I was meant to experience, and a way for me to truly make an impact on the world.
I got the Good News in June of this year...I say good news because now I can stop searching...searching for a reason for all the progressing symptoms I have. Now I can concentrate on finding a way to getting well.
I believe I have had this terrible disease about 12 years, my symptoms started with flu like muscle aches and severe brain fog.this would come and go, it then became joint aches especially in my knees. I asked to be tested for Lyme by my GP about 10 years ago, he did so reluctantly and the Elisa test came back negative. His reply was see I told you that you dont have lyme. He wanted to prescribe an anti anxiety pill, I refused.
Over the next several years I have been to various doctors, not one suggested Lyme and my symptoms kept getting worse. I even visited a psychiatrist who tried me on Paxil but I couldnt tolerate the side effects and it didnt help.
The symptoms kept changing and increasing, I now have severe head tremors, muscle weakness and muscle pain in addition to the joint pain (at times so severe I cant get out of bed), my memory is shot, I have severe irritability at times, am unable to concentrate, have short attention span, chemical sensitivity and severe fatigue.
In 2008 I got an appointment with an endocrinologist as I had developed diabetes and after several tests (none for lyme) I was told I had thyroid problems, started on synthetic thyroid, adrenal problems, some sort of auto immune disease (but he said the lab numbers werent quite high enough to be Lupus) and an inflammatory disease and he recommended I see a rheumatologist for my aches and pains.
Still not satisfied with the answers, in April 2009, I sought out a practice in Jacksonville, Fl that has an MD and a ND, thinking the holistic approach might give me some answers. The MD ordered some blood tests including heavy metal testing and thought I should be tested for Lyme..I told her I already tested 10 years ago and it was negativeshe still thought I should be tested as there were some other tests available now and I thank God she did. The Western Blot IgG came back positive for chronic Lymeafter much reading and researching about Lyme since then, it all made sense. The MD in Jacksonville recommended I find a Lyme doctor but I have had no success in finding one locally.
I am frustrated with the medical community and have chosen to treat myself. I have joined several Lyme groups to get informed and I am using alternative methods such as MMS, teasel and other herbs and using a rife coil machine. Yes, there is Lyme in Georgia, I pulled many ticks off myself on my farm here in South East Georgia no bull's eye rash though. Now I am on the long journey back to health.
agreed to share their
stories with the hopes
that they will help
to create public
dire need for
more research funding
to study Lyme and
across the Southeast.
thank them for
their efforts to spread
the word about
with Lyme and
don't recall seeing the
tick that bit
(Yes, they can be as small as the period at the end of the above sentence!)
Lyme testing is
There is currently
that can rule out Lyme,
nor is there one
that can tell whether a
person has been cured
by the treatment.
Many other such studies, including a very disturbing one from Johns Hopkins, indicate that testing methods miss many positive Lyme cases.
(See Lymeinfo.net Seronegative file for numerous research studies proving this.)
See Lymeinfo.net - Persistence file for medical research summary containing dozens of study abstracts proving Lyme disease may become a chronic or persistent infection.
We thank you...
and our children do, too!