My Lyme Disease Story
Fourteen Years and Ticking
My name is Laura, and I have Lyme disease. I am going to share the story of my life with Lyme disease with you. It is my hope that by writing this all down, I can help other people. Maybe you are sick, or you are trying to help someone who is. Whatever your reason for searching, and finding me here, I hope to help you find some answers. When I first looked online for information about this disease, there was nothing but a big jumble of confusion. Thankfully, times have changed, and now there is a wealth of information available about tick borne diseases. If I can help in some small way, even if it is just providing a link to another site, I will have served my purpose. It is rather long, so you may wish to just print this out; you also have my permission to share this story with others. Thank you for coming, and healing thoughts to you all. This is my story.
Before I got Lyme, I was a mountain climber, athlete, kayaker, woods woman, environmentalist & full of energy! I had just graduated college with my Bachelor's degree in environmental science. I had a wonderful career path set out for me, full of endless opportunities in ecology, wetlands, forest ecology, microbiology, soil science, and environmental action. Every day since I learned how to walk, I have been outside, in the woods, working outdoors, playing outdoors, and every chance I got, I sleeping outdoors. Nature and wilderness are my passion, and they always will be. My yard is full of deer, and there are at least 50 deer for every human where I live, an endemic area. As a child, I lived for the woods, building tree forts, camping outside, wandering for hours in the woods, a total tomboy. I was the only kid in my class to get the award for perfect attendance, and was never sick a day in my life. I camped out under the stars more nights than I slept in a bed, and loved every minute of it. I bushwhacked up mountain trails, always seeking the pass less taken. I worked for the Conservation Corps in the summer, blazing trails all day long, working in thick, dense wooded areas. Ticks were crawling all over us constantly. At lunchtime, we would take off our work gloves, and flick them off our arms. When we got home at night, we would then take the tweezers, and pull them out of our bodies, by the dozens. Back then, what was Lyme disease?
Now I know! It is a deadly disease lurking in our backyards. It is spreading all over the USA and the rest of the world. Birds, mice, deer, pets, they are all carriers. Even once Lyme disease was recognized, it was common knowledge that it was "easily treated with a couple weeks of antibiotics" so, what is the big risk with that? Then I said, "great, I can use preventive care!" Ideally, we would have had all our skin covered with thick fabric to avoid being bitten. Go ahead, you try to wear thick white cotton in the 90 degree heat and humidity of a NY July day, sweating in the sun, chopping logs apart to make trail linings and skree walls. Oh, and I cant forget to mention, the fact that I am anaphylactically allergic to bug spray. After using DEET and Deep Woods OFF, Cutters all that stuff, all the time, all summer long, I started getting skin reactions to the stuff. One afternoon, I swelled up like a hot air balloon, with hives all over my body from the bug spray. Now if it even comes near me the reaction starts with the itchy hives. So much for prevention.
So, what was a nature-loving teenager to do? Should I spend all summer indoors? Forget that idea! The outdoors is my life! So, now for the recipe for disaster. Take one healthy human, place in outdoors, on grass, or in the woods, expose skin, bite skin daily, suck on skin, exchange fluids, become host for parasitic organism, let bacteria replicate, slowly simmer for 10 years, add steroids to wreck immune system, bite again, add secondary infections, viruses, parasites, and piroplasms, enter babesiosis, the second tick-borne illness to become an unwelcome guest in Laura. Bite again, receive inadequate treatment, add bartonella, the fourth tick infection I have. Add a camping trip, another summer of trail work, and a few dozen more tick bites, bring no bug spray, add in some Ehrlichiosis, and a few more strains of Lyme, bring to a rolling boil, try to survive as a host organism! So when people ask me how I got infected, I tell them I have been bitten over a hundred times. Do you people ever go outside and enjoy nature? Daily exposure + endemic area + bug spray allergy + time outdoors= infection It adds up doesn't it?
Early signs of Lyme disease can include flu-like symptoms (headache, fever, muscle aches, joint pain and fatigue) and a possibly a Lyme rash. Most symptoms show up days or weeks and occasionally months following infection. The Lyme rash is referred to as erythema migrans or EM. Most doctors will look at a red bump and call it a spider bite. It is important to remember that the rash may not show up at all, or it may appear too light in color to be noticed. The rash can be shaped like a bulls-eye, it can be smooth or bumpy, it may or may not feel warm, and there can be multiple rashes that can appear at the site of the tick bite or elsewhere on the body. I had rashes, 5 EMs, bulls-eyes. The doctors gave me 10 days of doxycycline, told me I was cured, over and over.
I started to struggle with fatigue in my early teens. I needed so much sleep, and I felt tired all day long. All I wanted to do was sleep. My immune system must have been supercharged because I was an athlete. I used to run 3 miles in the morning and train for basketball, volleyball and softball. I rode my mountain bike; rock climbed, climbed mountains and kayaked every day. Suddenly I could not do it anymore, and I was too tired.It took me about 3 months before my tiredness became severe enough to see a doctor. They told me I had mononucleosis, even though my tests were all negative. My Lyme disease test was positive, and they gave me 2 weeks of doxycycline. I took all the pills even though it really hurt my stomach. I felt better for about 2 months and then I crashed again. My system was fighting off the Lyme even then, and it simmered there like that for the next 8 years.
After another couple doctors, I was told I had chronic fatigue syndrome (CFS), and there was no cure. Okay, I now understood what I had, and the years passed by, overwhelming fatigue, infection...brewing. If I had only known what was about to happen. Once infection becomes established, symptoms of Lyme disease may include; pain in muscles and joints, fatigue, swollen glands, fever, upset stomach, headache, forgetfulness, sleep disorders, depression, and sensitivity to light and sound. One of my re-infections manifested as a sinus infection. I had no idea it was Lyme, and when I took zithromax, I got a Herxheimer reaction. The medical community is often perplexed by the highly individual and complex nature of Lyme disease. Some people experience Lyme disease as a minor illness that appears to be easily treated with antibiotic therapy without any long-lasting complications, others are not as fortunate.
What happened to me? My Lyme disease went on for 10 years undetected, undiagnosed and untreated. The bacteria spread deep into my brain and all over my central nervous system, my heart and other organs, tendons and joints. This late-stage infection can result in a wide variety of physical, emotional, and mental or cognitive symptoms. I would rather take my chances with cancer than have this disease, just as I would gladly have an arm or leg amputated if I could be cured.Its is important to remember that every person is different. Some people may get a rash, some may not. Some people may get joint pain, some may not. Some people may get a fever, some may not. There are so many different strains of Lyme disease, and each person may have one, or many different strains. Some people may get just Lyme disease. Some people will get Lyme + babesia. Some people just come down with Ehrlichia. Some people will be unlucky enough to have 4 or more infections at one time (like me). Everyone is different and everyone should be treated as an individual. Many times a person may not remember being bit by a tick. Since it is a relatively new disease discovery, scientists and doctors still have no idea what other insects carry these diseases, scientific research is lacking, and anything is possible.
Another important point to make is that you may not get sick right away. Everyone has a different immune system. Some people may get bit in June, and feel perfectly fine until a sinus infection in October, and then they are tired all the time. Some people may come down with a fever and chills the day of the tick bite, some may not. It is very easy to forget being bitten, and to rule it out as time goes by. Sometimes our bodies are strong enough to not show symptoms, again, everyone is different. When you are bitten, you should be treated the same day. The biggest mistake is the "wait and see" approach. For any known tick bite, you must be treated aggressively with antibiotics promptly. You should also take a picture of any rash you might get. If you are treated promptly, you may never get a rash. You may also feel better right away, and then have symptoms creep back slowly months to years later because the disease was not completely killed by the antibiotics.
Borrelia Burgdorferi, the Lyme disease germ, is one tough bug to kill. You also must be checked for co-infections. One tick bite can bring multiple infections. If you are still feeling sick after a good strong dose of antibiotics, you either did not kill the bug completely; you have one or more co-infections, or both. I cannot stress enough the importance of being tested for co-infections, and working with a doctor who treats Lyme disease as his/her main practice. We call these doctors LLMD's, which stands for Lyme literate medical doctor. I would say based on experience, that 95% of primary care physicians and family doctors have no idea what they are doing concerning Lyme disease and co-infections. They will probably look at you like you are crazy, misdiagnose and under treat you, not treat you at all, or try to send you to a shrink. Lyme disease is everywhere! It is very serious and it is spreading all over the world. It is really difficult to find a good Lyme disease treating doctor if you are located out in the middle of nowhere, or off the east coast of the United States. There are a few LLMD's out there, but it's not easy to find one. If you have a difficult case, and you are far away from NY, CT, and PA, consider flying in to see one of the best doctors, nothing is more important than your health.
If you go untreated for weeks, months or years, the late-stage list of symptoms is long and confusing. Symptoms include arthritis, heart abnormalities, Bell's palsy (paralysis of one or both sides of the face) and severe cognitive or mental dysfunction including memory loss, confusion, and psychiatric problems. Lyme disease is often referred to as the "great pretender" because the symptoms of Lyme disease can so closely mimic the symptoms of other diseases. Lyme patients have been misdiagnosed with chronic fatigue syndrome CFS/CFIDS, fibromyalgia, lupus, multiple sclerosis (MS), rheumatoid arthritis (RA), depression, Alzheimer's disease, and Lou Gehrig's disease (ALS). I was misdiagnosed with all of these but Alzheimer's. My symptoms included: low energy, poor stamina, sore throat, unexplained menstrual irregularity, upset stomach, abdominal pain, chest pain, rib soreness, shortness of breath, cough, heart palpitations, pulse skips, heart murmur, joint pain, joint swelling, stiffness of the joints all over my body, muscle pain and cramping, twitching of the face or other muscles, neck pinches and cracks, neck stiffness, neck pain, tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity, facial paralysis, (Bell's palsy), double, blurry, increased floaters, light sensitivity, buzzing, ringing, ear pain, sound sensitivity, increased motion sickness, vertigo, major facial flushing and bizarre skin rashes, poor balance, lightheadedness, wooziness, panic attacks, anxiety, tremors, confusion, difficulty in thinking, difficulty with concentration, forgetfulness, poor short term memory, poor attention, disorientation, getting lost, going to wrong places, difficulty with speech or writing, mood swings, irritability, depression, disturbed sleep, too much sleep, too little sleep, the overwhelming need to sleep for 4 hours every afternoon, and a complete intolerance to alcohol. I believe I had every symptom you can have with the exception of testicular pain and impotence.
Ironically enough, when I finally did see a shrink, it was he who thought I was really sick, so it went in circles for years. I was the victim of verbal abuse my 3 different doctors (who were all conspiring against me) back, to back to back. The infectious disease doctor, rheumatologist, and neurologist were all probably getting kickbacks from my insurance company to not order tests, or diagnose Lyme. Insurance companies do not want to have to pay for the extremely expensive long-term treatment for Lyme disease, so they pay these doctors to dent that it exists. An immunologist told me I had Epstein- barr virus and that I had less then 2 years to live. A gastroenterologist in NY told me I was suffering from hypochondria. An infectious disease doctor in NY told me that all cases of Lyme disease were easily cured in 3 weeks. Since I had the three3 weeks and I was cured, and to try some prozac. Infectious disease ducks also told me that babesia did not exist, and that if I had Ehrlichia my organs would be failing by now. Infectious disease doctors I have found to be among the most heartless, cruel, and stupid of all doctors.
Doctors who know nothing about Lyme disease are referred to by the majority of the Lyme community as "ducks." To say I went through a lot is not telling the whole story. I went through hell, and enough of it for a lifetime. I was so sick and desperate, I would sit there in the waiting room dripping sweat, 100 fever, my left side numb, my face drooping, my feet purple, having slept 16 hours and woken up tired, with no appetite, massive anxiety, nausea and facial flushing that made me look like a homeless drunk, and I would be dismissed as perfectly healthy by the doctors. They would go on about me finding a chronic fatigue support group and that I needed a shrink.
What everyone needs to realize is that chronic fatigue, fibromyalgia, and arthritis are not diseases by themselves. Of course, they are real, but they are symptoms, not diseases. If you go to the doctor, and complain of being tired all the time, for 6 months or more, you are probably going to be diagnosed with chronic fatigue. You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense! You need to find out the cause! Lyme disease, and the bacteria b.burgdorferi are the cause of the chronic fatigue. People join chronic fatigue support groups, they go on disability, they tell their family "I know what's wrong with me now, and I have chronic fatigue." I still find it amazing just how many people get sucked into this giant conspiracy and line of thought. None of it makes any sense, yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with an undiagnosed and untreated infection.
Many thousands of people believe they have fibromyalgia, chronic fatigue syndrome, depression, multiple sclerosis and more, and still they have no idea what the cause is. Wake up people and think with your brains! Normal, healthy people do not just suddenly come down with MS, or are exhausted all the time for no reason, there is always a cause. Do not buy into the word syndrome either; it is just a word for a collection of symptoms for which the doctors label a syndrome because they have no idea what is wrong with you. The same thing is true for treatment of diseases. People seek out a cure, and what they get is not a cure, but medication to treat the symptoms. An example of this in Lyme disease is anti-inflammatory drugs, NSAIDS, or steroids prescribed to treat painful joints. The medications will work on the symptom, the pain, but the cause of the pain goes untreated. The smart treatment would be antibiotics, which directly kill the cause, plus supportive prescriptions to treat the symptoms and make the patient more comfortable. Therefore, in the previous example, the patient benefits from treatment aimed at the cure, plus they get symptom relief. Seek the cause people, always seek the cause.
In my story, I set out for a diagnosis, and treatment for my cause. I was mis-diagnosed as a crazy person with chronic fatigue. I heard the previous responses from so many different doctors and medical staff that I have lost count of them all. I was told repeatedly that I was crazy, in perfect health, depressed, have chronic fatigue and that I could not possibly still have Lyme disease. It is all one huge Lyme conspiracy. Insurance companies do not want to pay for long-term IV antibiotics that can coast upwards of $3400 per week, so they pay these dirty doctors to misdiagnose and under treat possible Lyme patients, diagnosing them instead with chronic fatigue or similar made up disorder so they do not have to pay anything. I have been severely wronged for 10 years and too sick and poor to do much about it. (Please read my Lymelinks for more information about the New York OPMC and the Lyme conspiracy.)
As the months dragged into years, I kept getting sicker. A few doctors took blood, and some interesting things were found. I tested positive for rheumatoid arthritis, HHV-6 and Epstein-barr virus. I was told I had a stealth virus infection that I got from a contaminated childhood polio vaccine. I took ganciclovir and other anti-virals, all of which did nothing. The MRI of my brain showed white matter lesions on my frontal lobe, and I was told I have MS. My natural killer cell level and function were low; I had a result of 3, and a function of 88%. My adrenal glands were shot and not producing cortisol, and I was diagnosed with Addison's disease. My red blood cells were low, my platelets low, and my immune system was weak. I was put on prednisone for almost 3 years for my bad adrenals. Now I know that was a huge mistake, and is one of the worst things a person with Lyme Disease can take.
I tried many alternative treatments, diets, and supplements. I had all my mercury fillings replaced, and I did the protocol's chelation. I even traveled to the Dominican Republic to a special chronic disease clinic seeking help. There I tried treatments from Europe. I was treated with anti-viral drugs combined with a supposed "targeting agent" called hyaluronic acid (HA). I had to pay $12,000 to receive the HA, since it was illegal to use in the United States. I later found out that patients of this doctor were getting it "sneaked" into their nutrient and antibiotic IV treatments without having been to the Dominican Republic. My treatment also included hydrogen peroxide IV's, ozone, UV-B photo ox therapy, IV vitamin c drips upwards of 75 grams, multi-mineral and vitamin IV's, detox therapy, and poly-MVA that was being used for cancer. I also did a German vaccine at the clinic. They took my blood and sent it to Germany, separated out all the bed stuff in my blood, and made a vaccine out of it that I would later inject to supposedly cure me. I know now that most of these clinics are just big money scams, preying on sick people with their wallets open. Be careful!
While I was seeking help in the Dominican, I came down with a life threatening bacterial pneumonia. My throat closed up and I was rushed to the ER in that awful city of Santo Domingo third world medicine nightmare! Nobody spoke English, now did they have any idea what was wrong with me or all the different chemicals and treatments that I was taking. I was on a breathing machine, and was out of it until I woke up in the clinic with IV's in both arms, a 105 fever, shaking, sweating, and could not talk. It was scary, and even though I was 24, I wanted my Mommy! The doctors at the hospital gave me IV antibiotics for the pneumonia. I was very weak, and I had no idea what was happening to me when I got worse upon the addition of antibiotics. Now we know that was the first big herx of the previous untreated Lyme 10 years of hell and suffering. The ducks in the Dominican waited until I could get on a plane, and I flew back to New York so my parents could take care of me. I was supposed to fly back to home cured, and have a happy life, but that did not happen.
Strangely, after a month in NY, I felt a little better. I know now it was because some of my Lyme was killed off by the pneumonia treatment, which were IV antibiotics. At the time, I thought it was the IV vitamin c that was making me feel better. I got ready to fly back home (Colorado), but that never happened. The time finally came when I could no longer work or take care of myself, and I was confined to bed. I truly began to believe that I was not going to make it. My symptoms had progressed to the point of complete exhaustion, where I was too weak to brush my teeth, or even sit up to drink some water. If I did get up to go to another clueless doctor, I would be dead for 3-4 days afterwards from the exertion. I spent weeks in the hospital, still untreated for Lyme. I was given painkillers, anti-inflammatory drugs, and diagnostic tests up the whazoo! Even while lying in a hospital bed, my Lyme tests which are usually false negative, ere all positive, including the ELISA, western blot, even by the obnoxiously flawed CDC criteria, my tests were positive. Still, got no treatment, and I was released and sent home with antidepressants and rheumatoid arthritis drugs, and yet another diagnosis of CFS. A very important point to make is how terrible the testing for Lyme disease is. All of the tests that are available have problems. The ELISA and western blot are notorious for yielding false negative results. Please refer to my LymeLinks page for more in depth information on this.
To make matters worse, I got bit by another tick in the summer of 1999. I found the little sucker right on the side of my armpit, it was so tiny. It was full of blood and had been there for 2-3 days. I checked myself all the time, and yet since it was so tiny, about as big as the period at the end of this sentence, I missed him. That night after I pulled off the tick and was sleeping, I woke up to a drenching sweat all over my body. My heart was pounding, and I was shaking. I thought I must have an allergy to something, or have a stomach flu.
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päivämäärä Pe Huhti 16, 2010 17:57, muokattu yhteensä 2 kertaa