WildCondor's Lyme Disease Story

Welcome! I am going to share the story of my life with chronic illness 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 my illness, 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. Thank you for visiting, and healing thoughts to you all.

Before I got bitten by ticks...and contracted Lyme disease, and babesia....evil form of malaria...I was a mountain climber, and an athlete full of energy! I had an exiting career path set out for me, full of endless opportunities in freshwater ecology and environmental action. Helping nature and animals were always my dream. My dreams motivated my life, and I had an intense passion for the outdoors. I had plenty of experience climbing mountains, but never in my wildest dreams did I imagine the mountain I would have to climb in my life. This mountain climb would be the most challenging journey I could ever imagine. The mountain climb began in my back yard.

The house I grew up in had a nature preserve behind it, home to a large deer herd. As a child, I lived for the woods, building tree forts, camping outside, and wandering for hours in the woods. I was also the only kid in my class to get the award for perfect attendance. 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 while working in thick, dense wooded areas. Ticks were always crawling all over me, and I did not think it was anything to worry about. At lunchtime, I would take off my work gloves, and flick ticks off my arms and scratch them out of my hair. When I got home at night, I would get in the shower and use tweezers to pull the ticks out by the dozens. Back then, what was Lyme disease? Why should we be afraid of ticks? No big deal, right?

Lyme disease is a horrifying and potentially deadly disease lurking in our backyards. Ticks are basically deadly assassins! Lyme disease is the fastest growing vector borne disease in this country, and eight times more common than West Nile Virus. When I was growing up in the 1990's, Lyme disease was thought to be easily treated with a couple weeks of antibiotics. I had no reason to fear ticks, so I continued doing what I love, being outdoors. I used bug spray of course, and found out I was allergic to that. Doctors used the wait and see if you get sick approach, before prescribing antibiotics.

Even if I had known about the dangers of ticks, what was I supposed to do? Should I have avoided the woods and spent my summers indoors? The outdoors was my life! Can you see how this was the prelude for a disaster? Mix a healthy human with dozens of ticks. Expose your skin and let the tick bite you daily. Go to school and work while the spirochetes replicate out of control. Add in steroids to wreck immune system, mask your symptoms, and bite again. Another year, another tick bite, this time add in co-infections babesia, Bartonella and Ehrlichiosis. Add a camping trip, another summer of trail work, a few dozen more tick bites, and bring to a rolling boil for eight years. Follow this recipe and try to survive as a host organism! People ask me all the time,"how did you get Lyme disease?" They often sit there with a puzzled look on their face when I tell them I have been bitten over a hundred times. I think to myself "do you people ever go outside and enjoy nature?"

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 (EM). Many doctors will look at a red bump and call it a spider bite. It is important to remember that the bulls-eye rash is seen is less than half of infected patients. Borrelia burgdorferi, the Lyme bacteria can infect you as soon as a tick bites you. Bacteria contained in the ticks mouthparts and saliva can spread into your bloodstream faster then previously thought. Many doctors agree that if a tick bites you, treatment should begin as soon as possible. The wait and see if you get sick approach is no longer a logical option.

I began to experience fatigue in my teens, and questioned the possibility that I might have Lyme disease. My Mom took me to the doctor who tested my blood, which came back negative. Eventually, we went back to the doctor and he prescribed 10 days worth of Doxycycline, just in case. The medication made me feel worse, and the doctor told me to stop taking it after only 3 days. I was nauseated and exhausted, my joints hurt and I had pain in my eyes. All I wanted to do was sleep. I was so weak I had to drop out of my high school basketball, volleyball and softball teams. My heart was broken because I could no longer play on the teams with my friends. My identity was slowly being taken away, piece by piece. Instead of riding my mountain bike and rock climbing on weekends, I was sleeping all day. I missed out on so many activities, dances, sports, parties and fun with friends. Eventually the doctor diagnosed me with mononucleosis and told me to go home and sleep some more.

After another couple doctors, I was told I had chronic fatigue syndrome (CFS), and there was no cure. Months turned into years, and the overwhelming fatigue continued. I struggled my way through college with a limited course load, and many incompletes. My evil form of malaria messed up my brain so I couldn't concentrate on math in any form. It would take me hours to solve an equation that used to come to me with ease. My brain felt like mush! The fatigue never went away, and all I ever did was sleep. If I had only known what the true cause was I could have began treatment.

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, but I did not know what was happening. The medical community is often perplexed by 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.

My Lyme disease went on for at least eight 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. It decided to damage my vagus nerve which of course, is a vital nerve! This late-stage infection resulted in a wide variety of physical, emotional, and mental/ cognitive symptoms. I often thought to myself that 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. It 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 plus babesia. Some people just come down with Ehrlichia. Some people will be unlucky enough to have four or more infections at one time. Everyone is different and treatment must be tailored to meet the individual's needs. 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.

As in my case, one tick bite can give you 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.

Based on my personal experience, I estimate that 90% of primary care physicians and family doctors have no idea what they are doing concerning diagnosis and treatment of tick-borne disease. 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).

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. In my case, I dragged myself though 4 years of college missing many classes and taking it slow. It was up and down for a long time and I was never quite "right."

Many Lyme patients fail to receive a conclusive diagnosis long after they first become sick. Although depression is common in any chronic illness, it is more prevalent with Lyme patients than in most other chronic illnesses. There are many causes, including a number of psychological factors. From a psychological point of view, Lyme patients are psychologically overwhelmed by the large multitude of symptoms associated with this disease. Most medical conditions primarily affect only one part of the body, or only one organ system. As a result, patients with only a few symptoms can still work, and do activities, which allow them to take a vacation from their disease. With chronic Lyme disease, there is no escape for periodic recovery.

This has been the case with me for going on for years now. In many cases, this results in a vicious cycle of disappointment, grief, chronic stress, and demoralization. I used to get so frustrated, that I wanted to swallow an entire bottle of bleach to kill the Lyme. The annoying depression is not only caused by psychological factors, but physical dysfunction can directly cause depression. Endocrine disorders such as hypothyroidism, which cause depression, are sometimes associated with Lyme disease and further strengthen the link between Lyme disease and depression.

In my case, the swelling of the lining of my brain (Lyme encephalitis) is the cause, in addition to poor adrenal function; brain lesions and vasovagal syncope, also known as neurally mediated hypotension (NMH). My Lyme disease and babesia/malaria did frightening damage to my central nervous system. Lyme encephalopathy results in the dysfunction of a number of different essential mental functions. As a result, I experienced cognitive, emotional, and neurological symptoms on a daily basis.

To better understand the link between Lyme disease and its effect on the human brain, one must understand the complexity of this disease. The spirochetes (Lyme bacteria) release poisonous neurotoxins into the brain of Lyme victims. The mixing of these toxins with brain chemicals causes the person to become unstable. Some off the symptoms of this are, extreme fatigue, crying spells, laughing fits, manic hyper episodes in which the patient is unaware of his/her actions. Normally quiet and shy reserved persons have been known to go totally whacko, and become completely and hysterically uninhibited. Panic attacks, anxiety, and severe depression result from Lyme disease. Most people (who are ignorant) say that Lyme patients are depressed because we are sick, like we are bummed out and sad because we cannot do anything anymore or have any fun. They do not realize that our brains are being attacked and making us crazy and emotionally turning us into zombies, acting drunk, or so it may seem.

One day I was driving my car while running an errand for my boss at work. I was driving along looking at the mountains when I felt a shooting pain across my chest, right below my bra line. I thought, it must be the bra, is it pinching me? It was the beginning of paralysis, and in the following weeks, I began slurring my speech, stumbling, getting lost, going out in my car and having no idea where I intended to go. I started to wonder if I had some kind of mental illness, since I was so confused in the head. I started to become increasingly forgetful. I could not remember what errands I was supposed to run. I wandered, lost track of time, got lost in my own town, and spent 4 hours in the supermarket for no reason. My eyes hurt, they ached from the inside out, my vision went blurry, I could no longer sleep with the blinds down, or the window open. The slightest spot of light in my bedroom sent a violent shock wave through my entire body. It was very painful, the only way I can explain it to a healthy person would be to compare it to not having slept in 48 hours, being punched in both eyes, while having the flu, then drinking a 1 pack of beer, getting smashed, finally going to sleep, after puking, sleeping for 4 hours (while having nightmares of dying) and then someone opens the window, the sun hits your face, and you scream, no! I went to the Emergency room unable to feel my own skin, and with tingling and numbness all over my body. They sent me home telling me I had an anxiety attack.

It took to much energy to scream. I needed to sleep with a blindfold on, and wear sunglasses at night. I also did really dumb things without realizing it, like putting my clothes in the refrigerator and a box of cereal in the dishwasher. "Lyme brain" is what that is called. A few days after the shooting pains started going down my legs and across my face, and my face sagged, I had the first of many tearing episodes while driving my car. While on my way to work one morning, my eyes suddenly went haywire and I could not see. They were super sensitive and could not take the light. I swerved and pulled over on the highway, and tried to recover. I must have allergies I thought. It was so scary, and it would not stop. Tears were streaming down my face, and I could not see. I also felt dizzy, cold sweats and exhaustion. I needed 12 hours of sleep per night, and still woke up tired. Something is really wrong with me, I thought to myself. What am I allergic to now? All I eat are organic foods. The steroids that have made me gain 30 pounds are supposed to block allergic reactions, so what the heck is going on here? I closed my eyes until I could see again, and then drove on to work, still screwed up. I ended up passing out in a dark closet at work, so exhausted I could not stand up.

Now looking back, I know that was a major sign of neurological damage, light sensitivity. My ears were next, to go, and I became a very light sleeper. When I tried to sleep, I needed to run a fan right next to my ears. The sound of the phone ringing, car horns, music, and especially car alarms and motorcycles were so loud. When you have Lyme, everything gets amplified, and its like you can feel every little sound vibrate through your whole body. Damage to your nervous system makes you ultra-sensitive, and puts your startle reflexes on overdrive. People around you will be scared, and not understand. Its best to refer them to this website, or to talk with a doctor who will help them understand. It takes a lot of time and patience to understand the complex nature of this disease. If you are a family member or friend of a loved one going through anything like this, you have to be strong for them. It is not their fault that they are sick. Be as loving, giving and sweet as you can. Let them sleep, be quiet, and take care of them. Although this is not easy to watch, you cannot give up on people you love. My loved ones had to deal with me sleeping in a walk-in closet with no windows, my cave, my little womb, and the safe haven where I could get what my body craved� sleep!

As my symptoms increased, I sought the help of over 40 doctors. I was mis-diagnosed with chronic fatigue syndrome (CFS), fibromyalgia (FMS), multiple sclerosis (MS), immune dysfunction, hypoglycemia, rheumatoid arthritis (RA), Lupus, chronic mononucleosis, and Addison's disease. Most of the doctors I saw referred me to specialists because they had no idea what was wrong with me. I have had some horrifying encounters with doctors. The worst of them all are infectious disease specialists, since the testing for Lyme disease is so poor, many of my blood tests were normal. As a result, two-thirds of the doctors I saw told me I thought I was perfectly healthy on paper, and that I should see a shrink. I can't even begin to describe the lunacy and degrading verbal bs I had to put up with from dealing with so many ignorant doctors!

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 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 make sure never to diagnose Lyme. 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. Because I took 3 weeks of treatment, they told me I was cured and to try some Prozac. A really heartless and stupid Infectious disease doctor in Colorado told me I had all the symptoms of active AIDS. 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. I have had so many nights full of panic and worry that I was dying from some mysterious deadly infection that it is a wonder I am still here.

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 ER waiting room dripping with sweat, 102 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.

You can't imagine the heartbreak all these near death experiences caused me. I was completely denied a normal life, having fun, hanging out with friends, furthering my education, working, and searching for my soul mate. I didn't have any choice, no real options. I had to fight to survive, and make difficult sacrifices because I was 100% dependent on others in order to just exist. Instead of going camping with my friends, I was sitting in waiting rooms talking to 70 year olds about body pains and losing your mind.

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 had been severely wronged for eight 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 had 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. They make you gain water weight like a hippo and there is nothing you can do.

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. I tried treatments from Europe that were "new and amazing" immunology. 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, Chinese herbs, homeopathy, 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, nor 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 an adult, 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 I know that was the first big herx of the previously untreated eight years of 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 was IV antibiotics. At the time, I thought it was the IV vitamin C that was making me feel better. Unfortunately, I quickly crashed again, and became sicker each passing day. 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 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 were usually false negative, were all positive, including the ELISA, western blot, even by the obnoxiously flawed CDC criteria. 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. I cannot stress this point enough. It does not matter what the tests show because Lyme disease is a clinical diagnosis.

To make matters worse, I got bit by another tick! 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.

That miserable tick did this! At daybreak, I had a friend drive me to you guessed it, the ER. They took blood, recorded that I had a 103-degree fever, and gave me 2 weeks of Ceftin, another antibiotic. They sent me home with orders to rest, that I had Lyme...again. Oh my god! It kept getting worse. My heart went crazy, it was pounding at 150 beats per minute while I was lying down trying to sleep and it never calmed down. At the spot where the tick was attached I had a really annoying muscle twitching. The twitching spread to my entire body and never stopped. I had horrible sweating, a really weird, out of it feeling in my head, low blood sugar, nausea, and vomiting. I know now that is the exact day that my Neurally Mediated Hypotension (NMH) started and babesia blasted me into a whole new realm of infection. The spot of the bite twitched for weeks, calmed down, then started back up again. The hospital results showed a positive ELISA and western blot for Lyme. They told me to take all of my Ceftin and I would be fine. At least I received some treatment that time. Of course, hey did not check for babesia or Ehrlichia. If they had...any clue whatsoever, they would have checked me for malaria!

After 4 more mad dashes to the emergency room, now knowing I had Lyme disease, from a myriad of neurological symptoms, I finally found a piece of information that held hope. I bought the book, "Everything you need to know about Lyme disease" and found the name of a doctor who seemed to know a lot about Lyme. After reading the book, I had a breakthrough, and I had found out what was wrong with me. I did it all on my own, all these doctors could not figure it out, but I could read a book, and it all made sense. After being verbally abused in the hospital for two weeks by infectious disease ducks, rheumatologists, and shrinks, I left the hospital once again, sicker then when I arrived, and half paralyzed on my left side with my skin feeling like razor blades, because they took away my antibiotics. I was released and sent home with more painkillers, Vioxx, and steroids for inflammation. I went home sick with tingling pain sensations all over my body, the numbness, and unable to feel most sensations on my skin. They refused to address my Lyme disease.

The same day I was released from the hospital, I went onto the Internet to research what I had learned in the book. I found LymeNet, a wonderful online forum for Lyme patients and a wonderful source of information. I knew I had to save myself! It took a heck of alot of guts and courage..but I did it..and I fought to save my own life. After posting a desperate plea for help, I got an answer, and along with it the address and phone number of the doctor. I dragged myself out of bed for an hour a day and went on the Internet having no idea how to use the thing, and I found help, answers, and treatment guidelines. I knew I could not give up now, I finally knew what was wrong with me since I was a young teenager!

The day my journey of mental and emotional pain and suffering, misunderstanding and abandonment came to a halt was the day I walked into the office of my LLMD. He read over my folder full of lab tests, and my 20 pages of typed personal history of the previous years. He told me he knew what was wrong with me and said he could make me better. He said I had been grossly under-treated and mis-diagnosed. He said that although my health history was bad, that it was not unusual to him. He had seen thousands of patients just like me, who were sick and desperate. He examined me, discussed my diagnosis, and what treatment I would need. He said my case was severe, and that I may get over this all together but it will take a long time.

I cried tears of joy! Finally, someone had listened to me, and I found a doctor who understood this awful disease. He outlined my treatment protocol that would consist of IV antibiotics, hyperbaric oxygen therapy (HBO), nutritional supplements and adequate rest. I had to have a minor operation to have a Hickman catheter, central line put into my heart so I could do my IV treatment at home. It is the same central line to the heart through the chest port that chemotherapy patients have to use. After my appointment, my Mom took me to the ocean and we cried tears of joy! I sat there crumpled in the sand staring at the waves crashing, and the sun shining through the clouds. It had taken every ounce of my energy to reach that point, to make the trip, to survive all those other doctor's and still have the strength to travel to THE doctor. I was completely exhausted, and yet felt a spiritual and emotional renewal. The love and gratitude I felt for this new doctor was overwhelming. How do you thank someone who saved your life? I told him I would never give up, that I was a fighter, and that I would climb mountains again no matter what! He gave me a big hug, and sent me on my way to start the journey back to health.

My treatment began with IV antibiotics on New Years Eve. My co-infection testing proved positive for babesia, Ehrlichia, and Bartonella. I had no idea, just how much sicker I would get! When you start Lyme treatment, you get sicker before you get better. I had this herx sickness, which is a worsening of all symptoms, plus the addition of new ones for 8 months. I could not function at all, and lay bedridden with my IV's dripping day after day. My blood pressure dropped so low with the herxing that my LLMD prescribed IV fluid bags for me to do every day, just to keep my blood pressure up. I dripped the 4 hours of IV saline solution and magnesium sulfate into me, followed by the 2-hour drip of IV Zithromax. I also had to do IM Bicillin shots and swallow pills. I was concurrently being treated for the other tick infections I had, babesia and Ehrlichia. The medication for babesia (Mepron) is an anti-malaria drug, a yellow nuclear looking liquid I had to swallow. I did not leave my house for nine months except go travel to see my LLMD, with a bed in the back of the car, and my IV bag hanging on a coat hanger. I was too weak to do anything except sleep. Reading was impossible, and talking to others made me have anxiety and panic attacks.

A "herx", which I will now explain, makes everything worse. A "herx" stands for (Jarisch-Herxheimer reaction) is when a Lyme patient gets temporarily much sicker as a result of the antibiotics killing of spirochetes, and releasing toxins. It is like throwing gasoline on a fire, suddenly everything explodes, and gets worse. Hyperbaric oxygen, flagyl and every single antibiotic I took for Lyme made me herx. The entire first year of my therapy was one big blur of "feeling worse before feeling better" herxing, and misery. As part of this reaction, many patients describe becoming suddenly aggressive without warning. When I would herx, I got foggy in the head, confused, slurred my speech, got totally exhausted, shaky, weak and wanted to be left alone.

I flew into several Lyme rages where I had no idea what was happening, I started breaking windows and throwing things around and had the most painful herx, right in front of my family. A bad herx can last from several hours to several weeks. I herxed for almost all of the first 2 years on IV antibiotics. I never quit taking my antibiotics during a herx. Some people back off them, I kept going, it is the fighter in me, and I would not let the germs win. Flagyl was a real eye opener for me. After I would take a pill, an hour later my muscles would twitch like crazy all over my body. My muscles would get stiff, and my whole body would be swollen and in pain. Flagyl made me so tired I could sleep for weeks and wake up acting like a drunken zombie. Once the disease has spread into the peripheral and central nervous system, hang on tight! It can begin as tingling sensations anywhere on the body, for me it felt like shooting and stabbing pains from head to toe. Don't be afraid of Flagyl though! It gets a bad reputation for good reason! The stuff works really well, so take it, and grin and bare it! You will herx yoru brains out but it means you'll get back to your life sooner!

I began Hyperbaric Oxygen treatment (HBO) as an adjunctive therapy to my antibiotic protocol. My treatment plan began with a series of 60 treatments in a monoplace (single person) chamber. I did two treatments daily, Monday-Friday at 2.4 atm. The first dive took a little getting used to, but I did really well thanks to my "divers ears." The chamber was nice and comfortable with a nice mattress to lie on, a pillow and a blanket if I needed it. The chamber was great! I could watch TV, movies, and listen to music in there. You have a hyperbaric technician, a nurse and a doctor all there for you while you do your treatment, so I was not afraid. It takes about 10 minutes to dive to pressure depth, during that time you have to equalize your ears. I found that very simple with the procedure the technicians taught me. Once at pressure, I could sleep the entire time.

The worst of my neurological symptoms came out during this therapy. I had panic attacks, hallucinations, nerve pains, muscle spasms, encephalitis, fevers, flushing, joint swelling, edema, and total exhaustion. I grew too tired to handle it and had to have my Mom come stay with me all the time, feed me and help me with my IV's. The flushing in my face was so bad it felt like I had a severe sunburn 24-7 and it was not only disgusting to look at, but it hurt and I was so dizzy because all my blood was in my skin. After the initial six weeks of HBO, I went home to lie in bed while the herx cleared (the worst it ever got, or so I thought) hallucinations and anxiety so bad I needed a Xanax pill just to go to the bathroom. I could not sit at the table to eat. I could not handle lights being on, cars driving by the house, any noises or sounds. Even people talking had me shrieking in pain from my brain. All I did besides sleep was stare at my lava lamp for hours. Those chambers made me herx so hard; I had visible shakes and muscle twitching, rashes and nerve pain during my dives.

Hyperbaric oxygen was a huge factor in my success. I continued with the treatments in the monoplace chamber for over a year. I started with 60 dives, and then did 10-15 treatments each month as maintenance. I infused my IV an hour before each treatment to maximize the effect. I also did hot bath treatments before and after each dive.

Right in the middle of my treatment, I decided to try a different type of oxygen chamber, the multiplace (multi-person) chamber. It was less expensive than the monoplace, and closer to home, so I tried it. I wish I never tried it! My experience in the multiplace chamber was not pleasant. First of all, I was with other people, and it was very uncomfortable. You have to sit up and wear a mask over your head. The mask kept leaking air out of the neck gasket and deflating on my face. The other patients in the chamber were not instructed how to equalize their ears, and my treatments were interrupted countless times. You cannot rest, and forget about sleeping, that is impossible in there. I got no help from those treatments; I got no herx, and felt no effect at all. I found out later from my LLMD that in the multiplace chamber, I did not absorb the pressurized oxygen through my skin, which is where spirochetes like to hide. The hood had a design flaw, and it lost its potential effectiveness through air leaks. Every single one of my multiplace treatments were either delayed, or ruined by other patients who were claustrophobic, could not equalize their ears, or complained about the pressure depth and wanted to stay at 1.7 or 2.0 atm. I needed 2.4! It was very frustrating, and wasted a lot of time and money. Before I knew the facts, I tried another multiplace chamber. This one was a bit different. There was only one other patient with me who also had Lyme. We dove to 2.4 but it never felt like it. Again, no herxing, no nothing! The mask was better than the hood at the first place, but it still felt "whimpy." It is very frustrating to deal with the lack of individual attention in a multiplace chamber. Treatments are started and stopped so many times it can take hours just do a single dive. Even though the multiplace chamber says you are at 2.4 atm, it is more like 2.0, and I could feel the difference. I got fed up with the lack of results, and went back to the monoplace chamber.

As soon as I went back into the monoplace chamber, the herxing began. I experienced twitching, nerve pains, and even rashes coming back again on my skin from original tick bites...amazing things! It knocked me down hard, and my herx was so powerful I needed medical intervention to calm it down, and a break from the meds. After two days rest, I continued my dives, and did ninety more.

During my first few months of Lyme treatment, another medical discovery was made. I had a tilt table test (TTT) with Isuprel challenge done. This is an invasive test done by a cardiologist. You are strapped onto a table with your arms spread out, and the rest of you tied up in Velcro like Hannibal Lector in "Silence of the Lambs." Your tilted upright, strapped in and your heart and blood pressure are monitored closely. After that, you are given Isuprel and your heart beats at its maximum while you are lying still, kind of like Ripley in "Aliens" when the baby alien rips its way out of her chest. When my heart rate reached 180, they tilted me up vertical and I passed out. My heart rate dropped from 180 to 65 in one beat, and my BP dropped from 140/70 to 50/0 and I fainted and was out cold until they stopped the test and administered the anecdote to the Isuprel. It was an exhausting experience, however, this test turned out to be one of the most significant tests and discoveries of my health journey.

I had a combined neurocardiogenic and vasopressor response, a double fail. This means that the Lyme infection had inflamed my vagus nerve, which is the major communicator between my heart and my brain. The inflammation caused the nerves to misfire sending the wrong messages to the brain, to stop the heart. The treatment for the symptoms is beta-blockers, Florinef, Zoloft, high salt diet, extra hydration and to avoid heat and stress. All these meds made me gain tons of weight, and it was no picnic! Still, at least I could walk around without fainting. This NMH has been the hardest to treat and cure, I still have it and have to probably take meds for life. If I miss a dose of beta-blocker, my heart rate increases rapidly, despite going to the gym and all the treatment I had. Nerve damage doesn't heal easily!

During this time, my blood pressure during this time was typically 80/50, very low and I fainted a few times. One time I fainted in the shower and passed out and smashed my head into the stone sink, and sliced my scalp open. I crawled to the phone and called 911 and the ambulance came gain, and said my blood pressure has fallen to 70/35, and my blood volume was dangerously low. I got 3 big bags of IV's, talked to some more clueless doctors and went on the steroids after that. Steroids are nasty! They make you huge and wreck your immune system. When I fell asleep for the night, I often wondered if I would ever wake up again. It was really scary.

Many times, I felt my body ache with exhaustion so bad that it took too much energy just to breathe. As time passed, I did 120 more hyperbaric treatments, and 9 months of IV antibiotics. I gradually grew stronger, and watched happily as many of my symptoms began to disappear. I spent months without leaving my house and weeks without getting out of my bed. The IV's gave me Herxheimer after Herxheimer, and knocked me down hard for what seems like forever. The IV Zithromax got rid of many of my most annoying and painful symptoms, but it took many months for them to clear. Treatment for babesia took away my fevers, night sweats, chills, flushing, hallucinations, panic attacks, and anxiety.

I ended up switching from IV to oral antibiotics due to two serious cases of blood infection from the IV line. It happened suddenly and without warning, but I got a 106 fever and total delirium and went into septic shock (which kills most people) because a bad, gram-negative bacterium got into my IV line. When I started my infusion, I flushed it into my heart, and all hell broke loose in my body. I called 911, threw up all over my bed, turned white, shook uncontrollably and passed out. It is a miracle I lived. It is an even bigger miracle that I could even dial 911 because most people just die right them from the sepsis. The police kicked in my front door to get to me, unhooked my IV's and the ambulance came and got me, and I had emergency surgery to remove the catheter. The doctors in the ER had no idea what was wrong with me when I first came through the doors. They thought I had contracted West Nile Virus since my temperature was so high, 107 degrees.

I absolutely insisted through my babbling valium-induced stupor that they my LLMD. When they finally did, and he saved my life over radio dispatch from the ambulance and he told them to "pull that IV line right away, she has sepsis!" I have never been that sick, I barely remember calling 911 as I shook violently and vomited all over my IV lines. That call saved my life because the doctors in the ER were so stupid and Lyme illiterate, they were not even going to pull the line. You cant even imagine how sick I was, you don't want to, it was that bad. I woke up packed in ice and really scared. I remember then my Dad came in and I woke up traumatized from the ER.

After 2 days, I was home with the line out, a hole in my chest, and an appointment with the surgeon to get another Hickman catheter put in. To make a long story short, I had the operation to get the new IV line put in. This time the new IV line lasted 21 days before I got sepsis again! The second time it happened I called 911 again, and deteriorated over 3 minutes time to a ghost white-faced siezuring dying person. I was taken by ambulance to the hospital again, and this time knew what to do, but yes, my LLMD called & told the ER docs what to do and he saved my life again! I was due for another six months of IV, but after that my LLMD and I agreed to stop IV, and I went on long-term orals. The woman who pulled out my IV yanked the catheter out of my chest and dropped in on the floor, it hurt so much and she was supposed to use sterile procedure and culture the tip of the catheter. I refused to do anymore IV after that, it was too big a risk for me and I was tired of playing Russian roulette with my life. If you have a PICC line or a Hickman, please be very careful, and alert for any sign of sepsis. Ask your treating doctor what to do when or if it happens!

In addition to the orals, I took a combination of Rocephin and Bicillin IM shots twice per week. Magnesium sulfate shots, and methycobalamin B-12 injections were added for support. I continued aggressive HBO until I was well enough to take a trip out to Colorado. I was so exited to be alive again, and feeling halfway decent too, I ended up over doing it big time, and my friend and I put 3000 miles on the rental car & drove from Denver to the Grand Canyon! I was alive again! Hooray!

I over did it big time in Colorado, and felt totally wiped out upon return to New York. I still say it was worth it to feel alive again in the mountains, and not be attached to my IV pole. Back into the monoplace chamber I went! I took high dose combinations of oral antibiotics, and did hyperbaric oxygen during the week. On a break from my monoplace hyperbaric treatments, I tried out a portable, mild hyperbaric chamber that a friend of mine bought. What a joke! It did nothing for me, even after daily treatments. The inflatable plastic chambers can only go to 1.3 atm. Some people even tried to convince me that these chambers would cure me, what a laugh! What a huge waste of money! I also tried 2 types of Rife machine, none of it did anything.

Many times throughout the years people would say, "you're still sick?" it drove me crazy! People do not realize, or take the time to read about Lyme and understand it. You are not going to get better in a few weeks to months if you have been ill for half your life. Lyme patients are generally treated like dirt. We get little to no respect, and are not taken seriously because we "look" fine. This is not the common cold people! We have no cure yet, so stop asking us why we are still sick! Fighting this disease is harder than working a full-time job. You have no idea just how precious life is until you lose your health.

The combination of aggressive IV and oral antibiotics, treatment for babesia and Bartonella, and my hyperbaric oxygen therapy made an enormous difference in my life. I went from being bedridden to independent and functional again. I could do everything anybody else could; I just had to pace myself. Ketek was the last antibiotic I was on. It was powerful, and did a great deal of killing spirochetes. After that, my Lyme symptoms lessened significantly. I gradually tapered off antibiotics using IM Bicillin in 2004.

I have been off antibiotics for over five years and I am doing well! I have had some gastrointestinal problems (c.difficile infection) one of the side effects of long term antibiotic use. GI problems can be just as hard to figure out as Lyme, especially the whole Irritiable Bowel Syndrome (IBS) clinical picture. IBS seems to be another clustered diagnosis of symptoms, like CFS is, which probably have a bacteria at the root cause. You go through all the tests and uncomfortable probing scopes, and it's hard to get a conclusive diagnosis. They have yet to find a cause for Crohn's disease, etc. Despite the GI issues, I have yet to suffer any significant Lyme relapse. I used some of the Nutramedix herbal protocol (Samento, Cumanda, Enula, etc.) for maintenance and found it to help keep the Lyme away for good. Life is so much beautiful because of where I have been. Trust me when I say, if I can get better, so can you! I am back to living life the way I want to and on my own terms. I am climbing mountains again, downhill skiing, traveling, working, learning, and enjoying life with my family and friends.

How did I survive this?

My family raised me to be independent and determined. I was a mountain climber, and I was familiar with challenges. For the thrill of adventure in the outdoors, I used to risk my life on purpose before I got sick. Rock climbers, whitewater kayakers and mountain climbers know what I am talking about. It is our choice to risk our lives to make our lives fuller and richer by living wild, and on the edge. During my darkest days, I remembered the lessons I learned while mountain climbing. Mountains are beautiful, almighty and powerful. Reaching the summit requires physical strength and mental perseverance. You cannot give up if you want to conquer the mountain's majesty. My journey taught me patience and gratitude while strengthening my already fierce and determined spirit. Although I am still alive, not having my dreams come true has been a death of sorts. My identity and my freedom were lost. I learned that no matter how challenging a mountain is, the hardest mountains to climb in life are invisible. My love for life kept me alive, and fighting for survival. It has been a long and tortured climb, although beautiful at the same time. Sitting here writing about it makes me feel like it is a rare experience, and a true accomplishment. For more on how I survived this, check out my article Climbing your Mountain.

All of this medical drama is now available on the Discovery channel's Mystery Diagnosis, the first season. The Discovery producer's stumbled across my story in the newspaper, and contacted me. They sent a film crew to my house and spent a day interviewing Dr. B and myself. We've gotten quite a bit of feedback, and all postive. Thanks Discovery for doing my story justice and to the actors who played us. Good job!

As for the rest of my life, I am now a dedicated Lyme activist working hard to spread the word to others who are suffering from this life-sucking beast of an illness. I have made some truly wonderful and precious friends during this Lyme journey. When you are as sick as I have been, it takes one to know one. Most of my friends abandoned me when I got sick. Lyme turned out to be a blessing in that respect. A true friend is one who walks in when the rest of the world walks out. At one point, when I thought I was going to die, I wrote letters to all of my family and loved ones. I put all my deep feelings down on paper and tucked them away so that if I died, they would get my letters. I have a great support system, and I love my life.

I am now enrolled in Medical School training in the PA program. When I am finished, I will be a Lyme Literate Physician Assistant. It's hard work, but I fully intend to give back to the Lyme community for the rest of my life, and I have been educating my friends and colleagues about tick borne illness every chance I get.

No matter how I feel, I still go out and live each day. I work on my rehabilitation at the gym with my trainer every other day. Exercise has been essential to getting better. You have to start slow, and rest in between, but it makes a huge difference in your stamina and immune function. Midway through my illness, I realized that I could be sick at home, or sick out having fun, either way, you have to go on! Going on with your life as planned is important people. Get busy living, or get busy dying! Do not forget, you are still alive, and you still can do it if you try hard enough. Do not give in or give up, it just isn't part of the master plan. Climb the mountains! The beauty of the sunrise on the other side is well worth the journey. Remember, if you have hope, you have everything.

Healing thoughts,
WildCondor

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Email: wildcondor@yahoo.com

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