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| WildCondor's Story |
| Welcome! An updated version of Lyme story along with a brand new website is in the works and will be posted as soon as it is completed. In the meantime, the following is a short version. Thank you for visiting, and for your patience. Please check back later this spring. I have big plans for 2013! Thank you friends! ~WildCondor |
| Welcome! I am going to share the short version of my life story with Lyme disease and co-infections and much of what I have learned throughout the years with all of 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 my site 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. It has been over 10 years of having my story and this website up, and over 3 million visitors, so thank you for visiting, and healing thoughts to you all. The Beginning… Before I got Lyme disease, I was a mountain climber, and an athlete full of energy! I had an exiting career planned in the environmental field. Helping nature and animals was always my dream. My dreams motivated my life, and I had a passionate interest for the outdoors. As a teenager, my love for the outdoors led me to work blazing new hiking trails, and camping in 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 used tweezers to pull the ticks out by the dozens. Back then, what was Lyme disease? When I was growing up in the 1980's, Lyme disease was a new discovery, and thought to be easily treated with antibiotics. It seemed I had no reason to fear ticks, so I continued doing what I loved, being outdoors. 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! Symptoms begin… I began to experience fatigue in my early teens, and questioned the possibility that I might have Lyme disease. My pediatrician tested my blood, which came back negative. Eventually, I returned to him and was prescribed ten days worth of Doxycycline, just in case it was Lyme. The medication made me feel worse, and the doctor told me to stop taking it after only three days, despite the fact that I had two bull’s-eye rashes on my back. I was nauseated, exhausted, my joints hurt and I had pain in my eyes. All I wanted to do was sleep. I grew so weak I had to drop out of my high school sports teams. I tested positive for mononucleosis, and was instructed to rest and it would go away by itself. Misdiagnosis starts… After another couple of doctors, I was told that my mononucleosis had progressed to 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. In addition to the exhaustion, I began to exhibit new symptoms, including muscle and joint pain, swollen glands, fever, upset stomach, confusion, tingling sensations and sensitivity to light and sound. I was heartbroken that I could not do anything fun, and most of my friends abandoned me. As my symptoms increased, I sought the help of over 40 doctors. I was diagnosed with chronic fatigue syndrome (CFS), fibromyalgia (FMS), multiple sclerosis (MS), 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. My symptoms progressed to the point of complete exhaustion. I was too weak to brush my hair, or even sit up to drink some water without assistance. If I did get up to go to another “hopeful” doctor, I would be wiped out for days afterwards from the exertion. CFIDS… I spent weeks in the hospital for CFS, still untreated for Lyme. I was given painkillers, anti-inflammatory drugs, steroids, and dozens of diagnostic tests. Even while lying in a hospital bed and my Lyme tests were positive, I was never treated. The doctors determined that my positive Epstein-Barr virus titer was the cause of my complaints, and diagnosed me with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). I was released and sent home with antidepressants and rheumatoid arthritis drugs, and yet another diagnosis of CFS/CFIDS. Countless frantic visits to the emergency room solved nothing. Sick and petrified, I would lie in a hospital bed dripping with sweat, high fever, my whole body numb, and tingling nerve pains shooting down my arms, legs, and back. My face drooped, I had facial flushing, and my body ached down to the bone with intense pain. The doctors would dismiss me as healthy on paper, and discharge me with orders to find a chronic fatigue support group and see a shrink. Alternative therapy… I tried many different alternative therapies to try to fix my chronic fatigue. My alternative treatments included hydrogen peroxide IV's, ozone sauna, UV-B photo ox therapy, IV vitamin C drips upwards of 75 grams, multi-mineral and vitamin IV's, Myers cocktails, detox therapy, Chinese herbs, homeopathy, poly-MVA, and all sorts of machines and gadgets. The IV Vitamin C gave me a temporary boost in energy but nothing long lasting. Lyme time… Lucky for me, I do not give up without a fight. My determined personality kept searching for help and answers. I spent hours researching medical literature and educating myself on the complex nature of tick-borne diseases. After arming myself with as much information as I needed, I found that my symptoms matched up closely with those of neurological Lyme disease. It all made sense to me, the years of tick exposure, hundreds of bites, the rashes, and the exhaustion, all of it just “clicked.” It was a defining moment in my life, one of many. I knew I needed a Lyme literate MD. LLMD time... After the entire trauma I had been through, I was praying so hard that I would find a Lyme doctor to finally help me. I went online searching for a “LLMD” and was referred to a Lyme doctor in Westchester county, NY. I waited a few more months for an appointment, and prayed that this doctor would be “the one.” When appointment day finally arrived, at first I thought that I was in the right place because I had been given some hope from an online support group. Unfortunately, this doctor told me he did not want to be bothered with me, and especially did not want to have to be called to the ER to “deal with me.” When I asked about the babesia, I was told it was not possible unless I lived on Long island. I was told my symptoms were being “exaggerated.” This doctor would not take the time to listen to my medical history, and freaked out when I explained I just got out of the hospital for the 5th time in only a few months. I was crushed! How can this doctor call themselves a LLMD? I was utterly disgusted. I felt just as I had felt before my so many other doctors, ignored and tossed aside. I left the office crying, totally lost again not knowing where to turn. Months passed and I saw another LLMD but ran into another roadblock. Althought this one believed in chronic Lyme, they wanted to do even more expensive testing, and the highly inaccurate spinal tap in order to satisfy my insurance company. All the testing this MD wanted held up my treatment for months. I didn't have anymore time to wait! I learned a very important lesson though, all LLMD's are not created equal. My guardian angel… With extreme luck, I ended up finding an amazing Lyme disease physician affiliated with the International Lyme and Associated Diseases Society (ILADS). He read over my folder full of lab tests, and my twenty pages of typed personal history of the previous ten years. 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. Working on the front lines of tick-borne disease, he had seen thousands patients in his practice, many of whom had been turned away by previous physicians who lacked comprehensive knowledge of tick-borne disease. My LLMD 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 would take a long time. All of my Lyme disease tests, plus a myriad of co-infections including babesia, Bartonella, and Ehrlichiosis came back positive. Gratitude... To this day I cannot express my gratitude for this wonderful man enough. I have tried over and over to thank him. How do you thank someone for saving your life? I decided instead to make it my personal mission to share everything he taught me with anyone who would listen, and promised to always give back to the Lyme community and not just leave and move on with my life once I felt better. So far, 10 years later, thousands of emails and online posts later, I have helped save many lives. We will never go away. Even after I die, my story will live on and with is, his knowledge and beautiful spirit. Please see my article on Eternal Gratitude I wrote for more insight. Treatment begins… Finding my Lyme doctor finally ended my quest for a diagnosis. Personally, it brought an end to ten years of emotional suffering, misunderstanding and downright neglect from the medical community. My treatment protocol included IV and oral antibiotics, malaria medications for babesia, and a combination of medicine for Bartonella, and monoplace hyperbaric oxygen therapy (HBOT). Combined with nutritional support and physical rehabilitation, my protocol made an enormous positive impact on my health. I went from being bedridden to being independent and functional again. I could do everything anybody else could; I just had to pace myself. It took three years of antibiotic therapy for me to feel back to my old self again. After 4 years of treatment, my symptoms lessened significantly. I have been off antibiotics for six years now. Although not cured, my stamina and endurance have improved enough to get me back enjoying life once again. I am determined to get to 100%! Stay tuned! Discoveries… I have since discovered the reason why it was such a battle for me, and countless others to receive a correct diagnosis. Based on my personal experience, I estimate that an alarming percentage of primary care physicians and family doctors have no idea what they are doing concerning diagnosis and treatment of tick-borne disease. The blame has to lie somewhere. Being ignored and abandoned… 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. Problems with testing… A very important point to make is how poor the testing for Lyme disease is. All of the current tests that are available have problems. There are simply too many strains of the infection to be picked up on one test. Also the sickest patients will often have negative blood tests because their immune systems are not mounting a detectable response. There are so many co-infections to test for that if your practitioner fails to order even one, the diagnosis can be missed. The ELISA and western blot are notorious for yielding false negative results. The PCR is hit or miss. Spinal taps miss 90% of cases according to the 2012 ILADS presentation. Tick borne infections are a diagnostic dilemma. I cannot stress this point enough. It does not matter what the tests show because Lyme disease is a clinical diagnosis. Even the CDC lists Lyme disease as a clinical diagnosis. There is currently a Lyme disease culture available which in my experience is probably the best bet to get an accurate result. For info on the culture test see my Lymelinks page under testing. Practitioners should be diagnosing patients based on their history of tick bites, where they live (Lyme is everywhere now) and symptomology. That said, a western blot can assist your doctor in supporting his/her clinical diagnosis. You only need one Lyme specific band on the western blot to prove Lyme. The bands I have been told are Lyme specific are bands 18, 23, 31, 34, 37, 39, 83 and 93. Political War… The Infectious Disease Society of America (IDSA) has written guidelines for treating Lyme disease that in my opinion are inaccurate, outdated, and fatally flawed. The doctors I saw during my quest for diagnosis likely followed these guidelines, and therefore concluded that I did not have Lyme disease. If your doctor takes insurance, and wants to treat you for Lyme, they are likely obligated to treat you according to your insurance company's accepted Lyme disease treatment guidelines. Those guidelines usually come from the CDC and the Infectious Disease Society of America (IDSA). In my opinion those guidelines are fatally flawed, meaning that because of how poor they are, patients treated according to them have ended up under-treated, disabled and maybe even dead. Please use caution and ask many questions when choosing your doctor. (Please read my Lymelinks for more information about the Lyme conspiracy.) It is much easier for these doctors to give you the cold shoulder and label you with CFS or fibromyalgia, rather than to even involve themselves with the word “Lyme.” I have noticed a marked anger and hostility even in some of these doctors’ voices when they hear the words ‘tick” or “Lyme.” Ask yourself WHY is there a need to get so defensive? What are they all hiding? Can you also please ask yourself why there was ever a need for a Lyme disease vaccine if according to IDSA Lyme is so easily cured? Any dollar signs popping into your minds yet? We are only scratching the surface. Diagnosed with symptoms… In my experience, what many patients need 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 six months or more, you are probably going to be diagnosed with chronic fatigue syndrome. You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense to me! I think you always need to find the cause. Patients will join chronic fatigue support groups, go on disability, and tell their family "I know what's wrong with me now, and I have chronic fatigue syndrome." I still find it amazing just how many people get sucked into what I believe is a giant conspiracy and illogical train of thought. None of it makes any sense to me, and yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with a strong possibility of undiagnosed and untreated infection. Chronic fatigue and fibromyalgia logic... 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. In my opinion, normal, healthy people do not just suddenly come down with arthritis, or become exhausted all the time for no apparent reason; there is always a cause. The term “syndrome” bothers me to no end; it is just a word for a cluster 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. Sick people seek out a cure for arthritis, for example, 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. You have to become your own medical detective when faced with a chronic illness. It is your responsibility to arm yourself with the information you need to fully educate yourselves. A possible solution to the debate… I personally think that after 20 + years of all of the political wars going on about the proper diagnosis and treatment of Lyme disease, that we should just rename the disease. It just does not make sense to me anymore to call all of this Lyme. In speaking to my LLMD he mentioned that over 95% of Lyme patients are infected with co-infections. For some of them, borellia is not even their primary problem or cause of symptoms. For many, babesia and bartonella cause far more trouble for them treatment wise. For others, there could be a genetic inability to properly detox. So with all the variables to consider, plus the lack of respect for Lyme in mainstream medicine, why not just call it something else? If we call it something like chronic tick borne disease CTBD, or something like it, it makes more sense. What would be left to argue over if we take the “Lyme” out of the name? We could call the doctors that treat Lyme ‘tick borne disease specialists’ instead of LLMD’s. Stay tuned; it just might happen one day soon. Lyme movie… There is a movie that I suggest anyone wanting to learn about Lyme disease watch called Under Our Skin If you want to know more about the political side of Lyme I suggest Under the Eightball. Please look at the top of my Lymelinks page for the links for where to watch Under Our Skin free online. Be careful with advice… Today there is a great deal of conflicting information available for tick-borne diseases. Please be very careful what sources of information to trust. If you read something online, be sure to verify it. If you are referred to a Lyme disease literate doctor (LLMD), make sure you speak to patients who have seen that doctor and gotten them well. Please use caution in your search because it is very easy to get overwhelmed with all the different opinions regarding treatment. I have seen so many patients get their hopes up, only to end up with a horrible referral. Only you know what is going to best for you, so trust your instincts! Sometimes it takes 1, 2, 3, or 4 LLMD’s before you find the right approach that works for you, please do not give up! Don’t be a “Lymie”… I used to think the term "Lymie" was funny and cute, and I still think it is, in good fun, but please be careful not to let Lyme disease, or any illness define who you are as a person. You are you, and let your true self shine! Please stop acting like a victim. Go make the day positive, go meditate, or try to do something productive. 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, even if that means going for a 5 minute walk, or sitting in a chair outside. The beauty of the sunrise on the other side is well worth the journey. Remember, if you have hope, you have everything. Be a warrior! Give back! Help others, and do everything you can to expand that dash that represents your life. My best advice is to remember my story and always fight to seek out the cause. Please stay tuned! The long version of my story is currently being edited and updated. 2013 will be an exciting year and I have a few surprises for all of you! Wildcondor.com Lymelinks page Donations... After 10 years of Wildcondor.com, and countless hours dedicated to helping others via emails, phone calls, skype, facebook and online support posts, I am finally accepting donations if you feel my story or my advice has helped you on your journey toward wellness. I hesitated to do this for many years, but I will cut right to the chase, I am now pursuing a career in the medical field and need all the help I can get! The Paypal is donations@wildcondor.com THANK YOU! Disclaimer *Any information presented on this website is intended for educational purposes only. Wildcondor's personal Lyme disease story may not be copied, posted elsewhere on the internet, or printed for distribution without written permission from Wildcondor.com. Everything written above is the authors own opinion and should not be interpreted as fact. Information and links provided should not be a substitute for seeking professional medical advice. Please explore at your own risk. Thank you. |
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