Lyme Disease: Introduction: Many people with various physiological and psychological complaints may in fact be infected with Lyme disease or other ticks spread infections, and yet continue to go untreated for a variety of reasons. The condition of tick spread illness (especially Lyme disease) is drastically underrated, and It is very likely that Lyme disease is mimicking many of the chronic (so called incurable) conditions in our communities. Many of the people who get Lyme disease often are misdiagnosed - they are told they have everything from: multiple sclerosis, Alzheimer's, asthma, food allergies, inflammatory bowel disease, eating disorders, and other abstract psychological ailments. Is it also true that many patients are told by their doctors that, "nothing is wrong - all your tests are negative" regardless of what the patient has reported first hand based on their symptoms. If the patient persists in complaining about the symptoms - it isn't uncommon that they are told they suffer from hypochondria and then end up being referred to a psychiatrist. This disease can disseminate through the entire body of a human being in only a months time from the date of the initial tick bite. Many students, parents, and even teachers are at risk if they live near or take part in activities around the woodland areas in the United States, and they must be made aware of just how serious this and other tick spread infections are. People who are active outdoors are most at risk. This disease is most likely present right in our own backyards. Much of what is discussed publicly about Lyme Disease is very inaccurate. That which is accurate in the media tends to severely minimize the disease drastically by only describing the illness vaguely - such as the bull's-eye rash, or feeling sickly after the initial tick bite. The media tends to focus on prevention and the tick itself primarily. Prevention isn't enough in my opinion. This is an intricate disease, with many faucets, and a complete picture is necessary. Prevention is important, but so is the impact the disease has on the individual, and so is the correct treatment protocol. If these areas are overlooked then many thousands of people fall through the cracks of the medical system and are not receiving the care they desperately need. Patients need to know what symptoms to look for if they do get sick. They also need to know how to pursue the right medication, as well as the correct duration of treatment. Leaving it up to the doctor is simply not enough with this illness. Under-treatment & complete relapse is common, and controversy among the medical community is incredibly high right now regarding what constitutes "curative" treatment for Lyme. By the media minimizing this condition it has led to misunderstanding by both the public as well as physicians treating the public for the disease. Many doctors locally simply don't have enough information on this illness even though the medical literature is loaded with thousands of articles regarding what works and what does not. Unfortunately because of the diseases complexity one would have to specialize in it to fully grasp it, and to fully grasp it they would have to have a firm understanding of everything from politics, ethics, microbiology up through psychiatry and infectious disease. If the general public can be made aware of this disease from the point of prevention all the way through the conclusion of appropriate treatment protocol - then it would drastically improve the publics ability to face this disease and ensure people get help before it destroys their lives. If you think my story might help someone - then feel free to pass it on. Due to the length of this document I have broken it down into 3 main groups for you convenience. The summary is basically a primer - it provides general information and facts about Lyme Disease. If people would like to read the entire document after reading the primer - that is fine. You have my permission to give any part of this material out as educational material or to alert anyone you feel may need it. Past History & Symptoms. Summary - General Information on Lyme Disease. The Complexities of Lyme Disease. (Listed As the last post of this thread) Past History & Symptoms: I grew up in East Longmeadow Massachusetts, and visited the camp grounds and beach areas of southern RI, and southern CT as a young child. I was constantly active and extremely outgoing as a child, and I enjoyed exploring the woodland areas that I'd become so familiar with. I grew up in an alcoholic home, but with assistance from my mother I was entered into therapy through a counselor to gain coping skills around age 7. It was hard at this time to separate my problems from physiological or psychological originals, especially since I was so young. As I got older and symptoms increased, so did my search for answers. The wild goose chase was on. Today I am a 24 year old adult living in Enfield Connecticut, and I believe I've been sick for well over 16 years (Since age 9) with Lyme Disease. My story begins like so many others with this disease. I've had many food allergies as of age 20, and multiple chemical sensitivities as disease progression occurred in the later stages around age 19-22. It was quite obvious that my organs and gland were exhausted from fighting some form of chronic illness which had been plaguing me since I was a child. If I ate anything that contained sugar/refined simple carbohydrates, dairy (especially Milk) the symptoms would increase significantly and I would become extremely nauseated. I had become allergic to almost all foods, and eventually had to stop eating. Today I have no sensitivities that I know of or any problems with food after having steroid treatment, antibiotics as well as anti-inflammatory medications. The symptoms have been extremely complex and seemed to have progressed from joint, and muscle pain, as well as a sporadic chronic fatigue to depression around age 12-14, and then symptoms became far more severe as time went on. Vision problems, such as constantly seeing stars, floaters, and actually losing my vision a few times have occurred. I did a lot of work as a body builder from age 13 - 17 for sports, and self confidence. As I took part in these activities problems constantly cropped up while in the gym. Motor coordination became affected around age 16 and increasingly deteriorated. Then general (seemingly minor symptoms became noticeable such as acid reflux, drowsiness, and numbness/headaches), and finally full blown chronic fatigue, hair loss, chronic muscle/joint pain, and other symptoms including organ pain (kidneys, heart/chest, bowel). Most of the symptoms as a young child were centered on being tired, and having a lot of problems with memory and emotional processing. The symptoms listed below are recorded as happening sporadically for at least a period of 2 weeks or more over a 16 year span, and then reoccurring on and off in a chronic fashion. Many of the symptoms that are listed occur on a daily basis; causing debilitation, and complete disability. The earliest symptoms noted, included; low blood pressure, chronic fatigue, bowel disturbance, depression, neurological disturbance, arthritic pain, and general phantom pain throughout various tissues without known cause. Symptoms: Tiredness, Abdomen pain Extreme weight loss (80lbs in 4 months) Headaches, Nausea Acid Reflux Drowsiness Concentration problems Irritability Dizziness Anxiety Memory Loss Bladder Pain Pain Urinating Visual disturbances (Seeing Stars, and Losing vision once or twice while conscious) Depression Fainting/blackouts Nightmares Digestive problems (spasmodic pain below navel and pain throughout the colon, and small bowel) Rectal Bleeding Constipation Diarrhea Anal Fistula's Rectal infections Constant Malaise Appendectomy (misdiagnosed surgery) Aching eye sockets Lack of sex drive Indecisiveness Heart palpitations Internal Trembling Mental confusions Undue Excessive Sweating (Night Sweats Saturating Bed) Bad breath Antisocial behavior (Isolation alone) Hyperactive (Manic Episodes) Unsociable behavior (Drastic Personality Changes) Gasping for breath Restlessness Backache - Spinal Pain Skin tags Cold hands & Feet Numbness - Hands & Feet Sleep Paralysis (Including Waking up In Panic or Dread) Nervousness Exhaustion Shortness of breath Temper outbursts Sensitivity to light Sensitivity to noise Allergies Muscle Pain Muscle Spasms Phobias Crying spells Negative thoughts and attitudes Feelings of going mad or insane Suicidal thoughts or tendencies Staggering Sneezing Constantly & Coughing. Craving for sweets Unnecessary and excessive worrying Mood swings (with or without people around) Waking up tired and exhausted Arms and legs or body hurts when first rising in morning badly Feel best after 7 PM Sighing or yawning often Motor mouth (constant talking) Kidney & Organ Pain Abnormal Hair Loss Joint Pain (knee's & hips mostly and sometimes shoulders) Accident prone The Search For Answers: In the 16 years I went searching for answers I was misdiagnosed with everything from Anorexia, Manic Depression, ADHD, Crohn's Disease, Chronic Fatigue Syndrome, to finally Lyme Disease, this year. 12 times I was misdiagnosed. In 1999 I had actually begun losing a lot of weight. Every week that passed between Christmas 1999 - May of 2000 I noticed about 5-10lbs being lost. I was 205lbs in December and shrunk down to a meager 125lbs in 4 months. I remember waking up one afternoon to go to work, and seeing myself in the mirror as I passed it to get in the shower. I realized that the person I saw in the mirror wasn't recognizable. It was at this point that I became scared. I began researching online more compulsively and constantly, calling doctors, and searching for answers. Time was running out. The Emergency Room: Eventually I was no longer capable of walking. I became so weak that I would go into shock If I made an attempt to get out of bed. I decided that if the doctors would not allow me to come to them, then I would force them to see me. I would go to the emergency room. At the ER they ran general tests, (Blood pressure, checked eyes, ears, nose, mouth, and took a urine sample) and found... "get this!" *Nothing is wrong, your test was negative*. I had heard this phrase over 35 times and each time the novelty hadn't worn off. I asked if an Upper GI could be done or perhaps some general blood testing for anemia or an infectious disease. They "shrugged" and said they didn't have time, or someone available to run the tests. Can you imagine the nerve of someone telling me in the "Emergency Room" that they didn't have a person available to run an Upper GI or general blood test? I became infuriated, and more upset. As I was leaving the hospital via wheel chair I asked the nurse if she could get me a large trash bag. She then immediately asked, "Why do you need such a large bag?" I then responded saying, "I have to have something large enough to carry all my symptoms and suffering out through this door." She then gave me a disapproving look as if I was overreacting, and I became even more bitter. I was defeated again by a medical establishment which refused to acknowledge the truth, and an enemy without a face. You see, by February of 2000 - I had seen most of the doctors in my area, most of which had blackballed me from returning to their practice. When one doctor in an office blackballs you - you are then refused service by all other physicians indirectly, whether they know the truth of the matter or not. By this time I was either refused service by all in the area or I was refused treatment simply because the physicians didn't know what was wrong. Now logic dictates that if a physicians doesn't know what is going on - if they actually believe the complaint they are hearing is valid, they in turn will refer that patient on to someone more competent who may be able to help. Instead of referring me on to someone who may be able to help, I instead was left to my device and told "You're not sick, you have to stop doing this". I had asked numerous times to be referred on, but all I got were glazed eyes and excuses. My persistence was a threat, and quite annoying from their perspective I'm sure - . I had been abandoned by those who were supposed to be helping me - by those I was supposed to trust with my life. My employer continued to batter me with complaints. I was required to work even though I was debilitated, and yet the excuses with my employer were running thin as to why I was losing weight, and missing so many days of work. I had one last chance, and that was to go online, and just ask for help to anyone who would listen. One woman heard me, and her name was Bernie. She is an Anascopic nurse at the local hospital (Baystate Medical Center Springfield Massachusetts) right up the street from me. The very same hospital which I visited just days earlier in the ER. I explained my story to Bernie, and she immediately gave me her phone number. We talked, and the very next day I went to see a specialist who she setup an appointment with. The specialist was Dr. David Pleet, a gastroenterologist in the Springfield Massachusetts area. A Diagnosis & An End To The Suffering? After seeing Dr Pleet on May 1st, 2000, a diagnosis was made running an upper GI barium test. He began treatment with 40mgs of prednisone, 100mgs of Imuran (Azathioprine), 800mgs of Asacol daily, Flagyl at 1,500mgs, and Cipro at 1,000 mgs per day. I could not tolerate the Imuran at all as I was allergic to it. We tried to plow through the horrible side effects over 3 times in the period of 2 months. The Imuran caused chronic infection in my lungs (coughing up), and also brought on incredible joint pain in my knees, and hips I literally could not walk while on the Imuran, and had to use a wheel chair when going to the hospital, or doctors office. Within 2 months I gained back the weight I had lost while using Prednisone - a Cortico-Steroid. The side effects of the medication included; Joint pain, swelling, moon face, abnormal excessive weight gain, mood swings, depression, as well as acne on my back and chest. Initially when I used the medication I experienced mild psychosis (Feelings of going mad or insane). It was not an enjoyable experience The Asacol had no side effects, but also did very little to alleviate my symptoms. As the Dr. lowered my prednisone slowly it became increasingly difficult to function. I became exhausted, and the symptoms listed above slowly returned. Eventually when I got down to 15 mg's of prednisone the symptoms came back in full force, and I had a major flare up of serious, sharp pain, and bleeding. Back To Work Or A Hospital Stay? I have been out of work from May 1st - Present. I did attempt to go back to work on June 31st of 2000, and all was well for about a week. On July 7th I went to work at 6 PM as it was my normal schedule, but around 8 PM I began having uncomfortable pains coming from my lower right side. The pain began as a 2-3 on the 1 - 10 pain scale. Then within 10 minutes became an alarming 8 on the scale. I began clenching my side in agony, and called a supervisor over to assist me. I called my doctor who was "not" on call that night at 8:30PM. The doctor who spoke with me asked a number of questions, and decided to have me take some Tylenol, and hold off until 9 PM to see if the pain became manageable. Those 30 minutes seemed to last forever as I was in unspeakable pain. 9 PM came, and went, and I called the doctor back. It was off the Emergency Room once again. I was then diagnosed in the hospital as having a Crohn's flare up. The Cat Scan and X-rays showed severe amounts of inflammation from 6 inch's into the terminal Ileum, down through half the colon. I was hospitalized from July 7th until Saturday July 15th. While in the hospital I was then given: 80mg's of Prednisone, 3,600mgs of Asacol, Calcium supplements, Multi vitamins, Morphine 15mg (Every 2 hours), Methotrexate (Intermuscular Injection) 1ml, Remicade (2 hour infusion), and a lot of fluid through IV to bring my blood testing numbers back into the normal range. My white cell count remained at 15,000 even after being released. While in the hospital there was one morning where the pain became so excruciating that I began convulsing in my bed. The pain had reached a 9, which is the most pain I've ever endured in my life. It felt as though acid was being poured on my waist and my genital area. The burning and sharp stabbing became so unbearable that I no longer could endure it on my own. I immediately pressed the "call nurse" button, which I had refused to do earlier since I'm a stubborn son of a bitch. The nurse came running, and could clearly see I was in agony. She gave me 15mg's of morphine, and eventually over 45 minutes the pain became manageable at a 5-6. Mycobacterium Avium Subspecies Paratuberculosis: This is just a fraction of my experiences throughout my adolescents. After being told there was no hope of a cure by Dr. Pleet - I felt it was in my hands to search for a solution. Dr. Pleet may have saved my life, but he did so arrogantly and ignorantly. He remained adamant that no cure existed for Crohn's Disease, regardless of what the newest medical literature presented. Every week he made tirades about my unwillingness to accept the condition. He must have tried every psychological technique he had to try to get me to see things he way - including manipulation, and threatening to cut off my treatment. He told me I would just have to accept my condition, and move on. I decided to no longer see him. You're either with me or against me became my motto. I spent about 3 years studying holistic medicine, and medical data to find a cure for Crohn's disease - during my studies I found what I believe to be the infectious pathogen responsible - a bacterium called "Mycobacterium Avium Subspecies Paratuberculosis". A select few in the medical community had been doing research on this pathogen over the last century. An upsurge of new research had come about in the 1980's when a microbiologist by the name of Roderick Chiodini cultured the pathogen from Crohn's Disease patients for the first time in the known literature. "Mycobacterium paratuberculosis (Mp) causes a debilitating intestinal disorder in cattle. Diarrhea, excessive weight loss, reduced milk production and ultimately death characterizes the disease in cows, identified more than a century ago by Heinrich Johne. Named after its identifier, Johne's disease (pronounced YO-neez) in cattle is similar to Crohn's disease in humans (pronounced kronz). This chronic inflammatory disease of the gastrointestinal tract also results in severe diarrhea, excessive weight loss and -- for humans, who live a lot longer than cows -- debilitating abdominal pain, rectal bleeding, bowel obstruction, fistulas and abscesses. Chronic Crohn's will likely lead to surgery for removal of inflamed intestine, as well as a lifetime of harsh drug therapy that often doesn't work." -Lisa Chamberlain, The Cleveland Times. The idea that a pathogen could be coming through dairy and beef products and still surviving pasteurization is not a new issue - however after multiple studies on this specific pathogen known as MAP it's likely that it could be a serious threat to human health. More research must be done before the general public receives treatment, but I personally had enough circumstantial evidence to begin calling every single medical researcher and doctor around the globe who would listen to me. The Exhausting Effort: Over a period of 24 months I had contacted thousands of people involved in medical research - I questioned them, asked about specific studies - I continued to read through medical journals, began studying immunology, and pathology in depth. I began studying nutrition, health, the effects of herbs, and natural foods on the body to an extreme. I had to force myself to remember everything else I risk overlooking seemingly minor information. I realized what many probably knew - that the human body is more then capable of cleansing itself if given the appropriate tools that it requires naturally. So I setout performing experiments and different tests on myself - of course all of which were anecdotal & unscientific, but as long as "I" recovered that's all I cared about at this point. People weren't listening, and I wasn't being heard, so I had to begin with myself. Many tests showed extremely positive results, but many mistakes were made - I did not recover, but I gained significant relief. I also gained a lot of knowledge through running the tests. Through "doing" these tests, I was able to remember a great deal of knowledge from the books that had I not performed them would have been forgotten. Some natural treatments that were monitored even sent me to the ER - I'd lay by the toilet vomiting, feeling as if I would die before I ever found a solution, but I had little choice. I couldn't quit. It wasn't an option. I had to find away to hold on a little longer. Dr. Walter Thayer - Specialist In MAP: In 2001 I managed to make enough contacts to reach the number one research scientist and medical doctor whom had pioneered a lot of the research on Mycobacterium Paratuberculosis. His name was Dr. Walter Thayer. He saw me a number of times between a 12 month period - from December 2000 - through December 2001 - he turned me down for the antibiotic therapy a number of times which I sought him for to cure my Crohn's disease - he said "the treatment is too controversial, and you simply are not a good candidate for the treatment." The treatment consisted of 4 Antimicrobial antibiotics used against conventional MAC infections - patients with AIDS often are given rounds of Rifabutin, Clarithromycin, Ethambutol, and Clofazamine to destroy Mycobacterium Avium Complex infections - a bacterium which is in the same grouping as MAP. It was infuriating to hear him decline me after all the work I had done - Here I stood in no shape to even be alive - I was barely able to walk, my bowels were bleeding constantly, and I was in such debilitating pain I could not perform any of my daily functions and he has the nerve to decline me?! Well it was another impasse and I wasn't quitting here. The fight with my insurance company over disability was a huge painful process as well - nobody believed me when I stated how sick I was. Even those doctors who dealt with Crohn's Disease dismissed my "exaggerated" claims of illness. I'd been locked away because of my resistance to admit that Crohn's Disease was solely responsible for my declining health. They felt I was unstable mentally, and they simply did not feel my symptoms or disease were as advanced as my persistent claims. I spent months in Psychiatric institutions where I was locked away strapped to beds. Daily they would make attempts to come in and force medication on me to treat my "mental disorder" as they called it. I'd struggle, strain, and even spit the medication in their face. I'd lie screaming for help while they injected medications to sedate me. It was hopeless. I was losing my grip of reality, all at the hands of the ignorant. As the years passed my doctors continued to constantly send my Insurance company - disability information suggesting I should return to work and that I was capable of doing activities even though I stated I could not. I walked around like a zombie, barely capable of feeling, or expressing myself. The anger was mounting and yet what was soon to come would be shocking to all those who tried to resist my information. Time To Give Up? At this time it was January 2002 - Over 16 years, 40 general doctors of all variations, and some 100 others - infectious disease, Psychologists, Psychiatrists, Gastroenterologists, Pathologists, Cardiologists - many physicals, blood tests, and yet no solution still. My health was slowly declining to the point around this time that I was beginning to believe death would soon be coming. In an appointment with Dr. Thayer in January he continued to push me telling me I needed to exercise and inferring I was not doing what I was capable. I interjected multiple times telling him he was not in my shoes - had he been in my shoes he'd understand I was incapable of exercise, working, or any activity. My blood pressure would drop to extremely low levels whenever I would attempt to initiate physical activity, even walking or standing. My blood sugar would drop as well - my hair was falling out. I could not perform a function which my body was incapable of doing, and yet even he did not understand this. He then stated that I probably had Chronic Fatigue Syndrome - another incurable illness with little knowledge to support its etiology and little hope of relief. A New Suspect: Dr. Thayer suggested I see an infectious disease specialist down the hall from him - I nodded with little hope since I'd already been to multiple infectious specialists, but he said she was very good, and her labs was excellent. To make this utterly incredibly long story short I saw her - she was excellent, and she found a small glimmer of hope in my multitude of blood testing. She found an antibody to a pathogen I had long ago come up against during my research - B. Burgdorfri a bacterium known to cause Lyme Disease and spread via the bite of deer ticks. In my search for answers it had come to my attention by one woman that this was possibly the culprit of my condition. However during this time nearly one year ago I was studying nearly every disease known to man. Everything from Lupus to Cancer - I tried to narrow down all possibilities. My main focus was on inflammatory diseases. It was amazing how close I had come to an answer. When I first met this new doctor/. It was Lyme diseases that I most sought for her to test - she agreed, and it was discovered. She told me however the antibodies in my blood were not above the ceiling where I could be "diagnosed" she stated that the levels must reach a specific level and mine did not, so it was unknown if I had the condition and she could not provide me medication or a diagnosis. She did not have high hopes from the way she was acting - in fact I had to pry information out of her by asking her what she would do if she were in my shoes? She immediately perked up as if she was worried about what she might say and said "If I was in your shoes I would pursue this avenue diligently - My opinion is the ceiling on these Lyme tests is too high and that you probably have Severe Lyme Disease". She gave me the number of two specialists who were known as the best infectious disease specialists in New England whom deal with Lyme Disease. Dr. Sam Donta and Dr. Stephen Philips. Philips did not take my insurance, so it was off to see Donta. Immediately that day upon arriving home I began to do research and to my surprise, I found while rummaging through search engines and medical journals a select percentage of patients who get Lyme Disease also developed Crohn's Disease - the debilitating inflammatory bowel condition. I jumped and was shocked, but yet upon reading the other research it was clear that Lyme Disease often could mimic almost any condition with an "Immune system dysfunction" such as Lupus, MS, ALS, you name it and Lyme could mimic it depending upon the individual person. Many patients with Lyme also complained about chronic fatigue, and hair loss - among all the other symptoms I had been suffering. My complaints were now about to be validated and rewarded. Lyme Disease, Is It Just Another Goose Chase? I finally saw Dr Sam Donta on February 16th of 2002. He diagnosed me with Lyme Disease. He was very thorough and very kind. His testing was simple, and he told me to keep in touch over E-mail and by Phone. The antibiotic prescribed is Tetracycline at 500mgs 3 times per day, and then Clarithromycin, which was quit ironic. I began to power the link between antibiotic use and Lyme, but have not come to any conclusions or sound theories to date. I continued eating correctly, juicing fruits and vegetables, as well as preparing alternative holistic therapies. I have yet to begin these therapies as my doctor wanted me to wait. When he gives the green light I will begin combining my herbal therapies. It should be quite effective now that I have a specific illness to aim at. It's quite possible, but not currently known if the Chronic Fatigue Syndrome and Crohn's Disease I was suffering with, and continue to suffer with are being triggered and caused by the Lyme Disease bacterium which has the ability to mimic these conditions, or if they are each separate conditions. I have begun taking specific antibiotics for Lyme Disease. I must be on treatment for 18 months in total. Within 4-5 months time most patients with Lyme Disease begin to recover - the longer the individual has had the disease, often the longer it takes to recover. I have found the fatigue to be decreasing significantly as time passes. It is also noted that the Crohn's Disease seems to become almost non-existent on days where the Lyme is being overwhelmed by the antibiotics. My hope of course is to be cured of all ailments in 18 months. If the Crohn's Disease and Chronic Fatigue Symptoms disappear it's quite likely Lyme Disease was causing these conditions. As of today whenever the Lyme flares up so too does the Crohn's Disease, but when the Lyme declines so too do the Crohn's Disease symptoms. In fact it all but disappears. It's not uncommon for Lyme Disease to cause Chronic Fatigue Syndrome and other conditions of the immune system, but it is not "always the case". It is a Neurological/Central Nervous System Disease for the most part due to the fact it causes severe inflammation in the brain, spinal column, and nerve tissues throughout the body. It is curable; however complications due to disease progression may be permanent depending on how much damage has been done to joints, nerve tissue and the brain. Although the infection may clear up some symptoms may linger, but with therapies, and exercise it's possible to solve many of these problems. My current Brain Scans show changes to the frontal lobe and temporal lobe. This is not surprising for severe Lyme Disease and long term disease progression. My current understanding is much of this will heal with rehabilitation and my functions mentally and physically should return with hard work. Summary: General Information on Lyme Disease - All Information below provided by Lyme Disease Foundation Inc. Lyme disease (LD) is a multi-system bacterial infection caused by a the spirochete Borrelia burgdoferi (Bb). The pathogen was named in honor of the discoverer and a founding board member of the Lyme Disease Foundation, Willy Burgdorfer, PhD, MD (hon). Research has proven that the bacterium that causes Lyme disease has been in the U.S. for over 100 years. These spirochetes are maintained in nature in the bodies of wild animals and is transmitted from one animal to another through the bite of an infective tick. Humans and pets are incidental hosts to ticks. The body does not maintain a natural immunity to the disease. Thus, a person can be reinfected with the disease on subsequent tick bites. How Is Lyme Disease Transmitted: Lyme disease is transmitted by the bite of an infective tick. Ticks go through four life stages: egg, larva, nymph, and adult. They evolve from one life stage to another by molting Each of the last three stages (the "active" life stages) requires a blood meal. If the tick feeds on an infected host animal, the tick becomes infected. Ticks that transmit Lyme disease can retain the infection throughout their life and are able to transmit the infection to subsequent hosts. This ability to pass the infection on to other hosts makes the tick "infective". Adult ticks generally do not pass the spirochete on to the next generation. Transmitters of the bacteria in North America include: the Western black-legged (Ixodes pacificus) tick in the West, and the black-legged tick (Ixodes scapularis) in the rest of the country. The black-legged tick was temporarily known as the "deer" tick (Ixodes "dammini"). Research is underway to determine if the lone star tick (Amblyomma americanum) may also transmit the infection. Other host-specific ticks may play a minor role in maintaining the infection in nature. This creates a type of "bi-cycle". One cycle being animal-tick-animal feeding and the other cycle being animal-tick-human feeding. The wood rat (Ixodes neotomae) and the rabbit tick (Haemaphysalis leporispalustris) are two examples of ticks that may maintain the infection in nature, but not transmit it to humans. These ticks feed almost exclusively on the hosts mentioned in their common name. In other parts of the world, other ticks are responsible for transmitting the disease to people, such as the sheep tick ( Ixodes ricinus) in Europe, and the Taiga tick ( Ixodes persulcatus) in Asia. These ticks can be anywhere - in the woods, by the seashore, or even in your backyard. While ticks can bite year-round, peak tick season in the northeast is April - September, and on the West coast is November - April. Ticks can survive under a variety of conditions as long as adequate moisture is available. An infective tick with local infection must be attached to the host for a day or more before transmission of Bb occurs. However, a systematically infected tick or improper tick removal may cause transmission of LD much sooner. Tick infection rates vary geographically and from one year to another. How Wide Spread Is Lyme Disease: LD accounts for 90% of vector-borne infections in the U.S. From 1980 to 1998 about 112,000 cases have been reported from 49 states. Montana is the only state having no federally reported cases of Lyme disease. Those patients who have acquired the infection in their state are not yet being reported past the state level. Due to underreporting, the disease case count is likely to be 13 - 15 times higher. However, those are the cases that fit the government narrow case reporting criteria. The true number of cases may be significantly higher. One study estimates that there may be close to 1.5 - 2 million cases of Lyme disease. Evidence of infection has been found on all continents - from positive cultures, to positive antibody tests with clinical signs, to infected ticks on birds. What Are The Symptoms Of Lyme Disease: LD symptoms can imitate other diseases and can be misdiagnosed. Early Localized Disease: Signs and symptoms of Early Local Lyme Disease often starts with flu-like feelings of headache, stiff neck, fever, muscle aches, and fatigue. About 60% of light-skinned patients notice a unique enlarging rash, referred to as erythema migrans (EM), days to weeks after the bite. On dark-skinned people, this rash resembles a bruise. The rash may appear within a day of the bite or as late as a month later. This rash may start as a small, reddish bump about one-half inch in diameter. It may be slightly raised or flat. It soon expands outward, often leaving a clearing (normal flesh color) in the center. It can enlarge to the size of a thumb-print or cover a persons back. To be considered local disease the rash must be at the tick bite site with no other major organ system involvement. A rash occurring at other than the bite site in an indication of Disseminated Lyme Disease. Don't confuse a local reaction to a tick bite, with signs of infection. A small inflamed skin bump or discoloration that develops within hours of a bite and over the next day or two is not likely to be due to infection - but rather a local reaction to the disruption of the skin. Disseminated Lyme Disease Infection: Some people do not notice these early indicators of infection. Early manifestations usually disappear, and disseminated (other organ system involvement) infection may occur. General symptoms alone do not indicate Lyme disease. General Symptoms: Profound fatigue, severe headache, fever(s), severe muscle aches/pain. Brain: Nerve conduction defects (weakness/paralysis of limbs, loss of reflexes, tingling sensations of the extremities - peripheral neuropathy), severe headaches, stiff neck, meningitis, cranial nerve involvement (e.g. change in smell/taste; difficulty chewing, swallowing, or speaking; hoarseness or vocal cord problems; facial paralysis - Bell's palsy; dizziness/fainting; drooping shoulders; inability to turn head; light or sound sensitivity; change in hearing; deviation of eyeball [wandering or lazy eye], drooping eyelid), stroke, abnormal brain waves or seizures, sleep disorders, cognitive changes (memory problems, difficulty in word finding, confusion, decreased concentration, problems with numbers) and, behavioral changes (depression, personality changes). Brain Notes: Other psychiatric manifestations that have been reported in the scientific literature include: panic attacks; disorientation; hallucinations; extreme agitation; impulsive violence, manic, or obsessive behavior; paranoia; schizophrenic-like states, dementia, and eating disorders. Many patients have committed suicide. Eyes: Vision changes, including blindness, retinal damage, optic atrophy, red eye, conjunctivitis, "spots" before eyes, inflammation of various parts of the eye, pain, double vision. Skin: Rash not at the bite site (EM) - This skin discoloration varies in size and shape; usually has rings of varying shades, but can be uniformly discolored; may be hot to the touch or itch; ranges in color from reddish to purple to bruised-looking; and can be necrotic (crusty/oozy). The rash may develop a bull's-eye rash or target look. The shape my be circular, oval, triangular, or a long-thin ragged line. Skin Notes: disseminated skin problems include: lymphocyte, which is a benign nodule or tumor, and acrodermatitis chronica atrophicans (ACA) which is discoloration/degeneration usually of the hands or feet. Heart & Blood Vessels: Irregular beats, heart block, myocarditis, chest pain, vasculitis. Joints: Pain - intermittent or chronic, usually not symmetrical; sometimes swelling; TMJ-like pain in jaw. Liver: Mild liver function abnormalities, Swelling. Lungs:[ Difficulty breathing, pneumonia, Asthma Muscle: Pain, inflammation, cramps, loss of tone. Stomach & Intestines: Nausea, vomiting, diarrhea, loss of appetite, anorexia, inflammation. Spleen: Tenderness, enlargement. Pregancy: Miscarriage, premature birth, stillbirth, and neonatal deaths (rare). Congenital LD has been described in medical literature. It is possible for the bacterium to pass from mother to fetus across the placenta, resulting in congenitally acquired LD. A link between LD and adverse outcomes in pregnancy is under investigation. However, most studies show that mothers who are promptly diagnosed and treated appear to have perfectly normal babies. Nursing women with LD often call to ask us whether they should continue nursing. There has been no proved cases of transmission through human milk. There is research that demonstrates that Bb can be found in the colostrum of infected cows and mice. Animals’ studies have demonstrated that ingestion of Bb can result in infection. Some physicians recommend nursing mothers discard breast milk during active infection. Breast feeding can resume after treatment is completed and the woman becomes symptom-free. The decision to do so should be discussed with your physician. There is no test that can determine if a patient is infected with the LD bacterium and then demonstrate that the patient has become bacterium-free. Therefore, LD is clinical diagnosis, based on signs and symptoms, with the patients travel history to endemic areas and test results being additional pieces of information in the complete picture. No test can "rule-out" Lyme disease. What Laboratory Tests Aid In The Diagnosis of Lyme Disease? Indirectly Tests (Antibody Tests) Antibodies are the immune system's response to "fight off" infection. Tests strive to be both sensitive (detecting any LD antibodies) and specific (detecting just LD antibodies). Test Interpretation: False Negative tests occur due to defects in test sensitivity; too low an antibody level to detect (e.g. they are bound to the bacteria, with too few free-floating; the patient taking antibiotics or other drugs; naturally low antibody production); the bacterium has changed, limiting recognition by the immune system; or bacterial strain variations. False positive tests occur due to test failure or cross-reacting antibodies (e.g. syphilis, periodontal disease, ANA or RF). Types of Tests Titer (ELISA, EIA, IFA) - These tests measure the level of Bb antibodies in fluid. Laboratories use different detection criteria, cut-off points, types of measurements, and reagents. Western blot - This test produces bands indicating the immune system's reactivity to Bb. Laboratories differ in their interpretation and reporting of these bands. Direct Detection Tests: Antigen detection - These tests detect a unique Bb protein in fluid (e.g. urine) of patients. This may be useful for detecting LD in patients taking antibiotics or during symptom flare-up. Polymerase chain reaction (PCR) - This test multiplies the number of Bb DNA to a detectable measurable level. Culturing - Growing the bacterium in culture is difficult and can take months. Staining - Staining of tissue is time consuming and has low yield. The problem is that in Lyme disease there are too few of the Lyme spirochete in the body, and could result in the biopsy having no bacteria. How Is Lyme Disease Treated: Treatment varies and depends on how early a diagnosis is made and the organ system(s) involved. No definitive treatment regimens have been determined, and failures occur with all protocols. Oral antibiotics may be sufficient for early stages of non-disseminated infection. Long-standing or Disseminated Lyme Disease responds best to one or several courses of either oral or intravenous antibiotics for 1-3 years. Tetracycline 500mgs 3 x per day and Biaxen/Plaquenil seem to be the therapy of choice among Lyme Disease specialists currently. Physicians and researchers agree that it is unethical not to treat people with demonstrated, persisting infection. Therefore, some people receive retreatment or longer treatment. About The Lyme Disease Bacterium: The causative agent, Borrelia burgdorferi, is a type of spirochete. Spirochetes are long, thin, spiral-shaped bacteria. Other spirochetes include the causative agents of syphilis, relapsing fever, and gum disease. The bacterium is thousands of times larger than a virus. However, it still requires a powerful microscope to see one. Roughly 1,500 Bb must be laid end to end to equal one inch. About 100,000 of Bb laid side to side would equal one inch. When Bb was first discovered in 1982 it was thought that there was just one strain. Since then, about 100 U.S. and 300 worldwide strains of the bacterium have been discovered. In the mid-1990's genospecies were formed to group the many variations into subcategories. " Borrelia burgdorferi sensu lato" is name given to the overall category. In North America there is just one genospecies variant - Bb sensu stricto. In Europe there are three categories Bb sensu stricto, B. garinii, and B. afzelii. Asia has B. garinii and B. afzelii. Japan has B. japonica and B. miyamoto. These groups are evolving as new research discoveries occur. A new pathogen causing Lyme or "Lyme-like" disease has been reported. While not culturable, it has been named B. lonestari sp. The bacterium is able to move around the body through the bloodstream and between tissue. It can also invade tissue, replicate, and leave the cell - destroying the cell as it emerges. Sometimes, as the bacterium emerges, the cell wall collapses around the bacterium, forming a "cloaking device". This action may aid the bacteria's ability to hide from the immune system response. It is a popular misconception that Lyme disease was discovered in the late 1970's in Lyme, Connecticut. However, medical literature is actually rich with more than a century of writing about the condition, although most of it has been published only in Europe. Where Did Lyme Disease Come From: The first record of a condition associated with Lyme disease dates back to 1883 in Breslau, Germany, where a physician named Alfred Buchwald described a degenerative skin disorder now known as acrodermatitis chronica atrophicans (ACA). In a 1909 meeting of the Swedish Society of Dermatology, where a physician named Arvid Afzelius presented research about an expanding, ring like lesion he had observed. Afzelius published his work 12 years later and speculated that the rash came from the bite of an Ixodes tick. Throughout the early twentieth century, associations were being made among many of the symptoms and signs that constitute Lyme disease. Some of these associations were: joint involvement in patients with late disease (1921), the link between the EM rash and neurological problems (1922), psychiatric symptoms in patients with the EM rash (1930), patients with benign lymphocytomas observed to also have either EM or ACA (1934), and the description of heart involvement that appeared in patients with both the EM rash and arthritic symptoms (1934). By mid-century, physicians were experimenting with still-novel antibiotics and reporting successful results. In 1970, for the first time, an incidence of EM known with certainty to have been acquired in the United States was reported by Rudolph Scrimenti, who diagnosed and treated a patient who had been bitten by a tick while hunting grouse in Wisconsin and acquired the disease. In 1976, the first US case of clustering of this disease was reported by researchers at the Naval Submarine Medical in Southwestern Connecticut. In 1977, physician Allen Steere et al described the first clustering of the disease misdiagnosed as juvenile rheumatoid arthritis. They named this condition 'Lyme arthritis'. In the early 1980's, an entomologist at the United States Rocky Mountain Laboratories of the National Institutes of Health by the name of Willy Burgdorfer, MD, Ph.D. was investigating outbreaks of Rocky Mountain spotted fever. Research scientists Jorge Benach and Edward Bosler, Ph.D. collaborated in the dogged and dangerous work of gathering and testing ticks for disease-causing pathogens. During the course of the research, attention shifted from dog to black-legged ticks and in the fall of 1981, one of the batches of ticks yielded something dramatically new. Burgdorfer noticed an embryonic form of parasite in the body fluid of two of the ticks. Guided by his extensive knowledge of the early scientific writings of European researchers, he undertook a very close inspection of the tick--and found poorly stained, sluggish spirochetes. Within a year, the spirochetes had been named Borrelia burgdorferi (Bb), in his honor, and definitely identified as the causative agent of Lyme disease. Dr. Burgdorfer was the partner in the successful effort to culture the spirochete, along with Alan Barbour, MD. Next came a period of consolidating and expanding of knowledge. After the discovery of Bb and the diseases associated with it, researchers began to learn more about how the infection lodges itself in the body. In 1985, Paul Duray, a Lyme disease researcher, declared that the Lyme disease bacterium disseminates itself through the body early in the course of infection. The prevailing wisdom at the time was that infection was slow to. Duray's findings are now the prevailing thought. Also in 1985, Burgdorfer was able to demonstrate that ticks infected with the Lyme spirochete could be found across the country. In 1988, the LDF was founded and started the major push to bring Lyme disease in the spotlight. It was the effective partnerships among patients, government officials, and researchers that enabled volunteers around the world to bring Lyme disease the attention that has helped make it a household term. For more information on Ticks & Tick Prevention CLICK HERE This post continues on post number 16.