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  • 1. Mid-Atlantic Lyme Disease Resource Center, LLC P.O. Box 1261 Brooklandville, Maryland 21022 Lyme Disease Information - 2007 Introduction... Lyme Borreliosis (the technical name for Lyme Disease) is caused by the spirochete Borrelia burgdorferi and is transmitted from the bite of the Blacklegged Tick, also known as the Deer Tick (Ixodes family). Deer Ticks are so tiny that they are easily mistaken for flecks of dirt, freckles or moles. The Deer Tick has 8 legs (e.g., looks like a “freckle with legs”), and belongs to the spider family. In the nymph stage, it is the size of the period at the end of this sentence; in the adult stage it is about the size of a sesame seed. An engorged female adult Deer Tick can be as large as a kernel of corn, similar to an engorged dog tick. Dog ticks have a horseshoe pattern on their backs. Deer Ticks are darker and smaller with no markings. Where Are Ticks Carrying Lyme Found ?... Ticks like 90% humidity and are active in the Mid-Atlantic region whenever the temperature is above 35 degrees. That means you can get Lyme Disease year round. The ticks prefer shady, moist areas such as the edges of your yard, stone walls, gardens and low growing plants along pathways where they can detect heat and presence of passing animals--potential hosts--mice, deer, dogs, cats, horses, cows, birds and humans. In the spring, Deer Tick nymphs can be found in leaf litter in wooded areas. There they are picked-up by small animals, including birds. Adult ticks cling to tall grass and brush and wait for warm-blooded hosts to pass by. Maryland is a Lyme Endemic Region. This means that the ticks carrying Lyme and other diseases are everywhere (including your backyard and local parks). Is Lyme Disease Really A Problem?... My Doctor Says it’s Rare and Easy to Cure… Lyme and the other tick-borne illnesses (Ehrlichiosis, Babesiosis, Relapsing Fever, Tick-Borne Encephalitis and Rocky Mountain Spotted Fever) are serious, potentially fatal and debilitating diseases that affect livestock, pets and humans. Lyme is by far the most common of these illnesses. There are many more cases of Lyme Disease in Maryland, Virginia and PA than are officially reported. Underreporting is a national problem because state public health officials and the majority of doctors still use unrealistic surveillance criteria to count cases of Lyme and make diagnoses. These criteria were established by the Centers for Disease Control (CDC) in the 1980’s before much was known about Lyme (it was isolated and identified in 1982). Because of this, doctors are unable to report cases of clinical Lyme because such cases may not meet the restrictive CDC surveillance criteria. Worse yet, many doctors still use the reporting criteria as the basis for diagnosis and treatment, even though the CDC has warned doctors that the criteria are to be used for “surveillance purposes only,” [i.e., reporting and counting]. See the CDC web site at www.cdc.gov Lyme and Children: Beware the Masquerade... The youngest victims don’t always present with symptoms accepted by the medical profession as “classic Lyme symptoms” (i.e., bulls-eye rash, arthritis in joints, etc.). Many children (and adults) present with neurologic symptoms early in the course of the illness. Lyme is now known to appear in the Central Nervous System (CNS) within 12 hours of infection. Moreover, because Lyme is a muti-system illness, there are at least 50 different Lyme symptoms listed in current literature. Major Lyme Disease Issues... We cannot stress enough: it is imperative to treat LD with ADEQUATE DOSAGES of the recommended antibiotics EARLY, EARLY, EARLY. With Lyme, the longer you have it, the deeper it gets into your system; the deeper it gets into your system, the longer and more aggressive the treatment must be (see below) to control or eradicate the organism. The longer that Lyme goes untreated (or inadequately treated), the harder it is to cure. Lyme bacteria are spirochetes similar to Syphilis. Like Syphilis, Lyme can become dormant for periods of time (years in some cases), sequester inside of cells and the CNS (including the eye), and change forms during the course of an illness. There are peer-reviewed studies that indicate that Lyme bacteria are able to evade host immune systems and antibiotic effects. There are many strains of Lyme bacteria. Different strains have different antibiotic susceptibilities. You can receive infection with one or more strains from the same tick bite. You can also be co-infected with other tick-borne microbes that may not be affected by antibiotics used in treating Lyme. In some cases, this results in chronic, seemingly incurable infection. This is especially possible if older, simplistic treatment protocols are employed. EDUC ATIO N ACTIO N COM PASSI O N 1
  • 2. Mid-Atlantic Lyme Disease Resource Center, LLC P.O. Box 1261 Brooklandville, Maryland 21022 Diagnosis and Treatment… If you are bitten, become infected and get a bulls-eye rash, that is all you need for a doctor to confirm (acute) early Lyme infection. According to the experts, it is the only symptom that is 100% diagnostic for the disease. If you have the rash, take photos of it if at all possible. Don’t wait to see if the rash goes away on its own or for the on-set of symptoms. Don’t wait for unreliable lab tests to come back. Current blood tests (ELISA/Western Blot) can provide false negative results approximately 30-50% of the time. A positive test indicates exposure only, not current infection. Early treatment with antibiotics may abort your body’s immune (antibody) response and result in seronegativity (i.e., you have a false negative test result even though you have the disease). Serological tests do not become reactive until several weeks post- infection (some never do). We do not have a lab in Maryland that can perform sensitive, state-of-the-art tests to assist in diagnosis if you do not have a rash. Only 33% of those infected get a rash; most do not remember being bitten by a tick. Because of the unreliable state of current testing, the CDC says that a diagnosis of Lyme Disease must be based on clinical evidence with tests playing a supporting role. Not all labs can be trusted to provide quality Lyme tests. The labs indicated below offer state-of-the art testing. Give them a call. What About the “Bulls-Eye” and Other Rashes... Rashes typically appear 3 days to 3 months following a bite. The rash does not always occur at the site of the bite. There are MANY variations of rash. The rash will go away if untreated, but the infection can hide for months and will be less likely to be curable if effective antibiotic treatment is withheld or not given long enough during the early phase. According to the experts, optimal treatment when just a rash is present is 4-6 weeks of oral antibiotic therapy. Check out the rash photos at the Lyme Disease Foundation website: www.lyme.org . Chronic Lyme Disease Is a Well-Documented Reality... Chronic LD affects some or many of the body’s systems and does not necessarily test positive with current lab tests. Victims may require months to years of antibiotic treatment, depending on response and effectiveness. Beware of the so- called “Post Lyme Syndrome” (“PLS”) given as an explanation for continued symptoms after treatment. At this time, PLS is purely a hypothetical “condition.” It is used by the insurance industry to justify the denial of treatment benefits to Lyme patients who receive the “standard” 21 - 28 days of antibiotics, yet are still symptomatic. See, “A Proposal for the Reliable Culture of Borrelia burgdorferi from Patients with Chronic Lyme Disease, Even from Those Previously Aggressively Treated,” Infection, Vol. 26, p. 18-21 (1998). See also the information compiled by the Lyme Disease Association at www.lymediseaseassociation.org Minimization of LD Symptoms and Treatment... It is unfortunate but true that many doctors minimize the strength, prevalence and impact of the tiny Lyme microbe on individuals, families and communities. Chronic Lyme is often misdiagnosed or treated inadequately due to incompetence or lack of expected clinical symptoms, slow response or temporary worsening with effective treatment (the Jarisch-Herxheimer Reaction, see below). Many in the medical profession do not know what a Lyme Herxheimer is or how it manifests. LD patients presenting a classic spirochetal Herxheimer reaction upon initiation of effective antibiotic therapy are often misdiagnosed as having an “allergic reaction to antibiotics” or told that they are “depressed/anxious” and need to see a mental health professional. This phenomenon of denial and ignorance is compounded by the politics and bias surrounding Lyme Disease research and treatment. What is the Likelihood of Becoming Infected... Timely and proper removal of the tick is critical. The only studies available suggest that if a tick is properly removed within 24 hours of the bite, infection is usually unlikely. After that, the likelihood increases, if it’s been embedded 48 hours or longer or is not removed intact. Allowing the contents of a tick (i.e., the spirochetes) to come into contact with skin or a bite wound will significantly increase the chances of transmission. An adult Deer Tick has a greater probability of carrying the bacteria. These ticks are larger and easier to spot, but some authorities advise that infection from an embedded adult tick can be transmitted in as little as four hours. Do not crush or separate a deeply embedded tick. Get it removed surgically by a medical professional! How Should I Remove an Attached Tick... EDUC ATIO N ACTIO N COM PASSI O N 2
  • 3. Mid-Atlantic Lyme Disease Resource Center, LLC P.O. Box 1261 Brooklandville, Maryland 21022 Despite what you may have heard, it is very unwise and risky to apply a chemical or heat to a tick to get it to “back out.” Such action can cause the tick to regurgitate infectious bacteria into your bloodstream. It is best to avoid unnecessary movement of the tick and use a pair of fine tweezers to grasp the tick as closely to the skin as possible and gently pull upwards to remove it. Wash the site and put on an antibiotic ointment. Record the site and location and save the tick as described below. If any part of the tick remains embedded, you call your physician immediately for further advice. Do Yourself a Favor and Save the Tick for Testing... Your best defense against Lyme Disease is early detection by testing the tick that bit you! Get it tested as soon as possible, especially if the time it was embedded is unknown and any engorgement is observed or if the tick was improperly removed or manipulated excessively. The tick should be placed in a plastic bag with a blade of grass or other source of moisture. It should not be killed if it is still alive. As of this writing, Maryland does not offer commercial tick testing. Instead, send your tick specimen to: UCONN Diagnostic Testing Laboratories, 61 N. Eagleville Rd., U-203, Storrs, CT 06269-3203 Tel. 860-486-0808; Fax. 860-486-2737. Also, check out Medical Diagnostic Laboratories (www.mdlab.com) in NJ (877.269.0900) Igenex Lab in California (800-832-3200) also does excellent testing; they have the only commercially available Lyme Urine Antigen test. See their web page at: www.igenex.com Beware of the tendency of local practitioners to opt for the easiest/cheapest lab for testing. A few extra dollars spent here is worth the cost. Symptoms of Lyme Disease... There are many different symptoms and courses that Lyme can present. Lyme mimics many syndromes and illnesses, including Multiple Sclerosis (many people have been misdiagnosed with MS when they actually had Lyme), Chronic Fatigue Syndrome, Fibromyalgia (is a condition thought to be caused by, among other things, Lyme Disease), Alzheimer’s, Depression, Anxiety, ADD, ADHD, Rheumatoid Arthritis, Lupus and more. See, the websites mentioned above and the publications noted below for an extensive list of them. Lyme and Pregnancy... The Lyme infection can be transmitted during pregnancy and perhaps lactation. Fetal death is well documented. Child- bearing/nursing women who suspect being infected should not delay seeking treatment. Lyme Disease can be transmitted through blood transfusions and organ transplants; thus, anyone with Lyme should NOT donate blood or organs. Other possible means of transmission: from the urine of infected animals and contact with infected blood of such animals, including deer meat (cooking, however, kills the bacteria). What Happens During Treatment... The information presented below is based on our own experience, reports from scores of Lyme patients, and a compilation of peer reviewed, current research published in professional journals and on the internet. We recommend that you read Denise Lang’s, Coping With Lyme Disease (1997 ed.); Karen Forschner’s, Everything You Need To Know About Lyme Disease (1997); and Polly Murray’s, The Widening Circle. On-line, check out the Lyme Disease Foundation’s (LDF) web site at www.lyme.org and the Lyme Disease Network at www.lymenet.org . A 24 hour hotline is provided by LDF at 800-886-LYME. If I Have Disseminated or Later Stage LD, What Can I Expect ?... No one knows. That’s the answer. No one knows how quickly you’ll start feeling better, or what you might have to go through to get there. A lot of people simply start to feel better quickly and never realize that Lyme Disease can be traumatic for others. For many people though, it gets worse before it gets better. It can, in fact, get a lot worse before it gets better. It depends on how long you’ve had it, how much of the bacteria has built up, what strain you’ve got, co- infection with other tick-borne microbes and many other factors. The only way to find out is to start treatment. If you’re one of the many lucky people who recover without complications, Great! If not, then you may find some very useful information in this text. EDUC ATIO N ACTIO N COM PASSI O N 3
  • 4. Mid-Atlantic Lyme Disease Resource Center, LLC P.O. Box 1261 Brooklandville, Maryland 21022 The Lyme bacteria give off chemical toxins. When the antibiotics start killing them, the toxin levels in your body will soar and the symptoms can become intense. Just as with the effective treatment of Syphilis, this is called the Jarisch- Herxheimer Reaction, or Herx for short. Physical symptoms include joint/muscle pain, numbness, swollen joints, a feeling of being on fire, tremors, and a myriad of others if internal organs are significantly affected. The toxins affect your mind as well. Typical symptoms include insomnia, confusion, disorientation, memory loss, depression, anxiety and panic attacks. These will all go away as you get well! As if the toxin effects weren’t enough, another fact about Lyme bacteria is that they grow and reproduce slowly. At first, that may seem like a good thing, except that the antibiotics are generally able to kill them only during certain stages of their life cycle. The end result being that it takes a long time to get well. Usually months. There have been cases of “miracle” cures in just a couple weeks, but these are rather rare. Just don’t give up hope! Keep at it! Keep trying! It takes a long time, but being happy and healthy again is worth it! The Jarisch-Herxheimer Reaction... When you first start on effective antibiotics you’ll be in for quite an unpleasant surprise. Within a day or two you’ll feel like you’ve been hit by a fully loaded freight train. Your symptoms, including ones you didn’t even know you had, will flare up intensely. Try hard to tough it out. But if you find that you absolutely positively can’t, and this is not too unusual, ask your doctor about lowering the dose for a while, or pulsing on and off until you get through the worst of it. Sticking on the medications as prescribed, always taking them right on time, is your best bet for getting through it as quickly as possible. Don’t give those nasty little bacteria an inch! This can be really tough, because it takes at least a few weeks, often several months and sometimes longer to get through the brutally hard part. If, when you start your antibiotics, your symptoms don’t flare severely (including ones you didn’t know you had), then you may have a strain that is resistant to that particular antibiotic. This is one reason that two antibiotics are often used at the same time. It is a judgment call between you and your doctor as to whether the antibiotics are effective and what might need to be done if they aren’t. Or perhaps it’s just that you’re one of the lucky people who get better without all the pain some folks have to go through. Which set of symptoms, the physical or the psychological, will be the most difficult to handle is entirely up to the individual. Are you more physically oriented? Or are you a thinker? Some people are so happy-go-lucky and full of faith that nothing at all bothers them. In fact many people are. You can be like them too. Just don’t bother to worry about it! Focus on things you like to do. You’re on the right road. The road to being happy, healthy and normal again! Is it Contagious? The short answer is: no one knows. Spouses and siblings tend to travel to the same places, so most likely, family infections are caused by infectious bites by different ticks. The long answer is: since it’s a blood-borne disease, as long as you don’t go around biting people and bleeding on them, then no, it’s not. Whether it is possible to transmit Lyme through sexual contact is unknown. As always though, better safe than sorry. A few annoyances you may encounter along the way if you have Disseminated or Later Stage LD, and should be made aware of: 1. Confusion/Disorientation. Your short-term memory will likely be taking a nice long vacation. You may find yourself confused about where you are and what you’re doing every time the scenery changes. Like when walking from one room to another, or driving (DON’T! If you find yourself suffering from confusion and forgetfulness, then you may well be a hazard to yourself and others on the road). Sometimes even when just sitting or lying around doing nothing. It could also be even more intense, with temporary bouts of amnesia. But it’s a fact of life that vacations do end. This one tends to be about the most disconcerting psychological symptom for most people. Again though, it’s caused by the toxin release from the bacteria. It will get better and eventually go away! 2. Numbness. Various parts of your body may go numb for a period of time. Quite often it’s just for a day or so, but can also last for many weeks, until enough of the bacteria in that location have been killed and the toxin level drops. Don’t panic! They should all come back! (The numb body parts, that is!) They’ll eventually switch from numb to painful, and then finally to normal. That being said, keep in mind that this disease can attack the nervous system and wreak havoc. Lyme Meningitis, Encephalitis and Encephalopathy can cause permanent neurological damage (e.g., paralysis, blindness and neuropathy). EDUC ATIO N ACTIO N COM PASSI O N 4
  • 5. Mid-Atlantic Lyme Disease Resource Center, LLC P.O. Box 1261 Brooklandville, Maryland 21022 3. Pain. Same as 2), but may be sporadic or constant pain instead of numbness. Pain can range from being simply annoying to unbearable. One of the unusual features of the Lyme Herx is that your entire body may be hurting during a bacterial die-off. Your skin may actually hurt to be touched. Chronic pain is a serious matter because it can affect treatment compliance and cause depression leading to suicidal ideation and even attempts. Your pain needs to be discussed with and treated by your Doctor. There are many ways to deal with Lyme pain, hence no need for unnecessary suffering. 4. It’s In More Places Than You Know. While you are on effective antibiotics the bacteria should not be spreading. Never had a problem with your back, but it hurts now? Forearms maybe? Wrists? They hurt now because the bacteria were there all along, and now that they’re dying they’re releasing toxins. It’s toxin from the dying bacteria that causes the numbness and pain. Dead bacteria are a good thing! 5. Insomnia. And not just at night either. You may find it impossible to nap during the day at all. You may get to enjoy every last minute of the worst part. As the toxin levels fall though, you’ll be able to sleep better. 6. Hallucinations and Voices. These can occur during times when your mind and body are exhausted but the toxins won’t let you sleep. You may be trying to rest, but your brain gets stuck halfway between sleep and awake, dreams and reality mix. Better sleep at night, along with less activity during the day should help these symptoms disappear. Ask your doctor about sleeping aids you can use if necessary. However, if you get these symptoms while you’re awake and have had reasonable sleep, consult your doctor immediately. 7. Tremors, Shakes, and Spasms. Can occur in various places to varying degrees. 8. Sweats, Hot, Cold, Day & Night. Get used to them. Drink plenty of water so you don’t become dehydrated. Lots of water helps flush your system of toxins as well. Keep a water bottle handy throughout the day. Take your temperature in the a.m. and p.m. and record the data in your chart (see below). Low-grade fevers are common. 9. Fireworks, Popcorn or Pin-cushion Pains. These tend to feel like someone has picked a part of your body and decided to jab it with a pin a few times. Then they go and pick another spot. These are probably just irritations of nerves, or perhaps bacteria dying inside a nerve cell itself. You might notice that they tend to occur in your most affected areas and that more effective antibiotics cause more of them. It is now recognized that the bacteria seem to prefer taking up residence in nerve cells, the brain and other parts of the CNS. 10. Heart Palpitations or Irregularities. Notify your doctor immediately to determine if the irregularities are severe enough to be dangerous. In some cases, people have been put on a temporary pacemaker until the worst of the symptoms have disappeared. 11. Dizziness and Vertigo. It’s everywhere else, why be surprised that it’s in your ears (or brainstem)? Symptoms here can range from a feeling of “walking on Jello” to complete loss of orientation. Persistent vertigo can be serious. 12. Temporary Amnesia. Really this is just an extension of memory loss symptoms, except that instead of just losing your short-term memory, mid and sometimes long-term memory can go for a hike as well. These symptoms can last anywhere from just a few minutes to a few weeks, and will probably only occur during the first month of treatment. MISCELLANEOUS & BIZARRE... 1. Aliens Under My Skin. Usually felt in the forearms or shins (but can occur anywhere), this feels like little turtle-shaped aliens crawling around in the affected area. 2. Sudden Bouts of Weakness & Symptom Flares. Your immune system is fighting the bacteria with the antibiotics. But your natural defenses aren’t always a steady, predictable stream. Occasionally, and even frequently during the first cycle or two, your body will attack. Sometimes with a vengeance that will literally leave your knees week and you panting for breath. In extreme cases, this can cause fainting. This can be very disconcerting if you’re not expecting it. As long as your heart rate and blood pressure are OK, then you’re probably fine. Go over your drug allergy checklist and consult your doctor if you think it might be a delayed reaction to the antibiotics. Normally, this feeling will drop in intensity within a few minutes. 3. Headaches. Can range from none at all if you’re really lucky, to some really intense head-splitters. Do whatever you can to survive them. 4. Disconnection. Close your eyes, where is your arm? OK, look at it now. Doesn’t really feel like it is there, does it? The extreme of this symptom is a complete out-of-body experience. As toxin levels fall, you should feel more EDUC ATIO N ACTIO N COM PASSI O N 5
  • 6. Mid-Atlantic Lyme Disease Resource Center, LLC P.O. Box 1261 Brooklandville, Maryland 21022 connected to your body. And there you were thinking you were just getting really good at your Yoga exercises… 5. Panic Attacks. You don’t want to get these, really, you don’t. It’s a feeling of, “Oh my God I’m going to be like this forever; I can’t take it; please somebody just kill me and get it over with…” The only possible good thing about this symptom is that it goes away. 6. Bright Colors/Blurred Vision. Your pupils may dilate a bit. Indeed, you may find yourself wearing sunglasses, indoors! Vision may also blur, especially during a Herx. 7. Hypersensitive Hearing. Your ears may become hypersensitive to sound. In extreme cases, sounds, even very quiet ones, can become painful. 8. Mood Swings/Irritability. Again, all due to the toxin’s effect on your mind. These will clear up as you get well. These symptoms can be especially difficult for those around you to deal with. Make sure they know it’s not really you! 9. Yo-Yo. You’ll be feeling like one. Up one minute, down the next. You might wake up feeling great one day, only to find that a couple hours later you’re back feeling horrible. Up, down, up, down, all around. Slowly, month after month, the downs will stop being quite so low, and eventually go away. 10. Whatever Else. Everyone is different, and the disease is quite well known these days for just how differently it affects different people. Any other significant symptoms that you are concerned about should be discussed with your doctor. Helpful Hints... 1. You may need help to get through this. You should not be left alone for long periods of time during the initial stages of recovery. Someone needs to be around to help encourage and reassure you along your rough road back to wellness. Your mind will not be working properly, and it’s easy to become confused, terrified and discouraged. Make sure you have someone to talk to. Just a phone call can help tremendously! Emotional release can be good for you! Rare are the ones who can make the journey back to wellness without a few breakdowns along the way. Call around, ask around, find your local Lyme Disease Support Groups. Talk to them. That’s why they’re there. They want to help! 2. Eat! When you finally get through this, you’d certainly like to enjoy life again as soon as possible, wouldn’t you? Well you can’t do that if you’re a shriveled-up little mess. Solid food is best, but may prove difficult for awhile. Liquid foods like “Ensure Plus” and “Instant Breakfast” can help keep your calorie intake up. Don’t forget your basic “Multi-vitamin & Minerals” either. And eating does much more than just keep your weight up. It provides energy for your immune system, so it can fight too, for all the healing that has to take place and energy to help your body process the toxins out. Eat, and you’ll be happy and healthy again that much sooner. Avoid refined sugar products to keep yeast infections to a minimum. A healthful, low fat diet (e.g., one of the arthritis diets) is recommended by many experts. 3. Move and Stretch. The worst thing you can do is just sit or lie around all day. Lyme Disease is a deep tissue bug as well as not-so-deep tissue. It likes to hide and live in places that are hard to reach, both for your body and the antibiotics. Stretching and moving around does a number of things such as providing circulation for your immune system, flushing toxins out, circulating antibiotics in, and generally helps keep the hard-to-reach places from getting any harder to reach. By getting some circulation going and flushing toxins out, you help prevent toxic build-up and subsequent possible damage. So if it hurts, stretch it (gently) move it around, get some circulation in there! You should gently stretch everything from your nose to your toes at least once an hour while you’re awake. Go for a short walk… Even just up and down the driveway, or around the living room a few times will do a world of good. This is extremely important during the first few weeks or so when toxin levels will skyrocket! 4. Exercise. When feeling better, an exercise program is essential. Your body needs to be worked out to avoid the deterioration that will set in if you become a couch potato. If you are in poor physical shape, begin slowly. A consultation with a professional trainer is worth the expense. 5. Sleeping Aids. Do not use sleeping aids during the first few weeks or so. As long as you have extreme pain or numbness somewhere that needs to be moved around occasionally you’re better off rolling around and tossing and turning all night. Once you feel like you can go the night without accumulating severe pain somewhere, then non- antihistamine sleeping medications are OK. Naturally, use as little as possible. You do need sleep, but you EDUC ATIO N ACTIO N COM PASSI O N 6
  • 7. Mid-Atlantic Lyme Disease Resource Center, LLC P.O. Box 1261 Brooklandville, Maryland 21022 don’t want toxin damage. 6. Take Your Medication On Time, Every Time, Religiously. Some Lyme bacteria take days to kill. A missed dose may let them recover and start the clock all over again. Unless, of course, you like suffering… 7. Don’t Stop Once You Feel Good. Lyme Disease is very slow growing, but the longer you’ve had it the deeper into your system it gets. Deep enough such that even the “instant kill” family of cephalosporin antibiotics takes time to kill it. Thus it is generally good practice for disseminated Lyme patients to continue on effective antibiotics for a number of months after symptoms have (seemingly) disappeared. Taking medication when you feel good can be an annoyance, but when you consider what you’re going through now, do you really want to do it again? 8. Lyme Disease Doesn’t Just Grow Outside Cells. It tends to enter inside your cells and grow there too. Not all antibiotics can penetrate cells to effectively kill the bacteria there. Fortunately, there are a number that can: Suprax, Flagyl and Biaxin for example. Consider some time spent on these to kill any bacteria that might be living in your cells. 9. Know the Signs of a Drug Reaction for those drugs you haven’t had before. Sometimes it can be difficult to distinguish between a drug reaction and standard Lyme symptoms. Discuss any concerns or unusual symptoms with your doctor. 10. Anti-inflammatory and Pain Medication. Inflammation is your body’s way of triggering increased circulation to affected areas. Circulation is what brings the antibiotics in to where they need to go and takes the toxins out. Pain is your body’s way of saying “Hey! Move this part around a bit!” You may actually find that anti- inflammatory meds, during the first month or so of treatment, will actually tend to make joint pains worse. Once past the hard part though, a bit of anti-inflammatory and pain medication is beneficial. Avoid steroid drugs unless your doctor feels there is no alternative for an acute situation. Steroids suppress the immune system and are hazardous to Lyme patients unless treatment is limited to very short periods. Your recovery depends on you taking charge and doing everything possible to boost your immune system! 11. Contact Lenses. Take them out! Never nap or sleep with your contacts in! It is likely that the bacteria are in your eyes as well as everywhere else. A die-off in your eyes can raise the local toxin levels, but with your contacts in your body is hindered in flushing it away. The build-up may cause damage to your eyes. Better safe than sorry! Dig up that old pair of glasses until the worst of Herx reactions have passed. 12. Depression. Nobody likes feeling depressed. Problem is that a fair number of people just get that way after fighting the disease for a seeming eternity and still not feeling a whole lot better. Try to find things you can do to occupy yourself and keep your mind off it. Do whatever you can, naturally, to lift your spirits and keep them up. Failing that, ask your doctor for a little help. Make sure to avoid anti-depressants that can add to insomnia! 13. B-Complex Vitamins. These have been shown to significantly help the nervous system, especially B-12. B Vitamins have been shown to help the brain repair and protect itself from toxin damage. 14. Injuries. Try to avoid them. Evidence suggests that the Lyme bacteria thrive on injured body parts. Bruises, sprains, etc, are a feast with an open, all-you-can-eat invitation. 15. Exercise. Gentle stretching and low-level workouts are OK and essential for recovery. But remember that strenuous exercise and hard workouts are actually controlled injury… and injury feeds the bacteria. 16. Yeast Infections – in throat and/or digestive tract. Some antibiotics are more prone than others to causing yeast infections by killing off all your good bacteria. Your doctor should question you about sore throats and intestinal problems each time you visit. These infections can be cured with yet more drugs, or avoided altogether by simply asking your pharmacist for “good tummy bacteria.” Lactobacillus Acidophilus (they’re non-prescription). Live culture yogurt does essentially the same thing as it contains the same live bacteria. In either case, make sure to rinse your mouth and throat with water immediately after you eat or drink anything, then swish a bit of your good bacteria around in your mouth and swallow. Gargling with saltwater regularly can also bring oral yeast infections under control. 17. Antihistamines. Not when on one of the tetracycline family of antibiotics (e.g., Doxycycline). Your immune system is one of the biggest factors in your recovery; one of the big superpowers in the war against the disease. The antibiotics will kill some percentage of the bacteria each cycle while your immune system kills off the ones that were weakened. Together, the antibiotics and your body create a team to defeat the bacteria. Antihistamines, like Benadryl, turn off your immune system. The tetracycline family of antibiotics does not actually kill the bacteria, EDUC ATIO N ACTIO N COM PASSI O N 7
  • 8. Mid-Atlantic Lyme Disease Resource Center, LLC P.O. Box 1261 Brooklandville, Maryland 21022 but rather just stops them from growing and relies on your immune system to kill them. That being said, however, some antihistamines (used briefly) can help moderate pain and burning sensations during symptom flares and Herx reactions. 18. Natural Herbs and Such. A stroll through your local herbal and natural foods shop will provide you with an amazing array of items that claim to do all sorts of good things. Anything that says “boosts immune system” might be a good idea. Purely optional, although a number of herbal concoctions have actually been shown to help as they claim. 19. Caffeine. Suppresses the immune system, which is bad. Give up that morning coffee and that afternoon Coke. 20. Alcohol. Worse for you than caffeine. Unless you just want to be sick longer, no alcohol! 21. Smoking. Haven’t you been lectured about this enough yet? Now would be a really good time to quit. 22. Rest. You’re going to need a lot of it. Even after you begin to feel better, remember your body is still fighting off a rather nasty infection. Don’t overdo it. Without sufficient rest, recovery just takes longer. 23. Hot drinks. Let them cool off. Hot fluids tend to make the dead layers of cells on your tongue rather thick to protect from scalding heat. This means more stuff for yeast infections to grow in. 24. Co-infection. Make sure you get checked for Ehrlichea and Babesia, which are also tick-borne. The labs mentioned above can provide your doctor with a tick-borne pathogen screen that will test for these diseases. 25. Vitamin C & Magnesium. Of course, helps your immune system and aids healing. 26. Zinc. No more than 100mg per day. Helps your immune system. 27. Co-Q10. A naturally occurring enzyme in healthy people. Lyme patients need to take their body weight in milligrams daily until exercising regularly and feeling well. Helps heart muscle and lessens fatigue. 28. Multi-Vitamin. Essential to keep your immune system pumped up. Check the local health food store. 29. Low Body Temperature. If you feel cold, you probably are. Try to keep your temperature above 98F (oral), as a number of hormones, chemicals, etc. don’t work correctly if your temperature is consistently low. Many Lyme patients report a lower than 98.6F “normal” body temperature. In fact, you may have a “Lyme Fever” at what used to be your “normal” temperature. Make a chart of your symptoms! Get some graph paper, on the right-hand column list the severity of your symptoms and various affected systems. Across the top, number the days. Each day, fill in the appropriate square with the severity of your symptoms. Hurts like crazy? Fill that square in. Hurts just a little? Mark that square. Now you have a record. With this record, you can help you and your doctor figure out possible cycles, what to expect and when to expect it. Instead of being at the mercy of the disease, waking up each morning and wondering, “what’s the torture of the day going to be?” or wondering, “when is it going to end ?,” you could be looking at your chart and figuring our your cycle. Of course, you still have to map the first one, but from there on you’re not just blindly muddling along! Typical, Uncomplicated Recovery. Before starting your antibiotics you might find yourself feeling pretty bad, or at least not very good. Once you start though: e.g. , JULY 1 2 3 4 5 6 7 8 9 10, etc. Xx Oh my God, I’m gonna die. (Numbness, Severe Pain, Nausea, etc.) xx Ugh, I feel horrible. (Moderate Pain, Dizziness, etc.) xx Feeling bad. (Less Pain, Moderate Fatigue, etc.) Hey, I feel much better. (Mild Symptoms, etc.) xx Wow! I feel pretty good! Symptoms gone! This chart assumes many things, mostly that nothing goes wrong, that the choice of therapy is correct from the start, etc… It is intended to be an example of how a typical recovery might chart. Sometimes interpreting your chart can be difficult. For instance, some body parts may feel fine during the first month or two, only to become painful later on. Physical symptoms that started out painful should show themselves fading away with each cycle. Basic energy level should rise each month, although there may only be a slight increase between the first two cycles. Neuro-symptoms EDUC ATIO N ACTIO N COM PASSI O N 8
  • 9. Mid-Atlantic Lyme Disease Resource Center, LLC P.O. Box 1261 Brooklandville, Maryland 21022 should also improve slightly each month, but they will be the last ones to finally clear up. The Lyme Disease Cycle... In the human host, Lyme bacteria appear to stick tightly to their reproductive cycles. Corresponding symptom flare cycles tend to be about 21 days in men and 30 days in women. If your symptoms don’t appear to be going down with each cycle, then consult your doctor about increasing antibiotic levels, adding another, switching, or whatever attack plan may be suggested. There are Many Different Strains of Lyme Bacteria... Fortunately there is a variety of effective antibiotics. The trick is to find the antibiotics that your strain (or strains--you might have more than one) is susceptible to and that your body will tolerate in high doses. This can be extremely discouraging--to spend weeks or months on a particular antibiotic, only to figure out that it isn’t working. This is one reason that Lyme Disease is sometimes treated with two antibiotics at the same time. Another is that teaming up provides a much higher kill rate. If the first set of antibiotics doesn’t seem to be doing much, don’t be afraid to ask your doctor for some trials of others. Try each one for 7-10 days. Record exactly how you feel each day. If you are still infected and are carrying a bacteria load, effective antibiotics should cause your symptoms to flare, followed over the next few days by gradual clearing as bacteria are killed and eliminated. Be careful not to confuse symptom flares with an allergic reaction to medications. Consult with your doctor frequently for your best choice. Antibiotics Dosage and Duration... Typical bacteria have very short reproductive cycles, usually measured in hours or minutes. This means that an antibiotic given at a standard dose to produce an effective 10-20% kill rate can kill a typical infection in a few days. With each cycle the antibiotic kills some percentage of whatever bacteria are left. When the numbers get low enough, your body cleans up the stragglers, thus keeping the “percentage of what’s left” from becoming one of those “limits that never reach zero” problems you dreaded back in High School Algebra. The Lyme bacteria behave the same way. With each cycle the standard dose of antibiotics kills some percentage of whatever is there. Except that the Lyme bacteria have a cycle time measured in weeks! (3-4)—As a result, it could theoretically take years to kill the infection at standard rates! Experts in the field suggest that antibiotics be dosed quite high, and often combined, in order to achieve the highest kill rate possible without killing the patient (you) in the process. Hyperbaric Oxygen Treatments... The use of HBO as an adjunctive, non-invasive therapy in LD treatment is growing in popularity. The first studies are just being published. Basically, the theory behind HBO therapy is that oxygen is toxic to Lyme bacteria. By flooding the body with large doses of oxygen under pressure, the bacteria can be forced out of cells, tissues and other hard to reach places into the bloodstream where the antibiotics and immune system can kill them. Get on With Your Life... One of the best things you can do for yourself is to simply get on with your life. This can be difficult during the initial stages of recovery, but do what you can. Once you start feeling better though, it will help your overall attitude tremendously to simply start doing what you can to get back to a normal, healthy lifestyle. Each cycle you should feel a little better, and be that much closer. Keep taking your medication and filling out your chart, but otherwise try to ignore the disease and get on with your life! Go have some fun! Copyright 1998 – 2008. Mid-Atlantic Lyme Disease Resource Center, LLC. All rights reserved. However, if this paper has helped you, please feel free to copy and pass along to another patient, doctor or friend! EDUC ATIO N ACTIO N COM PASSI O N 9

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