Reprinted from a 2007 newsletter
What lurks beneath the camouflage of an outdoor leaf pile might surprise you.
You’ve been there—camping, hiking, horseback riding, paint balling, whatever your outdoor preference. As you tediously scrape off the biodegrading gelatinous goo stuck to your gear, your boots and every article of clothing, you wonder what else you may have missed. A good hot shower after playing adventurer-in-the-woods is the best you can do for yourself, right? There is another key piece of equipment that should be standard gear for any outdoor adventure, and that is your eyes and the eyes of your fellow companions.
From May through October, in all fifty states (and other parts of the world), tiny voracious eight-legged critters are crawling, nearly undetected, and right under your feet. And like tiny dive-bombers, they occasionally drop out of treetops onto your head and shoulders, looking for a quick blood meal like you. Their sci-fi sounding name is Ixodes, (Ick-zoe-deez), but you probably know them as the common tick. Wood tick, deer tick, lone-star tick, dog-tick, whatever the name, they are ugly, stealthy, and definitely packing.
What you don’t know about them can ruin your life. Lyme-infecting tick bites happen to an estimated 200,000 people every single year. Most bites go undetected because these little buggers, in their nymph (larval) state, are no larger than the dot at the end of this sentence. Pretty scary, right—but they don’t have to be.
Since the bite is painless, you may not know you have been bitten. Ticks often attach in obscure places like the nape of the neck, behind the ears, on the scalp, or under your arms. Children are more susceptible to tick bites and so are ground-hugging outdoor adventurers, because they are closer to the ground where the creepy crawlers live. Pets can also bring these arachnids (members of the spider family) into your home.
But the good news is that, as the season progresses, ticks grow larger and more easily seen. If you do find a tick attached to yourself, it can easily be removed by grasping the bug by its head, as close to your skin’s surface as possible with a tweezers, and gently but firmly pulling the bug out of your skin. Save the insect in a freezer bag so that it can be tested for Lyme disease and other nasty infections ticks usually harbor.
People think smothering ticks or burning them with a match are good removal methods, but in reality, that is not only harmful to the tick, but to you. Ticks tend to burp up their disease-carrying stomach contents when disturbed in this manner, so pulling them out with a tweezers by their head is the safest way to remove them and prevent them from transferring infection.
Statistics show it takes less than 24 hours for ticks to transmit Lyme disease. Assume that if a tick is attached, you could be exposed to Lyme and other co-infections. Contact your doctor as soon as you are bitten. This is important because early treatment prevents Lyme from invading your body, and the bug that causes Lyme can be coughed into your blood as soon as the tick begins feeding—yum.
The spirochete that transmits Lyme, Borrelia burgdorferi (Bb), lives in the saliva and stomach of the tick. Bb has an affinity for your brain and central nervous system and will make a beeline for them as soon as they enter your blood stream, often within hours or days. Once there, they are difficult to eradicate.
These crafty little bugs have many forms and change their “camo” as often as you can reload a paint gun (or even your shoes), so its best to hit them when they are easily treatable: as soon as they are present. This is also your best opportunity to defeat these stealthy foes.
The most common symptoms occurring with Lyme disease are headaches, flu-like symptoms, nausea and stomach problems. Besides Lyme, ticks often carry other infectious diseases, called co-infections, and not all ticks carry Lyme. In Lyme infection, only about one-third of the time, a rash on or near the bite site occurs. Often rashes are ring or bulls-eye shaped, with a clearing around the middle or central part. Other types of rashes may appear, but often do not. Joint aches and pains, problems with extreme fatigue and memory also occur at the onset, as can flu symptoms, hallucinations and high fevers.
Symptoms can present hours, days or weeks after a tick bite, so be on the lookout for any physical symptoms, especially a sudden summer “flu”. Lyme is called “the great imitator” because its symptoms mirror many illnesses, like fibromyalgia, multiple sclerosis, ALS, Parkinson’s disease, and others. Sounds nasty, doesn’t it?
If Lyme disease is not diagnosed and treated quickly, it can lead to permanent disability, paralysis, stroke, cognitive problems, blindness, psychiatric illness, and even death. Lyme attacks every organ system in the body and is a multi-system infection. The co-infections that accompany the tick bite have additional symptoms of their own, but are also treatable with various antibiotics.
Finding a Lyme-literate physician (a doctor who knows how to diagnose and treat Lyme) is critical at the onset of illness. Contact on-line Lyme support groups in your state to ask for a physician referral. You can request antibiotics from your doctor if you suspect Lyme disease, even if you show only one or two clinical symptoms, but may find it hard to obtain any as new “guidelines” published by the IDSA are attempting to make diagnosis and treatment of Lyme disease difficult, if not impossible for doctors who follow these “guidelines.”
For victims of Lyme (those in the Lyme “community”), it is well known that Lyme disease is difficult to diagnose, treat, and eradicate. These new “guidelines” are sadly limiting very ill patients the fundamental right to be healthy. We might ask why Lyme patients are being singled out when other diseases are allowed carte blanche to treatment opportunities?
The answer is most likely to be, cost. Insurance companies, healthcare providers and others do not want to front the costs necessary to cure very ill Lyme patients. And there are other costs as well. One can only speculate whether tourism suffers if it is known that ticks are carrying infectious disease in this country. Or how many billions of dollars in hunting revenues would be lost if the extent of Lyme disease were openly shared with individuals in every state. There would be additional costs to educate physicians about the proper diagnosis and treatment of Lyme, as well as costs to educate schools to teach prevention techniques to students, and other costs.
And yet some governmental bodies, private agencies, physicians and others prefer to ignore thousands of studies and very ill patients and instead seem to promote the idea that Lyme is not a “real” illness, but simply a psychological manifestation of thousands of apparently delusional people. In the meantime, privately funded and federal disability costs skyrocket as people become disabled by Lyme disease. The cost to society is currently in the billions of dollars annually for sick and disabled people who can no longer work in a meaningful capacity and pay for insurance, consumer goods, and even taxes.
If your doctor refuses to acknowledge Lyme, you will need a second opinion, or a third, or a fourth. In fact, most Lyme patients have been to more than 10 doctors before their Lyme disease is properly diagnosed. This is not doctor-shopping. This is an attempt to find a Lyme-literate physician. Sadly, many physicians claim Lyme is “not in” (enter the name of your state here). Unfortunately, many sincere physicians, even infectious disease specialists, are not trained at diagnosing or treating Lyme disease.
Lyme is a relatively newly emerging disease in this country (over the past 50 years), and there remains much disinformation about it. Most doctors have only basic training of, or have never seen a case of Lyme, up close and personal.
Some will say “What’s that?” when you ask them if they can tell you about Babesia—a malaria-like illness that often rides tandem with Lyme disease, and also known as just one type of co-infection.
Some may even tell you not to “worry” about Lyme or will only agree to treat you for 10 days or 21 days, claiming you are “cured” after that time period. To the dismay of many Lyme patients, this attitude could not be more wrong or dangerous. Lyme, when not treated adequately, leads to permanently disabling conditions and even death. Chronic Lyme does indeed exist, and there are thousands of patients and studies that support the evidence that it is real.
As we discuss treatment, there are currently two schools of thought. Some doctors feel twenty-one days of antibiotics is sufficient for a cure. Other physicians and their patients say the problems linger much longer and that Lyme should be treated as long as symptoms are present. Treatments for Lyme disease are not without risk, but not treating Lyme is devastating. As a patient, learning as much information about Lyme disease as you can is critical to receiving proper care.
It took this author more than a dozen years just to be properly diagnosed with Lyme disease, which she and her two children contracted while playing in a leaf pile in their backyard in southeastern Wisconsin in 1992, a place doctors said “didn’t have” Lyme. When finally diagnosed in 2004, it was far too late for an “easy” cure, and much damage was already done. IV treatments and years of oral antibiotics manage to keep us somewhat physically and cognitively functioning. If Lyme had been diagnosed and treated properly at the onset, our ordeal could have easily been avoided.
The good news is that Lyme is treatable if it is detected early enough. The key is in early detection and proper treatment. Doctors often rely upon lab tests, but labs may not process blood samples properly. Bb may be undetectable in blood, or cerebral-spinal fluid, your body may not make antibodies to Bb, and tests are not 100% reliable.
Many doctors rely on outdated tests that are inaccurate, diagnose by CDC criteria meant for surveillance rather than diagnosis, and most testing laboratories use tests that are incapable of properly screening for Bb. Obviously more research is needed, and bills are currently before Congress (H.R.3427 and S.1479) to help aid in research and proper diagnosis and treatment of Lyme disease.
The bottom line is that Lyme remains a disease that should be diagnosed by a history of clinical symptoms, not upon the basis of results of one or two lab tests. Lyme is difficult to detect in the body, and timing is key. These “smart” spirochetes alter immune function so that our bodies don’t see them hiding between our cells, leaving them to set up camp for an indeterminate amount of time to wreak havoc upon us.
Lyme is now the fastest-growing vector-borne (bite) illness in the world. Physicians who have treated thousands of Lyme-infected patients are the minority few who are courageously willing to stand in the forefront of proper treatment on behalf of their very ill patients—patients who depend upon, and appreciate their honesty and dedication. These physicians are often forced to do so only at great personal expense, sometimes their own careers, because they understand how devastating Lyme disease and its co-infections truly are. These physicians are literal heroes to their patients. And yet they are sadly forced to approach treatment cautiously due to the great disparity of thinking in the diagnosis and treatment of Lyme patients.
Until the differing schools of thought attempt to work together and put Lyme patients first, we as patients will never make forward progress, taking steps back onto the road to wellness, but will remain permanently cast into the sea of denial, despair and disability that many of us are currently, and unhappily stationed through no fault of our own.
The best tool for fighting Lyme is prevention. Play safely by checking yourself and your gear.
|Wear light-colored clothing.|
|Tuck socks into your boots or shoes.|
|Wear long sleeves, long pants, and headgear.|
|Use insect repellent containing 30-40% DEET.|
|Stay off the ground when possible, and out of wet or damp areas.|
|Check yourself and others for ticks as soon as you are out of the woods.|
|Check the hairline and scalp.|
|Use a mirror or someone else’s eyes if necessary.|
|Don’t panic if you see a tick attached; be smart and remove it properly.|
|See your doctor if you are bitten, or if you think you may have symptoms of Lyme disease.|
The earlier Lyme is treated, the better your overall outcome.
Now get outside and have a good time, but look out below.
Ticks love Xtreme sports—or at least the adventurous folks who play them.