"The widely held perception is that Lyme disease is a minor, nagging illness that is easily treated and cured with 14 to 30 days of antibiotics. When an individual complains of persistent illness, they are often told that the symptoms are psychosomatic or are caused by an autoimmune condition for which there is no cure. …
And yet others are calling Lyme disease a countrywide epidemic of major proportions, which is accruing billions of dollars in medical costs, long-term disability expenses, and lost wages. They insist that this debilitating disease has destroyed lives and in some cases has been fatal; a disease that one prominent Lyme physician called "more scary than a terrorist attack" in that it is so difficult to detect and so debilitating. They question why so many physicians are dismissing Lyme patients, denying them treatment, and accusing them of contributing to "Lyme hysteria." Those on this side of this issue claim there is substantial information supporting the existence of chronic infection in long-term sufferers. They believe that the controversy is not just medical, but rather one driven by insurance companies and politics."
--from Open Eye Pictures' website (watch the trailer for their Lyme documentary "Under Our Skin")
MY LYME STORY
I'm 34 years old and have been struggling with chronic illness since I was 14. I was diagnosed with fibromyalgia when I was 21, and more recently with chronic fatigue syndrome. Seven years ago I suddenly got much sicker and became mostly housebound. Because doctors believed my symptoms were "just" fibromyalgia, they didn't think there was any urgency in treating me (many doctors I saw suspected Lyme at first-- some even tested me for it-- but ruled it out because they were not informed about how to diagnose it properly).
One doctor even put me on an antibiotic for suspected Lyme 13 years ago because my blood tests were "equivocal," but took me off of it after only 2 weeks because he mistook a Herxheimer reaction for a strange kind of allergic reaction (the Herx reaction should have been further confirmation that I did have Lyme).
Last year I was diagnosed with chronic/late-stage Lyme Disease. My doctor believes that Lyme has been the main underlying cause of my FM and CFS.
My Lyme treatments are the only treatments which have ever dramatically helped many of my symptoms. I am still very sick, but for the first time I understand why, and for the first time in many years I have hope.
I live in one of the highest risk areas for Lyme, where you might expect doctors to be informed about it. I got infected with Lyme twice...the second time (five years ago) I developed an erythema migrans ("bulls-eye") rash, which Lyme-literate doctors consider to be diagnostic of Lyme in and of itself. And I have had other "classic" Lyme symptoms. Yet it took 19* years and seeing more than 35 doctors before I was diagnosed with it. And my story is not unusual. (*Numbers updated because it turns out that I've had Lyme since I was 14 years old, not 20.)
Because I wasn't treated sooner, I have some neurological damage which my doctor believes is permanent, and I may need to be on antibiotics intermittently for the rest of my life.
My husband also has Lyme. We only found out that he has it because we learned that Lyme may be sexually transmissible, and our doctor agreed to test him, just in case... his blood tests were strongly positive. He had some symptoms for years which no-one suspected might be Lyme: migraines, carpal-tunnel-ish symptoms in his hands, anxiety, and depression. Those symptoms have been improving with his Lyme treatments.
We have a Lyme-literate doctor who is determined to help us, and we have (barely) been able to afford the treatments we need, which are mostly not covered by our health insurance. And we have each other's support. Many people with Lyme are not so lucky. To quote Amy Tan:
"As a [Lyme] patient, I have joined a club of people with a stigmatized disease that many doctors do not want to treat. While I have been lucky enough to find a doctor who is willing to provide open-ended treatment -and I have the means to pay for it- many of my fellow Lyme patients have gone without appropriate care. As a consequence, they have lost their health, their jobs, their homes, their marriages, and even their lives."
WHAT YOU SHOULD KNOW ABOUT LYME
Lyme Disease (Borrelia burgdorferi) is a bacterial infection which is often transmitted by ticks. It "may initially cause a flu-like sickness." If not treated early enough and aggressively enough, it can cause chronic and systemic illness—in some cases even death.
Lyme is the fastest growing vector-borne disease in North America. There have been at least three million cases of Lyme in the U.S. in the past three decades. There are 200,000+ new cases in the U.S. every year, according to CDC estimates (and those are only cases which meet the CDC criteria).
There is evidence that Lyme is increasing with global warming. Ticks are active at temperatures over about 36-40 degrees Fahrenheit and thrive on warm winters.
Lyme is prevalent across the country and throughout the world. This article has a map showing the parts of the U.S. with the most reported cases.
Anyone who spends time outdoors or comes into contact with animals is at risk. Children and pets are at especially high risk, since they tend to spend so much time in tick-infested areas. Many people with Lyme were bitten in their own backyards. You don't have to live in a rural area to get Lyme— anywhere people and animals and birds travel, there may be ticks (and there are other modes of transmission).
Many Lyme researchers now believe that several kinds of ticks can transmit Lyme, not just deer ticks. And researchers are investigating the possibility that Lyme can be spread by mosquitoes and other biting insects as well as ticks.
Lyme can be transmitted through blood transfusions, and can be passed from a mother (who may not know she has Lyme) to a baby through the placenta and/or breast-milk.
Almost no research has been done to determine if Lyme is sexually transmissible. Many Lyme-literate doctors believe that it probably is, partly because of its biological similarities to syphilis and the fact that Bb (Lyme) spirochetes have been found in semen as well as breast milk.
Deer ticks in their nymphal stage (in spring and early summer) are the size of a pin-head or a poppyseed, and like adult ticks, can transmit Lyme.
More than 50% of Lyme sufferers did not notice a tick.
More than 50% of Lyme sufferers did not develop a rash.
Lyme is supposed to be a CLINICAL diagnosis—a diagnosis based on clinical symptoms/history etc., not just blood tests. Lyme cannot be ruled out just on the basis of a blood test. The ELISA test misses many Lyme cases, and there are many false negatives even with the most reliable test (the Western Blot done through IGeneX labs). The Centers for Disease Control themselves have stated that their "surveillance criteria" for Lyme were never meant to be used for diagnosis, but only for tracking a particular category of Lyme cases; unfortunately, many doctors do use the CDC criteria for diagnosis.
Early and aggressive treatment is critical. In general, the longer you have Lyme, the harder it is to treat. A doctor who is knowledgeable about Lyme will prescribe 4-6 weeks (preferably 6) of antibiotics after a tick-bite, especially when a tick is known to have been attached for over 24 hours. This may seem risky, but it is much more risky not to get early/preventative treatment.
"There is no established cure for chronic Lyme disease. The response to treatment varies greatly from patient to patient. Many patients find they need to stay on antibiotics long-term ... Patients may also need antibiotic combos, coinfection treatments, symptomatic medications, and natural therapies. With these treatments some patients experience full recovery. Those who don't are left to continue the search for treatment options." (from LymeInfo)
Lyme is often misdiagnosed--or underdiagnosed--as FM, CFS, MS, lupus, bipolar, depression, and many other conditions.
Some researchers believe that Lyme is the underlying cause of many cases of Fibromyalgia and Chronic Fatigue Syndrome, and possibly Gulf War Syndrome also.
Researchers are also investigating a possible connection between Lyme disease and autism (see the Lyme Induced Autism Foundation for more info).
Mood disorders (depression, anxiety...) & other psychological/psychiatric disorders, learning disabilities and migraines can all be symptoms of Lyme. If you have any of these problems, please make sure that a Lyme-literate doctor ("LLMD") has ruled out Lyme.
If you get Lyme, you do not become immune to it. There are many strains of Lyme and "co-infections" (babesia, bartonella, ehrlichiosis...) which often accompany it, and each time you're bitten you can get different infections or get an increased germ load of the infections you already have.
HOW TO PROTECT YOURSELF
* Avoid tall grass, leaf piles, and heavily wooded or brushy areas.
* Avoid places where there are likely to be white-footed mice or deer (ticks originally get the Lyme bacteria from feeding on mice, and adult ticks mate on deer).
* Avoid brushing up against greenery. Stay in the center of paths.
* Wear long-sleeved shirts, long pants, and closed-toe shoes when possible/practical.
* Do TICK CHECKS after being outdoors and even while you're still outside, to find ticks before they attach. Make tick checks a daily routine for the whole family, like brushing teeth. (There are pictures of ticks here.)
* Light-colored clothing makes it easier to notice ticks before they attach.
* Some people advise tucking your pants into your socks (when you're going to be in the woods or other high-risk areas)... however, the Canadian Lyme Disease Foundation says that "by pulling the socks over the pants, one stretches the weave of the sock, thus making bigger holes for the flies and ticks to crawl through. It also creates a nice warm chamber between the sock and the leg...for the flies and ticks to…bite to their heart's content without being seen. A solution to this has been to wear a 3/4 or full boot, pull the pants down over the boot and use a snug fitting elastic band to snug the pants to the boot."
* Landscaping techniques (including keeping your lawn mowed short and clear of leaf litter) can dramatically reduce the number of ticks on your property… for articles about this see the "prevention" section of Wild Condor's lyme links page.
* Use an insect spray with DEET before going outside (my husband and I personally choose not to do this...we believe that Lyme and insecticides/pesticides are both part of the larger problem of illness-causing neurotoxins).
* Use tick-combs on dogs and cats. Using Frontline may also be a good idea, if you aren't too worried about chemicals. Some people think tick/flea treatments themselves can have harmful health effects on pets and humans.
HOW TO REMOVE AN ATTACHED TICK (paraphrasing from this article):
* Using fine-tipped tweezers: place the ends of the tweezers as close to the skin as possible, squeeze them onto the mouthparts (not the body) of the tick, and firmly and steadily backwards until the tick is removed. Any remaining mouth-parts can be removed at the doctor's office.
* Do NOT: squeeze the tick's body, apply Vaseline, touch the tick with a burnt match, or clean it with alcohol while it is attached. Any of these actions could cause the tick to regurgitate Lyme bacteria into the skin.
* Wash the site well, preferably with anti-bacterial soap and then an antiseptic.
* Save the tick for identification, in a glass or plastic vial with a few blades of moist grass or moistened cotton ball. Ticks can be tested for the bacteria (although Lyme bacteria does not always show up in the lab).
IF YOU THINK YOU HAVE BEEN BITTEN BY A TICK
Find a doctor who is knowledgeable about Lyme, also called a "Lyme-literate doctor" ("LLMD"), which is a term used in the Lyme community-- traditional doctors will not know what you mean if you ask for a referral to one. You can find one by going to the Lyme Disease Association's doctor referral database or the "Seeking a Doctor" message-board at LymeNet.
Especially if a tick was attached for more than 24 hours, or if you have a bull's-eye rash (even if you didn't see a tick), don't let a doctor wait for the results of a blood test before treating you. False-negative test results are common, and infection can spread rapidly through your system.
You may not develop symptoms immediately, and you may not develop "classic" symptoms... everyone is different. There is a list of all the possible symptoms at the end of this article.
ABOUT THE VACCINE
There is currently no safe Lyme vaccine available to the public. The LYMErix vaccine was taken off the market in 2002, after "a class action suit was filed against SmithKline Beecham, the manufacturers of the... vaccine... for [allegedly failing] to warn doctors and the general public that nearly 30% of the general population was genetically predisposed to a degenerative autoimmune syndrome, including chronic arthritis, which the lawsuit says, is triggered by the... vaccine."
WHAT YOU CAN DO TO HELP
Help spread the word about Lyme. Many people with Lyme are too sick to do much advocacy.
Donate to Open Eye Pictures to help them publicize and release their Lyme documentary "Under Our Skin: The Untold Story of Lyme Disease". You can watch the trailer here.
URGENT! Urge your representatives to support Federal Bill HR 741, The Lyme & Tick-Borne Disease Prevention, Education & Research Act of 2007... more info here. (Update: this bill is now HR 1179, The Lyme and Tick-Borne Diseases Prevention, Education and Research Act of 2009.)
URGENT! Donate to help Dr. Jones in Connecticut... more info here.
Donate to help Dr. Hoffman in Wisconsin (press release here; more info here--PDF)
Sign this petition against IDSA guidelines which are effectively stopping treatment for Lyme patients.
Update 5/08: CT Attorney General Richard Blumenthal has found that the IDSA's guidelines were influenced by the guidelines authors' significant conflicts of interest, including ties to insurance companies and product manufacturers, and has ordered the IDSA to reassess those guidelines.
Send the video(s) below to your friends and family.
