Lyme Disease Start Talking

Lyme Disease, Start Talking* Lyme Awareness Month (May 2009) isn’t over yet. Nevertheless, that celebrity Swine flu, alias H1N1, is still in the spotlight. Well, your time is up, Swine Flu. Put down the mic, step away from the media. We need to hear from your bacterial brother Lyme Disease. (Quick bio for the uninitiated: Lyme Disease is an illness caused by bacteria Borrelia burgdorferi, usually with co-infections of other organisms, including protozoan Babesia and bacteria Bartonella.) Lyme has been overshadowed for too long by you well-publicized illnesses, anyway. Not that flu isn’t important. It’s just that Lyme has undiscovered talents, and his time has come. For some reason, in every state, Lyme sees the same doctors H1N1 does, fools them, and gets away unnoticed. Doctors completely mistake Lyme for ALS, MS, Parkinsons, Alzheimers, Dementia, Fibromyalgia, Chronic Fatigue Syndrome, Epstein Barr, Arthritis, Lupus, Heart Disease, and others. With a cast of mistaken identities like that, you can bet people are lining up with their IV bags and pill bottles to hear more from Lyme. The illness tickets have been sold, so the show needs to start. The Infectious Diseases Society of America (IDSA) members act as if they don’t want to hear from Lyme, but we think they should. Their guidelines for family doctors, who have to face Lyme’s true impact every day, don’t quite tell Lyme’s story. But doctors have to follow those guidelines, so what’s a patient to do? IDSA says to treat Lyme like an understudy, a last resort identity. Family doctors seem to want to use their educations and give Lyme some time, but that always seems to bring them trouble from authorities. IDSA says it would do more about chronic Lyme Disease, if only it had studies proving the need to do so. Bring it on, IDSA. Do a few studies. After all, infectious diseases promise to get top billing for the next century. The Centers for Disease Control might want Lyme to talk. They do offer some broader guidelines saying Lyme symptoms automatically warrant a good listen. They say they’re counting the number of cases. However, if you remember that IDSA is not friendly to doctors who really treat Lyme Disease properly, the CDC is not likely to hear from those doctors, or to know who is being treated. The numbers will never add up. The CDC really does want to hear from Lyme, in the end. However quietly, they give Lyme top billing on the “hey, watch out for THIS thing” list. They even put Lyme on a list of diseases that includes Ebola. Talk about star power. This is because they know: Lyme is virulent, stealthy, persistent, and nearly everywhere. Imagine if you could catch, say, HIV/AIDS from a tick or a sand flea, by hugging your dog or going for a walk. Lyme auditions on more stages than HIV. You would think casting would be imminent. Many people really do want to hear from Lyme. For one thing, they want to know why no hope is given to those with long term cases. Guess there should have been a study on it. Why are the reported numbers of cases so low relative to the perceived number? How does the government count Lyme’s victims, anyway? What happens to children, the elderly, the poor, and migrant workers? The people who farm your food? These questions lead to hard stonewalls. An estimated 300,000 cases into this illness, institutions say that whatever they are doing is enough. No, they need to hear Lyme speak first.

Get the moving picture? If it doesn’t exist, or if treatment guidelines don’t warrant it, then insurance can’t or won’t cover it. There is not enough insurance coverage in the world to cover Lyme. Medicare, Medicaid, and Social Security Disability usually won’t cover it. Most doctors won’t treat it, because they do not know what it is. Patients travel region to region, seeking a Lyme-literate doctor and a proper test. There are only one or two labs that even do the test. Everybody else is off the hook. Then there’s the money. More about that later. So, who is protecting Lyme patients? It seems many people try, but few, if any, really have the power to help. Strangely, even those who say they would like to help seem to contradict themselves. NIH’s Institute for Neurological Disorders and Stroke “…supports research on Lyme disease. Current areas of interest include improving diagnostic tests and developing more effective treatments. The National Institute of Allergy and Infectious Diseases, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, and the National Center for Research Resources also support research on Lyme disease.” What does that mean? It is interesting to note that on the NIH sites, IDSA is not mentioned as a support organization, but the Lyme Disease Foundation and the Arthritis Foundation are. Does that mean Lyme really does cause arthritis? The CDC says that arthritis is the leading cause of disability in the U.S. Lyme doctors can tell you that Lyme is a leading cause of arthritis. The plot thickens every day, and the show hasn’t even started. Give Lyme the mic. There’s always prevention, they all say. Just ask Lyme to be quiet, and you’ll be fine. Often cited as the only hope of avoiding a serious case of Lyme Disease, tick awareness is the key. The problem is that young ticks are the size of poppy seeds and so are nearly impossible to detect. They live on many animals, in grass, trees, and mulch. They live on deer, mice, migratory birds, and other animals. In the South of the U.S., lizards seem to be their hosts. Ticks attach themselves to your socks, shoes, trousers or feet and end up behind your ear, where you can’t see them. Or in your armpit. In short, they find you, travel, and hide. Raking leaves? Ticks are there. Walking in the park? They are there. Ticks have no boundaries. And then there are the other vectors, the critters that carry the bacteria. We do not necessarily know how many Lyme vectors there really are. Ticks may not be the only ones. Flies have been shown to carry the organisms. And which organisms are in those vectors? And how do their effects compound to cause illness? All the contradictory attitudes toward Lyme research, treatment and public discussion smack of suppression of medical evidence, or worse. The CDC says that for chronic cases, “longer courses of antibiotic treatment are not beneficial.…” We understand that good science and “first do no harm” are critically important in medicine. However, that is a strange statement from the organizations that say Lyme has “been linked to serious complications, including death.” Lyme victims know well that a short course of antibiotics will not only fail to heal, it will jumpstart the special hide-and-seek nature of Lyme spirochetes. If you do not believe that Lyme is plagued by shadow and damned by faint praise, just ask the average person what he or she knows about it. They won’t know much, so ask legislators and medical boards. They don’t know much either. But they certainly give Lyme Disease when they want to fire doctors who have chronic Lyme patients, especially in states with a lot of ticks. Again, “first do no harm” may be what

those medical boards want to convey, doing their duty. But there is something else going on, here. The Connecticut State Legislature recently passed a bill to protect those doctors really trying to hear Lyme. The Connecticut Attorney General had something to say about that, and the IDSA committee that wrote the guidelines that say chronic Lyme Disease just doesn’t have that star quality. The guidelines only say that Lyme exists for about a month, and after that, it’s really something else. Those people with lifelong cases just have it wrong. Back to the money. Is there a plan to hear from Lyme only after someone makes money from a big reveal? Some think so. The Connecticut Attorney General investigated IDSA’s Lyme guidelines committee and found conflicts of interest. (IDSA also writes letters to NIH about restrictions to their interests.) So, some doctors hold off treatment for Lyme, but perhaps they were in line to profit from vaccines later. There were plans for vaccines, actually, though the first vaccine was said to have failed, so it was pulled off the market. What is repeated often enough hardens into conventional wisdom. So, “pulled off the market” was a sort of full stop, a reason not to ask more questions. It was written but seldom reported that the vaccine killed people, making it substantially less marketable. Isn’t that more than “pulled off the market”? The reason it killed people may have had something to do with the way people need to heal from Lyme. Do we know? Is a vaccine even possible for an organism such as Borrelia, which causes Lyme? On my last visit to a Virginia hospital emergency room, no doctor asked a single question that would have led him to Lyme. Even I had not understood my classic Lyme symptoms. I now remember the rash. It certainly looked nothing like the bull’s eye usually described. Medical textbook photos of atrophied skin like mine usually had captions such as “found in Europe.” I had been so exhausted for so long, that I had forgotten a sudden high fever and flu one summer in childhood. The headaches and meningitis-like neck pain for years. The constant flu-like symptoms that never went away. The fatigue and neurological effects that robbed me of marriage, children and career. Nobody could understand it. So, after cardiac tests proved nothing, I left the emergency room hopeless. Every emergency room should be prepared to make a differential diagnosis based on current clinical presentation guidelines from the CDC—for starters. (We wonder how IDSA and the CDC talk to each other, by the way.) How can they do that, if today’s interns and residents learned outdated, insufficient and misleading information, accompanied by bad photographs, in medical school? How can they do that, if young doctors do not believe Lyme exists after four weeks of antibiotic treatment? Hospitals should be very concerned for another reason: Lyme is in their blood supply. Babesia, a protozoan coinfection from the same vectors that carry Lyme, and closest relative of Malaria, has been shown to persist in blood supplies spanning the nation. No state is safe. If you still think your state is free of Lyme Disease, perhaps learning how blood supplies are shipped would change your mind. (We wonder what else is in that blood supply.) So, as long as H1N1 dominates the infectious disease Red Carpet, Lyme can enter backstage almost undetected, causing hundreds of thousands of people to become ill, often bedridden, unemployed, depressed and even suicidal, without any of the help they need. Lyme will force many people into insolvency, isolation, and incarceration. (Tuskegee experiments ran for 40 years with similar effects.) You see, Lyme can infect the brain and will get on every last nerve. In fact, it will find the central nervous system, causing pain, and lots of it. The word “startle response” has special meaning to Lyme patients.

Children do not have language to put all their symptoms into words, and so suffer more. Silenced by debilitating illness, humiliation, the medical community and government, Lyme patients are deprived of care and dignity. When preventable neurological effects set in, they are not able to carry out daily tasks, sleep or find words to speak. They become blank, unable to dial a phone number. They will sleep a lot. They will be at risk for early dementia and paralysis. The cost to the workforce must be staggering. Unfettered by real medical care, insurance, front-page press coverage, or policy support, Lyme could literally paralyze our nation’s workforce. People will simply drop out by the tens of thousands for years or even permanently. What furor will ensue if Lyme’s delayed speaking engagement draws ire from the public? How will science and medicine approach Lyme then? How will they, and our government, explain their role in the age of information technology, social media and viral marketing? What happens when we really listen? How many Lyme vectors will we find? How will we deal with them? Will toxic bug spray, environmental destruction, perhaps massacres of deer and smaller mammals be all the rage? Mass euthanizing of dogs and cats? What will we telegraph to the environment and to our children about living in and near nature, when Lyme gets the mic, big press coverage and attention? Will there be a panic? How is it that Lyme, the “Malaria of North America,” is not known as harbinger of change to the way we approach infectious disease? OK, Malaria is the leading worldwide killer; however Lyme is known worldwide for the miscreant that he is, too. He has the same problem all over: nobody’s listening to him. Let’s not allow Lyme to compete for Malaria’s role. Lyme is free to roam worldwide, uninvited without accountability, despite very bad manners. He roams where he is not welcome, spreading fear an pain. He does not respect age limits or boundaries, infecting babies and spouses, just like that bad actor, Syphilis. (There’s debate about that, but he’s related to Syphilis and certainly seems to be meaner and smarter.) Lyme cripples and kills farm animals, wildlife and beloved pets. Lyme can paralyze animal and man overnight and linger a lifetime. He changes form and appearance, can hide fast, and lives where medicine can’t reach him. He is found inside your cells, and he may be trying to become one with human genetic material. Long after you, Swine Flu, have left us, Lyme will overstay his welcome every time. So, a little more attention right here, right now would be appreciated. The film LymeLife is playing in local theaters to good reviews. In June, the award-winning and terrifying seminal documentary on Lyme Disease, Under Our Skin, opens in two New York theaters, and perhaps soon in Washington, DC. In July, IDSA will review its controversial 2006 Guidelines for Lyme treatment. (That promises to be a lively process.) There’s a lot going on right now, so it’s time for Lyme to speak up. Oh, and by the way, Lyme’s quieter, more sinister cousin, Morgellons, has been reported in Maryland, Texas, California, and other states. Europeans and Asians are reporting Morgellons to be an up-andcoming U.S. export. If you look closely, you’ll see a resemblance: hiding in plain sight, stealthy, desperately in need of attention, really bad behavior, scary looks, infectious quality, and symptoms that mimic Lyme. Morgellons is painful and disfiguring, and may be more contagious than Lyme. The CDC, not surprisingly, says Morgellons is probably all in patients’ heads. Sound familiar?

So much to hear, so little Lyme. We cannot be ready for Lyme, Morgellons and many other diseases if we do not know the truth. Move over, H1N1. Someone, give Lyme the mic.

*Not prepared or vetted by doctors. Do your own due diligence. May 2009.