Why We All Need to Share Our Stories About Lyme Disease

Imagine you awaken every day of your life feeling as though you have the flu. Imagine exhaustion like lead, weighing down your limbs, and stabbing, burning, aching pain, continually assaulting your joints and muscles. Then imagine you can no longer focus, think or remember, or do such simple things as read a book or drive a car. Imagine you suddenly become allergic to every food and chemical out there, and can no longer go out into public places because you’ll get even sicker. Then, imagine crying for hours, day after day, month after month, year after year, from severe depression and anxiety. And then, picture another 10-20 symptoms on top of that.

Then, imagine losing your job, home and everything you once loved about your life – because you can no longer function. Imagine being isolated and confined to your house for years. Imagine no longer being able to go anywhere except an occasional trip to the grocery store; you can’t attend gatherings, parties or events, travel or essentially “have a life.”

 

It might all be tolerable if you knew it was temporary – if you understood what was happening in your body and that, like the flu, there would be an end to it all in the near future. You might be able to remain hopeful and hang in there if you knew that the pain, fatigue, grief, cognitive problems and the rest would disappear with time and the right treatments.

But then imagine that it doesn’t all go away, day after day, year after year and nobody knows what’s wrong with you, including you. You go to your doctor and tell him or her what is happening; he or she runs some tests, finds nothing wrong, gives you an anti-depressant and tells you to go home and get more exercise or change your diet. Thus begins your journey from doctor to doctor as you do test after test and spend all of your savings, your 401K and then some, only to get no closer to the real diagnosis.

As you are now unable to work, you run out of money for basic necessities and put your home up for sale. You call on family and friends for help, expecting they might understand your desperate plight. Yet because you haven’t been diagnosed with a disease that is widely understood, the doctors don’t know what’s wrong and (with the exception of some hair or weight loss) you seem to look and act pretty normal, they don’t extend a hand to help.

In fact, many of your loved ones don’t even believe you are that sick. They insinuate that you’re depressed – that you need to exercise or get out more, or just take a pill and get over it. Besides, the doctors have said there’s nothing wrong with you, because you, and your labs, look fantastic. And occasionally, you can go out for a social event, or maybe you are even well enough to get on a plane to visit friends or family in another state. You might even still be managing to work part-time. “So what’s the big deal?” many might think. “Everyone is tired. Everyone hurts. Everyone has bad days…right?”

 

Except you now have a bad day every day of your life. And your bad days aren’t just about a sore back, tiredness from a sleepless night or a temporary flu. Daily, every organ and system of your body malfunctions and affects basic bodily functions that others take for granted. Things like being able to breathe, go to the bathroom or stand up for more than a few minutes at a time. This is in addition to the fatigue, pain and other more obvious symptoms you have.

Some days are better than others, but symptom-wise, none of your days are great. You seldom, if ever, awaken with energy; pain is your daily companion, as are brain fog and other problems. Other symptoms come and go, and they vary from day to day or month to month in their intensity. But they never go away.

Then, finally, one day, you find a doctor who knows what’s wrong with you. He says, “You have Lyme disease.” The diagnosis is a welcome relief from all the uncertainty, but the relief is quickly replaced by dismay, as you find that the road to recovery is longer and harder than you ever dreamed. It involves thousands of dollars, difficult detox reactions, hours of pills and therapies and more time, energy, money, determination and discipline than you have ever spent on anything else in your entire life. It may be the most difficult trial you have ever faced.

Your doctor tells you you’ll be on intravenous or oral antibiotics, herbs, vitamins, hormonal treatments, rabbit food diet and two dozen other therapies for anywhere from two to five years, although you find that many others in your boat end up doing treatments indefinitely once they are more functional.

You begin to realize, from the stats, that you may or may not fully heal. The treatments will definitely help you, but you’ll be happy if you recover 70-80 percent. What nobody tells you at the outset, but what you learn down the road, is that treating Lyme disease can cost you anywhere from $15,000-30,000 per year or more…for the rest of your life.

Because even if you are fortunate enough to attain remission, you may have to do a lot more than you once did to stay well. You’ll have to take lots of supplements, do detoxification treatments and other things just to stay functional. This is because the Lyme disease has damaged your body so that your organs don’t work as well they once used to.

You may heal enough to be able to return to work part-time or full-time, but not enough to maintain much of a social life or a life that includes other things. Yet even though you have less energy to work than before, you have to find a way to make a lot more money than before, because you now have an ongoing health maintenance regimen that chews up a huge chunk of your income. You might have to forget about saving for retirement, buying a new car or that vacation to Europe. Or perhaps you will be more blessed and able to return to the life you had before…and while this should be everyone’s hope and goal, the reality is not everyone will get to that place.

You aren’t the only one living this nightmare scenario, but do your friends and family know what you, and so many others, are living? Does your community know? If not, I encourage you to share your story, and the following with them.

First, the Centers for Disease Control (CDC) estimates that there are over 329,000 new cases of Lyme disease every year in the United States alone, although these numbers are likely to be much higher – as much as one million per year, by some researchers’ estimates. This is because this statistic doesn’t account for the unreported and misdiagnosed cases, as well as many other factors. Yet Lyme disease is a worldwide pandemic, but remains improperly diagnosed because it mimics symptoms of other illnesses, such as Parkinson’s, multiple sclerosis, myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, lupus, arthritis and many others.

What’s more, conventional tests such as the Western blot and ELISA are unreliable, inaccurate and don’t detect most cases of Lyme. These tests look for antibodies to Lyme, but many people do not produce antibodies in the later stages of disease. Lab tests have also not yet developed for many species of Borrelia, Babesia, Bartonella, Mycoplasma and other infections involved in Lyme. Instead, sophisticated, outside-the-box testing methods such as Borrelia culture tests, electrodermal screening, dark field microscopy, Applied Kinesiology, PCR tests and others are needed to detect it, but few doctors use these.

Diagnosis is complicated by the fact that many doctors are not taught how to identify chronic Lyme disease and are even taught that it doesn’t exist. Instead, the Infectious Diseases Society of America and the Centers for Disease Control maintain that chronic Lyme disease – the fastest growing infectious disease in the United States, Canada, Australia, Europe and perhaps worldwide – can be cured with just two weeks of antibiotics. Any symptoms that continue after that time are attributed to “post-Lyme syndrome,” an imaginary condition created by the medical establishment to explain away the presence of ongoing infection, which they refuse to recognize, despite much evidence to the contrary.

Those doctors who dare to treat it risk persecution and their licenses being revoked. So many people with Lyme disease must travel, even to other states, to find doctors and practitioners who understand it. These doctors’ waiting lists are many months’ long, and their services often pricey, since most insurance companies will not cover treatment.

Further, Lyme disease is a political disease, and research study results published in the worldwide medical database PubMed.org are distorted to favor the political agendas of some, while other studies reveal the truth. Yet because all of these studies, including those that tell a lie, are published in well-respected medical journals, medical practitioners are left in a sea of confusion about chronic Lyme. Others know the truth but don’t want to touch this complicated disease with a 10-foot pole because of the challenges of diagnosis and treatment, and because they risk persecution for doing prolonged antibiotic therapy and other valuable treatments.

What remains then is for those of us who are canaries in the coal mine to tell the truth. To spread the word, far and wide, about the reality of a severe, disabling disease that isn’t just spread by the bite of a tick, but by other insects such as mosquitoes, fleas and mites, as well as from person-to-person, congenitally, via body fluids, blood transfusions and other means. We must tell the truth to our local government representatives, to the CDC and IDSA, to doctors, to everyone we know, so the current diagnostic and treatment guidelines will get overturned and new, accurate methods of diagnosis and treatment will get created and embraced.

In the meantime, be encouraged – my personal experience with Lyme and that of many others I know has taught me it is possible to get better with perseverance and the right treatments. What’s more, the medical community is becoming increasingly aware of chronic Lyme disease and learning how to treat it. More and better resources are becoming available, so be encouraged, because there is healing, and there is hope for recovery.

This post originally appeared on ProHealth.

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Thinkstock photo via ViktorCap.