Rick Carr | The Pontiac Tribune
The most disturbing part of this issue is not how little the general public knows about Chronic Lyme Disease, but how much the general public thinks they know about it.
CHRONIC LYME DISEASE
With the CDC recently admitting that the number of people contracting Lyme is actually ten times what had previously been reported, making that number 300,000 cases or more annually, one thing is clear, Lyme is the fastest growing epidemic in the United States and possibly the world.
That said, the most disturbing part of this issue is not how little the general public knows about it, but how much the general public thinks they know about it.
There is nothing more insulting than telling a sick person how they feel and what is wrong with them when you have personally never experienced it. That is like a man telling a woman how she should feel during pregnancy.
However, this happens at a startling rate and has been the painful norm among people suffering from Chronic Lyme for years. With a wave of misinformation, not to mention a lack of compassion from the CDC, IDSA, and the FDA, it is no wonder this disease is causing a war within both the medical and Lyme community.
For those who don’t believe something like this could happen, think again.
Unfortunately, the world went through similar events with AIDS in the 1980’s, and like AIDS, the truth is that Lyme could eerily look like an HIV-negative Acquired Immune Deficiency Syndrome when you combine the way it affects the afflicted, the way it is handled medically, and public opinion.
However, despite what people think, Lyme does affect people chronically, and the public needs to start taking it seriously and examining it with a more critical eye.
Why? Because despite the best efforts put forth by people who are struggling with this illness, the CDC and IDSA refuse to acknowledge even the existence of Chronic Lyme Disease, and without an educated public, the fight for not only a cure, but prevention, will remain painfully slow.
Chronic Lyme Disease is Real.
I remember being a little kid in the 1980’s, and I remember when the term “AIDS” hit the news. Immediately, the rhetoric that it was a “gay disease” was pumped into everyone’s heads as fact.
According to a publication by the Kaiser Family Foundation titled, Evolution of an Epidemic: 25 Years of HIV/AIDS Media Campaigns in the US,
“On June 5, 1981, the U.S. Centers for Disease Control and Prevention (CDC) introduced the world to the disease that eventually became known as AIDS. On that date, the CDC’s Morbidity and Mortality Weekly Report (MMWR) reported on five cases of young homosexual men who had developed Pneumocystis carinii pneumonia, a type of pneumonia that was ‘almost exclusively limited to severely immunosuppressed patients’ such as those receiving cancer chemotherapy. Although the report noted that the ‘patients did not know each other and had no known common contacts or knowledge of sexual partners who had had similar illnesses,’ it stated, ‘the fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact…in this population.’ Whereas the disease had most certainly been present earlier in the U.S. and elsewhere, the CDC’s report marked a defining moment in public recognition and response to the emerging epidemic.”
And there it was: As long as you were straight, you had nothing to worry about.
Imagine that—a group of federally employed medical professionals implied there was a disease that targeted you based on ridiculous and scientifically-lazy standards. Even as a child, I asked my parents how the disease knew whether you were gay or not. It didn’t make any sense to me.
In an article published by CNN titled HIV in the 80’s, Dr. Alvin Freidman-Klein stated, “The attitude was, these (diseases) are only in gays and IV drug users, underdogs, people who didn’t deserve any special attention.”
War had been declared.
Sadly, it took ten years to sway public opinion as activists and celebrities banded together to get the truth out about how this budding epidemic was everyone’s problem.
By the late 80’s, America Responds to AIDS, an organization whose purpose was to educate the public and remove stigmas, was fighting an uphill battle. Only seven percent of people reported knowing someone with the disease and many supported efforts to segregate and punish infected people.
More than half the country polled supported the idea that infected people should carry a card, and a similar percentage believed if you were living with AIDS, it was your own fault. To find similar examples of how people with Lyme are treated, one doesn’t have far to go in this day and age. Find any article about Lyme and read the comment threads.
People immediately disregard the sick as “crazy” and engage in vicious verbal attacks and insults, claiming that people who are scared and dying need to “get over themselves” and need to “shut up and die already.”
Often times, you don’t have to look any further than the article itself, as well as many articles published by the mainstream media to see how people with Lyme are treated—like the article recently published by The Daily Beast written by Dr. Saunders, who basically laughed off the nightmare that Yolanda Foster (who is a model and cast member on RHBH) is living and dying through.
It’s especially disturbing that Dr. Saunders made it a point to covertly attack a celebrity who is simply trying to document her personal struggle to let other sick people know that she is trying, and they are not alone or being disregarded. He never met her, never treated her, but wrote about her as if he had the answers by smearing her name or even the idea that there could be a chronic form of the illness.
Articles like that are the norm, and many comments reflect a public opinion shaped by, not only these articles, but the very same organizations that were responsible for misrepresenting AIDS all those years ago.
It doesn’t help that the IDSA regularly implies that doctors should recommend a psychiatrist to Lyme patients complaining of lingering symptoms after the IDSA-recommended treatment course has ended.
That said, once you label someone as “crazy,” people stop listening, and it’s a dirty trick. AIDS in the 80’s is a glaring example of how hard it is to reverse a label once it has been given by these federally-protected institutions.
Presently, it would be easy to blame your doctor for this, but not all doctors are to blame. Many are bullied by insurance companies who work hand-in-hand with the CDC and IDSA to not give their patients the whole story.
They won’t tell you the FDA-approved Western Blot Test for Lyme is only about fifty percent accurate at best and that the longer you’re sick, the more inconsistent the test becomes. They won’t tell you there have been attempts to enact laws requiring doctors to tell any patient given these tests that they are about as reliable as a coin toss. They won’t tell you that a “bulls-eye rash” appears on people who contract Lyme less than fifty percent of the time.
Most doctors won’t tell you these details because in the current medical climate, doctors are being dragged in front of medical boards and penalized for treating the disease as an ongoing bacterial infection and not just a quick thirty-day round of pills. Doctors have even had their licenses taken away for diagnosing and treating the disease beyond the IDSA-recommended treatment course.
This is important to understand because it means that your old-fashioned idea of what a doctor does, and I am sure in many cases wants to do, is not real. Your doctor diagnoses the illness and is then forced to treat you based on what your insurance company says is permissible, and many are left with no choice but to treat you for something you don’t have out of fear of scrutiny.
Why would anyone let this happen?
My partner has lived with this nightmare for nearly twenty years. By 1999, her family spent over $35,000 to treat illnesses she didn’t have, and considering Lyme, “The Great Imitator,” mimics over 300 illnesses, maybe money is the answer.
She had three false negatives and did not know for sure what was wrong with her until she had her blood tested at an independent facility with more accurate testing.
I should also point out that the FDA is currently trying to take over facilities like this which means your right to have your own blood tested independently is in the process of being taken away (although, even if they weren’t in jeopardy, it is important to note an insurance company will not pay for your treatment if your positive test result came from a non-FDA approved lab).
Throughout her battle, she had a PICC-line in her heart, and they almost amputated her foot at one point. Since then, she’s lost the use of nine of her fingers, she’s in a wheelchair half the time, she suffers from heart problems and brain swelling, and that is only the tip of the iceberg, and yes, she has been through a gauntlet of doctors and has been tested for everything under the sun time and time again.
That is why people with Lyme are so angry.
When they are told they need a second opinion, chances are they have already been through three, four, five, six opinions or more. They have researched holistic medicine, they have been through lists of specialists and infectious disease doctors, and they know what the CDC’s website says already. It doesn’t need to be posted for them to read.
That is the point and the problem rolled together.
More accurate testing is desperately needed, and unless the CDC and IDSA acknowledge the existence of Chronic Lyme and revise their harmful guidelines, that will never happen. This system leaves people fighting for their lives all alone, and it is insulting to assume they haven’t researched the obvious and beyond.
No One Wants to Have Chronic Lyme Disease.
After meeting many patients and having my boots on the ground in this fight, I can say with certainty that anyone who has Lyme wishes it was something else because maybe then, they could find treatment. Maybe they wouldn’t be stuck watching their bodies fall apart because there are no doctors who look at the body as a whole and make a determination.
Think about it: Heart doctors treat the heart. Bone doctors treat your bones. Who do you call when it is all falling apart at once? Who do you call when you have a disease where the leading causes of death are suicide and heart disease and no one believes you, all while you feel like something is chewing on your bones?
Where do you go when you have been suffering for years, and the medical community tells you your disease does not exist, so your insurance company does not have to pay for treatment?
Imagine dealing with all this while grappling an illness that studies have shown to cause a worse quality of life than people with MS, diabetes, or even congestive heart failure.
To top it off, the few doctors brave enough to treat Lyme are being persecuted and demonized left and right, furthering the public’s misconceptions about the seriousness of the disease.
I write this article, not to preach to the choir, but because I love and care about someone who is sick. I write this because I’ve met so many people who need help, yet instead of getting it, fall victim to criticism because, at the risk of sounding offensive, too many people think they know everything because they have Google in their pocket. Google may provide you with information, but it will never provide you with wisdom—that requires experience.
To that end, I would never pretend to understand what someone with Lyme is going through, but I do acknowledge the battle for all it is worth, and I encourage others to do the same.
Now that research is beginning to show that Lyme can be contracted sexually, maybe we’ll see a shift, but until then, if you have friends or family who are sick, you need to stand with them. You need to fight with them.
They are in the middle of an emergency, and frankly, so are the rest of us because the same organizations responsible for this mess are in charge of our health whether we have Lyme or not. If they can do this to people with AIDS and Lyme, they can do it to everyone.
For more information, check out a documentary called, “Under Our Skin” and visit ILADS.org.