Lyme Disease: What’s all the Rage about?

Lyme Disease: What’s all the Rage about?

The room is quiet, broken only by the sound is gentle sobs.

“I don’t understand why I can’t get better?” 

“Why can’t my doctor figure this out?” 

“This disease has reduce my husband to a fraction of the man he once was” 

“It’s killing me to see my child hurting and I can’t help them” 

“My Doctor told me I was cured but I am still sick”

These are the agonizing comments you hear in Lyme Disease support groups. Comments spoken over and over again by many different people,connected by a common thread ~ Lyme Disease.

Lyme disease (borrelia Burgdorferi) is an infectious and controversial disease commonly known to be transmitted via the bite of an infected tick. Controversy lies in that Lyme Researchers have found Lyme Disease to also be contracted via mosquitoes and virtually any form of blood/fluid transmission from an infected source. Studies have shown it has been transmitted in utero to unborn children.Controversy surrounds studies of sexual transmission. Needless to say, when you mention Lyme Disease, you can be assured that you will be plagued by many with personal experiences and varying options.

And since there is no cure all formula, Lyme patients are left to themselves to find what works for them. Controversy lies in long term treatment, natural vs conventional treatments, rife machines, oils, meditation, so on and so on. Desperation fueled by a desire to get better drains us financially but we still grasp at hope when we hear of someone getting better. We will spend our very last dollar visiting “their doctor” and purchasing whatever “they took” that made them better. Sometimes it works, sometimes it doesn’t. And when it doesn’t, it only reinforces the realization that we’ve known all along ~ we’re never going to get better.

And so we rage….

We strike out at the doctors that failed us, at the medications that didn’t produce, at the people who walked away and left us behind. We rage out at all that we have lost to this disease.Our jobs, our hobbies, our friends, our ability to even function normally within our own homes. We rage because we can no longer dress ourselves, feed ourselves, cook, clean, drive. We can no longer think clearly, talk clearly, walk steady. We rage because we didn’t ask for this and yet no one can seem to help to us. Untrained doctors only compound the suffering, with endless testing and medications that produce no answers or comfort.

Current testing is unreliable and fallible. Currently, the U.S. government only sanctions and promotes what is commonly referred to as the two-tier test, which consists of an ELISA (enzyme-linked immunosorbent assay) followed by a Western blot test, only if you test positive or equivocal to ELISA. This is considered standard procedure and “best practices” at hospitals, clinics and medical practices throughout the U.S., even though studies have shown repeatedly that the ELISA test misses anywhere from 50% to more than 85% of positive Lyme disease cases. Subsequently, the majority of people infected with Lyme disease will test negative via this FDA-approved and CDC-backed testing method, be left untreated, and endure needless and indescribable suffering, sometimes for decades,as the disease progresses. False negative test results bring about false security and comfort to a bacteria that that has just been given the green light to disseminate freely throughout our bodies. The longer this bacteria is allowed to remain in our in bodies,untreated, the more chameleon it becomes in nature. Migratory and sporadic symptoms keep our doctors puzzled and looking at us in question. The longer this bacteria goes untreated, the harder it is for us to be heard, to be taken seriously, because now, now we are suffering, we are hurting, we are tired…and we are raging.

We rage against those who try to help us, because it reminds us of what we can not do. We rage in place of grief. We rage in place of fear. We rage against those who are our closest support because they see us fading away on a daily basis. We left behind. We see the looks on their faces, our reflection in their eyes and we don’t even recognize ourselves. We rage because we can’t get the words out, can’t get our minds to function, to understand, to connect the dots of even the easiest task. People say “Oh I walk in a room and forget what I was going after all the time. It’s age, its hormones, its this, that and the other.” But for us, for someone suffering from Lyme Disease, its none of that. It’s this widely disseminated, untreated bacteria that has been allowed to hijack our minds and bodies. We stutter, we shake, we drop things, we stumble and fall…and we rage because of it. Because we used to stronger, sharper, smarter.

Now,thanks to this multi-decade decade growing controversial disease, that is affecting people of all pay grades and status, we are still waiting to be heard and we are still waiting for change. Legislation is in the works on a daily basis. People in positions to make laws are fighting on our behalf. Even baby steps are a huge fight. And we stop raging, temporarily, to celebrate even the smallest victories.Victories give us hope and some days, that’s all we can cling to ~Hope.

Lyme Disease, as controversial in nature as it is, has convinced top researchers at prestigious universities such as Columbia and John Hopkins. It has convinced politicians to fight for laws to aide their state’s Lyme communities. It has formed organizations that has funded millions of dollars in research. It has produced whistleblowers within our established government. So why is it so hard to convince our doctors, whom we’ve established long time relationships with, to fight on our behalf, to listen to us, to believe us?

Recently,there was a video circulating Facebook, an excerpt from an episode of the Golden Girls, where Dorothy is in a restaurant and she see’s her Doctor dining there with his wife and she approaches him. She reminds him of when she went to him and he told her that she wasn’t sick. She tells him that she has Chronic Fatigue Syndrome and that it is a real illness defined by the Center for Disease Control. He apologizes in an attempt to make her go away but she interrupts him and says “I’m glad, at least I know I have something.”

He tries to dismiss her but she stands her ground.

She starts with “There are somethings I have to say. There are a lot of things I have to say. Words can’t express what I have to say. What I went through. What YOU put me through.” (and she breaks off with emotion, but returns with strength) and continues with, “…I came to you sick. Sick and scared…and you dismissed me. You didn’t have the answer and instead of saying “I’m sorry, I don’t know what’s wrong with you”, you made me feel crazy like I had made it all up!YOU DISMISSED ME! You made me like a child, a fool, a neurotic who was wasting your precious time. Is that your caring profession? Is that healing? No one deserves that kind of treatment, Doctor. No One!”

She wraps up her assault with, “I don’t know where you doctors lose your humanity, but you lose it. If all of you at the beginning of your careers could get very sick and very scared for a while, you would probably learn more from that than anything else. You better start listening to your patients. They need to be heard, they need caring, they need compassion, they need attending to.”

And as she stands, she ends with this, “You know, Doctor, one day you’ll be on the other side of the table, and as angry as I am and as angry as I always will be, I still wish you a better doctor than you were to me.” and she walks away…

Oh, don’t we all wish for an opportunity to have our say to those who have done us so wrong, to finally be heard, to have our justice!!

Everyday people are fighting Lyme Disease. People with Lyme, families affected by Lyme, communities becoming more aware and educated, for fairness and above all, for change.

Change WILL come, and one day, when there is better testing, more understanding of this disease, better trained doctors, when there is once again compassion for the patient who is struggling to understand and make sense of this senseless disease, when instead of tunnel vision there are open minds and a willingness to help people get better, to fight for an answer ~ when there are better guideline sand no more tiers, there will be no more tears and no more rage.



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One thought on “Lyme Disease: What’s all the Rage about?”

  1. This was amazing to read!! Felt like I was reading something I wrote as a lymee myself. It’s hard to find the words sometimes how you feel on so many levels and this describes it perfect! I had my husband read it.

    Thank you for giving me a voice.

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