May is Lyme Disease Awareness month. While some may tire of the constant postings shared on social media by those of us in the Lyme community, there are many reasons we advocate so fiercely. The following might provide a small glance into the world of chronic Lyme disease.
Think for a moment of your child, your spouse or partner, a close loved one or friend. What if they were battling an illness that left them bedridden, suffering, and in pain 24/7? What if this happened to you?
Consider now – the all too common scenario faced by almost every Lyme patient: You or your loved one lying in a hospital bed shaking and trembling from a neurological seizure; writhing in deep bone and muscle pain; chest pain and pressure; difficulty breathing; unexplained fevers and chills, then rushes of hot flashes and sweats; dizziness and vertigo that comes over you in waves; brain fog and confusion; severe headache or migraine; extreme nausea; debilitating fatigue; blurry vision; panic attacks. (Only a few common symptoms – ones I can attest to personally.)
All of the above happening with medical professionals unable to figure out what is wrong, as all tests are “normal”, including a negative Lyme test in the mix. Perhaps you might even inquire about Lyme disease, because by now in your quest to find wellness you have Googled every possible disease known to man. Probably being told you don’t have Lyme, because “your test was negative”, or better yet, “there is no Lyme disease in this area”.
But that’s okay (she writes sarcastically), if you’re lucky, maybe your physician will decide to appease you and prescribe a single dose 10-21 days of doxycycline, along with the reassurance “you should feel better within 30 days”. Oh, and “here’s a script for your depression”. Basically sending you on your way, as quickly as possible, to fend for yourself. Side note: umm, yeah we’re depressed. We’re sick – and miserable – and no one seems to be able to figure out why. Thanks for the patronizing compassion!
For most of us living with chronic Lyme disease, all of this and more can be our reality. Multiple ER visits, countless specialist referrals, endless diagnostic testing, all to no avail. We are left to suffer and research on our own; searching to find a physician or practitioner who is knowledgeable and properly trained to clinically diagnose, treat, and advocate for your wellness.
If testing were not flawed and unreliable, Lyme disease – by all accounts – should be diagnosed and properly treated in the acute phase. This, however, is not the case. Current indications: up to 50% of patients tested for Lyme disease receive false negative results. (ILADS.org)
I am one of the 50%. Technically, I’m an unlucky repeat fifty-percenter, receiving multiple false negative test results using the two-tiered testing system (ELISA and Western Blot). One of the false negative tests results I received was from Mayo Clinic, Minneapolis. Mind you, ALL of my false-negative test results occurred between 2000-2002. It’s been 17 years, and the same flawed and unreliable testing is still being used today by most practitioners and medical facilities. Seem a little absurd – yes? Improved testing methods are being developed, but we are still lacking an FDA approved Lyme disease smoking gun, as it were.
If all physicians were educated and trained to assess and give proper clinical diagnosis of Lyme disease, and not bound by grossly outdated guidelines set forth by the CDC – regardless of the flawed diagnostic testing – fewer cases would advance to debilitating, late-stage, chronic, incurable cases.
In a perfect world, there would be no disease. But there is no such perfect scenario here on earth. The advances in research and therapies for cancer, HIV/AIDS, and other infectious diseases has been monumental. Lyme disease – the persistent and chronic state of infection, and the multiple co-infections that accompany most Lyme infections – should be elevated to receive the desperately needed funding for clinical research. The graph below shows number of cases vs. funding. As a normal human can ascertain, Lyme disease research is grossly underfunded.
Based upon current data, we are facing increases in Lyme disease cases reported annually that are equivalent to epidemic levels within the U.S., and pandemic qualifications world-wide. And this data does not include the climbing number of cases that go unreported due to unreliable testing.
There are positive movements being made at state legislative levels, and now on a federal platform as well, thanks to the passing of the 21st Century Cures Act. “The Act requires Health and Human Services to support research related to tick-borne diseases and to establish a working group comprised of representatives of federal agencies, physicians and researchers, as well as patients, their family members and organizations that advocate on patients’ behalf.” (Press release from office of Senator Richard Blumenthal, April 20, 2017, LymeDisease.org)
Those inflicted or are caring for someone suffering with chronic Lyme disease are persistent in advocating and promoting awareness. Sadly, it’s out of necessity. During the month of May in particular, we ask of others who might not be directly affected by Lyme to give pause; think of the millions who are having to climb preposterous obstacles in search of proper diagnosis and treatment. And in most cases, having to pay out-of-pocket for arduous and expensive medical care. It is beyond maddening! This is why bringing more awareness to Lyme disease and all tick-borne diseases is so important.
There will be many Lyme Disease Awareness and advocacy campaigns throughout the month of May: galas, benefits, and organized walks to help raise funds for national and global Lyme Disease organizations geared toward research and education. There will be marches in D.C. and throughout the nation. Social media will be Lyme green with various awareness campaigns. We – the Lyme community – ask that you consider jumping on the bandwagon to help raise awareness and advocate for our cause: more research funding, reliable testing, and medical coverage – to highlight only a few primary concerns. Change comes about through relentless advocacy at ANY and ALL levels.
One final Lyme Disease Awareness note: Lyme disease and other vector-borne illness(es) can be transmitted not only by ticks, but by mosquitoes, flies, spiders, fleas, and mites. Prevention is key! Know the signs and symptoms, and please remember – the classic bullseye rash presents fewer than 50% of the time. If you experience flu-like symptoms, especially during the summer months (knee pain and swelling is also a sign), even if you don’t remember a bite – please seek treatment immediately.
Please take the time to reach out to someone you know who might be suffering with Lyme disease or any chronic illness. Let them know you care and are there for them. One day you too might find yourself in need of such understanding and care. Thank you!
Until my next Blathering….Wishing you all wellness!
Terry 💚 The Blathering Lymie
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* Updated April 21, 2017