May is Lyme Disease Awareness Month
Lyme is the most prevalent vector-borne disease and one of the fastest spreading diseases throughout the United States, and the subjects of diagnosis and treatment of Lyme are politically-charged.
This series of diaries is designed to provide information to the Daily Kos community both for Lyme disease prevention and for those Kossacks living with Lyme. Because the disease is often missed by physicians, these diaries may assist an individual or two in pursuing testing which might otherwise have been missed.
The LymeDiseaseAwareness series will be eclectic including personal statements, informational pieces about the science of Lyme, and calls to action for community and political advocacy.
We hope you'll all join us in learning about this rampant disease and the medical/industrial/political morass in which Lyme patients find themselves.
The LymeDiseaseAwareness Team
Today's diary by: MsGrin
John Baiata tells a tragic, personal story of the loss of his sister, Sue:
All she lost: My sister's battle with Lyme disease
After a decade of unbearable side effects, she decided to end her life
A small quibble in your time of grief, John, what you write about is a symptom rather than a side effect:
One of the side effects she experienced was hyperacusis, a sensitivity to sound so severe that she tried to find a doctor willing to surgically deafen her.
The intense and relentless amplification of sound became too much for Sue to endure. The one treatment she found which she believed would relieve her suffering was something no doctor would agree to do. It was too much. She took her life on her second attempt.
Here's how the article describes Sue's situation:
The agony of sound
(Sue) began to develop an aversion to noises that had never bothered her before. Everyday sounds like the closing of a door or the cry of a child would cause her to cringe. A passing lawn mower or motorcycle would send her running for her room. The disease’s attack on her central nervous system had brought on hyperacusis, a severe sensitivity to sound. And it became progressively worse.
It was as if a volume dial, set on high, had broken off, and everything in her aural experience was overmodulated. Softer sounds were tolerable. Sharper sounds were not, and painfully so for her.
Hyperacusis, which can be brought on by trauma to the inner ear, is also thought to be a processing problem with the way the brain perceives sound, which seems much more likely in my sister’s case.
What Sue suffered from is a different manifestation of something I struggle with myself. Other than profound fatigue, my most disabling issue with Lyme disease is from dizziness, caused by inflammation in my central nervous system. I gather the inflammation creates confusion with sensory information collection somehow. In my case, my eyes and ears don't always coordinate with themselves or each other, if I understood correctly, which is related to why I experience dizziness. I am told that the inflammation is caused by the presence of Lyme and also by Epstein Barr and other viruses in my system. I note that Sue apparently did not feel that Epstein Barr contributed to her situation, but in my case, I am being treated with anti-viral medications as well as antibiotics. There is still medical disagreement about what exactly prompts the symptoms of Lyme and how to address them succussfully.
Dizziness is most likely for me when I'm fatigued (which happens with nearly any mental or physical exertion), but it can hit at any time out of the blue, sitting, standing, rising... my feet lose sensation of touching the ground, I feel like I'm floating, my eyes lose focus and most sense of depth perception, and I feel throbbing or whooshing in my head and often hear static. After five years of being told this is all imaginary or because of depression, I finally found a doctor who knows what causes it. I know that it is related to hypersensitivity. Auditory tests were performed to demonstrate that this is at play for me and my physical responses measured. My doctor started his career as a neurosurgeon and decided he could help more patients by not cutting, he got to know nerves and what disturbs them and how to make them right in a new way.
John begins Sue's story:
Sometime in the mid 1990s, my sister contracted Lyme disease, likely through being bitten by a deer tick or black-legged tick. The bacterium that had introduced itself to Sue’s bloodstream went undetected, and then was misdiagnosed for the better part of two years.
Identified early, a short course of oral antibiotics will cure the majority of cases of Lyme disease — more than 27,000 cases were reported in the U.S. in 2007 — and wipe out the typical symptoms of headaches, fatigue and a circular rash near the area of the bite. But left untreated, the disease can affect the heart and nervous system, causing joint pain.
Sue faced a parade of symptoms including migraines, severe pain in her neck and major joints and staggering exhaustion. Each one narrowed the prism through which she lived her life. Sue had to leave her job as a facilities manager to go on disability, and lived with my mother in the Long Island home where we were raised. On her good days, she would spend hours in the gardens she had lovingly cultivated in the expanse of the backyard. More than likely it was there too where the tick which bore the disease that would seal her fate attached itself to her.
If you've been following the series, you'll recognize this problem. Like so many of us with Lyme, the nature of Sue's illness was misidentified, keeping her from prompt treatment:
One of the enduring frustrations for my sister, and for those of us who loved her, was the failure of her doctors to recognize what was wrong. She was misdiagnosed twice in the early stages of the disease — once with Chronic Fatigue Syndrome, the second time with Epstein-Barr virus. She was accused of exaggerating her symptoms to avoid work, or inventing them in order to get pain medication. By the time anyone thought to give her a definitive blood test for Lyme, the disease was on the march.
Like so many of us, I'm sure Sue did not 'look' sick, although her suffering was an extreme debilitation to her. Her perception of sound removed her ability to live at peace in and with herself.
We are running the LymeDiseaseAwareness series specifically to bring attention to the plight of people who suffer as Sue did, hoping that more of us will receive prompt diagnosis and treatment which brings recovery and restores the full breadth of our lives.
Rest in peace, Sue. Blessings to your family, John, so very sorry for your loss and grateful for your sharing Sue's story with us.
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