When I first offered to write this book, I had no idea what kind of response I would get…and so I was perhaps a bit surprised when the first offer to share I got came from not a person but an organization that had created a fundraiser for a person.
But, hey, okay, whatever. There was a living being here with a story to be told and so I will open my book with her story.
Her name is Elizabeth C. and she is forty-two years old, which puts her in about the middle of the Lyme scale. Like many people with Late Stage Disseminated Lyme, Elizabeth went undiagnosed until her situation was especially dire.
She also suffers from Mold/Biotoxin illness, another rarely treated disorder.
This means that like many of us, she did not receive proper treatment or care or even recognition of her ailment for far too long. And I will return to the details of her illness in a moment. My goal for these tales is not to give all the attention to an illness, but rather to the people who are fully human but who just happen to suffer from an illness.
So let me tell you about Elizabeth C. the person.
Elizabeth is a psychologist and an athlete who has been lauded in both of those fields. She is single, currently unemployed, and desperately in need of medical care and financial aid. She is in constant pain and has become socially isolated. She has been in severe pain bed ridden for 6 years. She has not been able to work for 8 years.
Can you imagine this? To be alone and bedridden without care, with no attending nurses or physicians, no one to check on you or help you with the small stuff? To go without dinners out or walks in the park? To go without many of the simplest day to day pleasures AND to be so severely ill on top of that?
Closer to a decade ago, Elizabeth is described as having been a vibrant and active woman who served her community and church, provided for and raised her family, and gave very generously to those in need.
But now she is in serious medical jeopardy.
Even so, her primary spokesperson writes of her as an intelligent woman who is “continuing to attempt to figure this all out on her own, while at the same time, doing her best to take care of herself when she cannot even get out of bed much of the time.” The spokesperson also adds that “Despite all of the impossibilities of her health, the unspeakable pain, and her circumstances she remains the most loving, giving, caring, funny, and remarkable person I have ever known.”
And now for some medical details…
It seems that most of Elizabeth’s organs are shutting down, that her pain levels have reached Everest-ine heights, and that she has frequent dyskinesic twitching in her muscles, chronic migraines, systemic endometriosis – for which she has endured nine surgeries, chronic nausea, extreme light and sound sensitivity, chemical sensitivities; intolerance to heat,and excruciating bone and organ pain. She also is burdened by the curse of chronic insomnia and when she does sleep her sleep is ofttimes broken either by pain or nausea.
To add insult to injury, as is not uncommon in Lyme, the majority of her doctors do not have any idea how to treat such widespread or “rare” illnesses, so the already tortured Elizabeth also finds herself being bounced from one doctor to another, most of them completely unequipped in either the mental or physical senses for the problems of dealing with such a patient.
The bulk of AMA practitioners are just as ignorant in how to treat the conjoined and complex symptomologys of Lyme disease as the average lay person. It’s simply something they were not taught and are not being taught, how to deal with.
This, of course, just makes things more stressful, as most of us go to doctors for answers and for aid. (The rest of us go only if something major has been chopped off our bodies or if the snake rattled.)
Elizabeth also requires a near-sterile environment as her immune system is overloaded and giving out under the strain. This means that the home must be close to immaculate and free of chemicals (as someone with chemical sensitivity syndrome and EpiPen severe allergies can tell you that this in itself is a neat trick), her air purified, and her foods pure and organic.
She also requires quite a bit of in home care and basic aid just to get through the day.
In the good news category, Elizabeth now has a diagnosis and has begun a course of treatments that will hopefully extend her life and make it more livable.
She now has specialists to help her with her Lyme and with her Mold/Biotoxin Illness and has begun the process of detoxification. She is beginning with the eradication of neurotoxins and with the reduction of the systemic toxic overload that is causing her organs to fail.
Once her immune system and organs begin to function again, and only then; she will begin treatment that will eradicate the underlying diseases.
In the bad news department, seeing these specialists requires a lot of travel and a lot of money. Which brings us to the biggest non-health issue that most Lymies face, the whole stinking financial aspect of the whole equation.
Lyme has been called “the rich man’s disease” and with good reason. Treatments for Lyme are all out of pocket and frequently pay in advance.
Elizabeth is thus, predictably, broke. The rest of the web page dedicated to her tells in heartbreaking detail of her desperate need for the monies that would save her life.
Here friends, those who set up her web page, speak far more eloquently than I do on this topic, but I will note here, as we wrap up this chapter, that Elizabeth is not alone.
No insurance company, government agency, or doctor plan pays for Lyme Disease treatments. This lack of basic care coverage has spawned one of the biggest (and frighteningly quietest) health controversies of our age.
And to put it bluntly, if it were not for friends, family, crowdfunding sites, and support groups there would be no hope for people like Elizabeth or for most of the people you will meet if you continue to read this “book”.