My husband got called to do the ice bucket challenge
yesterday. Within an hour, he found a
live tick crawling on his skin. This completely horrified us, as I have been
overwhelmed this last year trying to fight chronic Lyme disease and to get my
life back. I’ve been avoiding jumping
into this ALS “conversation”, but I’m taking that tick as a sign to step up to
this challenge, and to add a twist of Lyme to the mix.
Starting with Robin Williams’ suicide/Parkinson’s diagnosis,
and continuing with the ALS ice bucket challenges, the Lyme group boards have
been abuzz lately. There have been many
posts referencing some evidence that other diseases could be caused by Lyme
spirochetes – namely Alzheimers, ALS/Lou Gehrigs, Parkinsons, Fibromyalgia, Rheumatoid Arthritis, and
Chronic Fatigue Syndrome.
Here is a link to the award-winning documentary about Lyme
disease, Under Our Skin. If you only watch one minute of it, fast
forward and watch between 46:30-47:30. This is a doctor who was diagnosed with
ALS and given 2 years, who dug deeper and discovered he was infected with Lyme,
and is now living a much more functional and productive life after treatment:
Did you know there are many more Lyme cases than
HIV/AIDS? Than West Nile? What about all the people that are still
undiagnosed (like me last October)? And
what if Alzheimers, MS, Parkinsons, ALS, Fibromyalgia – what if just one of
those diseases was also caused by Lyme disease – how many more cases would that
be?
Think about it – none of these diseases have named
causes. Most of these diseases are
clinically diagnosed. I believe with
every fiber of my being that there is a cause for all disease. So WHAT IF it is Lyme, or some other type of
infection? What do these people have to
lose by testing themselves for Lyme, too?
It is really, really hard for a healthy person to imagine
losing their mind or to imagine being told they have a terminal disease – an
UNTREATABLE terminal disease. Doctors diagnose
people with these diseases, but they don’t have any medicines to make it stop
progressing, like there is chemo for cancer.
Patients are just supposed to go home and deal with watching life slip
away. They diagnose them with no hope.
The problem is, most of these no hope doctors wouldn't even consider testing them for Lyme disease, because a large portion of the managed healthcare profession follows along with the CDC-approved ISDA guidelines for treating Lyme. Short story: they don't believe that Lyme takes longer than a month to kill, even when there are thousands of us out there, still experiencing crippling symptoms even after months of (self-paid) treatment. They call Lyme the Rich Man's Disease, because no one else can afford to treat themselves, and insurance companies won't pay!
The problem is, most of these no hope doctors wouldn't even consider testing them for Lyme disease, because a large portion of the managed healthcare profession follows along with the CDC-approved ISDA guidelines for treating Lyme. Short story: they don't believe that Lyme takes longer than a month to kill, even when there are thousands of us out there, still experiencing crippling symptoms even after months of (self-paid) treatment. They call Lyme the Rich Man's Disease, because no one else can afford to treat themselves, and insurance companies won't pay!
I do admit to knowing these proposed connections between Lyme
and all these diseases for some time now.
I haven’t shared the information, because it’s controversial. Because I’m already living a very controversial
life as it is, being unconventionally treated for an infection that many doctors
won’t treat. No one wants to hear about it.
I get that. But I’ve also experienced losing my mind to a degree - at my worst, I couldn't balance on my tiptoes, I couldn't remember any of my childhood, even teenage years, and I was having trouble concentrating on normal tasks, like paying bills and making a grocery list. I've had to resort to unconventional means to do so, but I AM getting better. There is hope.
I'm going to step out there and share this controversial information, because if I can help just one person who is suffering right now, someone who may feel really hopeless, maybe as hopeless as Robin Williams felt – it will be worth it.
I'm going to step out there and share this controversial information, because if I can help just one person who is suffering right now, someone who may feel really hopeless, maybe as hopeless as Robin Williams felt – it will be worth it.
And I thank you for considering sharing it yourself, with
anyone you know who has received a hopeless diagnosis. Share the possibility of hope for these
people!
P.S. If you want to
donate to Lyme research, here are a couple of good organizations:
http://ilads.org/giving/giving-help.php
http://lymelightfoundation.org/fundraising/donate/
No comments:
Post a Comment