Derek Van Wyk was diagnosed in 2004 with Lou Gherig's disease (ALS), given 3-5 years to live, and sent home to get his ``house in order.'' Not wanting to die at 34, Derek began researching his symptoms and found, as the doctors also admitted, that he was atypical ALS - not deteriorating fast enough. After much research, thought, and deliberation, he contacted a doctor in PA who diagnosed him with Lyme disease. Derek's symptoms began as twitching and loss of muscle mass/strength. He was treated by the PA doctor for 2 years and has since switched to a doctor in Hyde Park, NY. This new doctor was able to treat him more aggressively (antibiotics via a catheter to his heart). Currently, he is making improvements; it's a slow progression with no guarantees, but he's headed in the right direction.
Many people are aware of Lyme disease, but do not realize that it can lead to serious conditions such as Derek's. That is why his mother Corky is so passionate about educating others about this debilitating disease. She explained, ``My concern was support - he seemed the only person in the state that had this disease and no real person, with a face, to talk to. I found and called the Empire State Lyme Disease Association and talked to the president. She stated that there were no support groups in this area, but [suggested] I could start one.'' Last October, Corky founded The Finger Lakes Lyme Group, the first local chapter of the Empire State Lyme Disease Association.
At its July 20th meeting, The Finger Lakes Lyme Group viewed the recent documentary video, Under Our Skin. The film explained why Lyme disease is one of the most misunderstood and controversial illnesses of our time. Because Lyme is difficult to test accurately, tens of thousands of people go undiagnosed - or misdiagnosed with such conditions as fibromyalgia, chronic fatigue syndrome, autism, MS and ALS. The Centers for Disease Control admits that more than 200,000 people may acquire Lyme disease each year - a number greater than AIDS, West Nile Virus and Avian Flu combined. And yet, the medical establishment - with profound influence from the Insurance industry - has stated that the disease is ``easily detectable and treatable'' and that ``chronic Lyme'' is some other unrecognized syndrome or a completely psychosomatic disorder.
``Under Our Skin is a powerful and often terrifying look not only at the science and politics of the disease, but also the personal stories of those whose lives have been affected and nearly destroyed. From a few brave doctors who risk their medical licenses, to patients who once led active lives, but now can barely walk, the film uncovers a hidden world that will astound viewers.
``While exposing a broken health care and medical research system, the film also gives voice to those who believe that instead of a crisis, Lyme is simply a ``disease du jour'', over-diagnosed and over-treated. As suspenseful and hair-raising as any Hollywood thriller, Under Our Skin is sure to get under yours.'' It has been recognized at numerous film festivals.
The Finger Lakes Lyme Group meets from 2-4:00 pm on the third Sunday of each month at the Farmington Town Hall. Their next scheduled meeting is August 17th. For more information, call Corky at 924-3558 or email [email protected].
[ 12. August 2008, 10:29 AM: Message edited by: Derek ]
Posted by cjnelson (Member # 12928) on :
Good for you Derek, your mom is a true hero! Keep up the good work!
Posted by tickssuck (Member # 15388) on :
Wow Derek...what a story. So great to see your newspaper doing an article. Thanks to you for getting the word out!
So happy to hear you're finally seeing improvement. Wishing you continued success with your tx. TS
Posted by njgirl14 (Member # 14174) on :
Derek that was a good article. Congratulations! Great job getting the word out.
Posted by cactus (Member # 7347) on :
Great article!
Posted by susiecv (Member # 9702) on :
Wow, that's terrific, Derek!!! Where was this published- in the D& C? Will try like heck to make one of the meetings in the fall. Hope you are feeling better & better daily Sue
Posted by Larkspur (Member # 5131) on :
Oh - awesome - great article!!! Posted by aklnwlf (Member # 5960) on :
Great article!!! Posted by teresambear (Member # 15061) on :
That is great Derek maybe you can change the life of someone reading the article diagnosed with ALS and give them hope. Keep it up!!!!!!!BEST of health to you !!!!!
Posted by TS96 (Member # 14048) on :
Derek, I believe your story has already helped many! I just sent this article to my friend who's brother has been diagnosed with ALS about 6 mo ago.
I am told he is slowly opening up to the thought it could actually be lyme. I'm praying he reads this and gets the help he really needs.
See ya at the meeting!
Posted by Clarissa (Member # 4715) on :
You made my day, Derek! You're a total rock star! Posted by bettyg (Member # 6147) on :
breaking up to read
quote:Originally posted by Derek:
The Great Lyme Masquerade
Derek Van Wyk was diagnosed in 2004 with Lou Gherig's disease (ALS), given 3-5 years to live, and sent home to get his ``house in order.''
Not wanting to die at 34, Derek began researching his symptoms and found, as the doctors also admitted, that he was atypical ALS - not deteriorating fast enough.
After much research, thought, and deliberation, he contacted a doctor in PA who diagnosed him with Lyme disease.
Derek's symptoms began as twitching and loss of muscle mass/strength.
He was treated by the PA doctor for 2 years and has since switched to a doctor in Hyde Park, NY.
This new doctor was able to treat him more aggressively (antibiotics via a catheter to his heart).
Currently, he is making improvements; it's a slow progression with no guarantees, but he's headed in the right direction.
Many people are aware of Lyme disease, but do not realize that it can lead to serious conditions such as Derek's.
That is why his mother Corky is so passionate about educating others about this debilitating disease.
She explained, ``My concern was support - he seemed the only person in the state that had this disease and no real person, with a face, to talk to.
I found and called the Empire State Lyme Disease Association and talked to the president. She stated that there were no support groups in this area, but [suggested] I could start one.''
Last October, Corky founded The Finger Lakes Lyme Group, the first local chapter of the Empire State Lyme Disease Association.
At its July 20th meeting, The Finger Lakes Lyme Group viewed the recent documentary video, Under Our Skin.
The film explained why Lyme disease is one of the most misunderstood and controversial illnesses of our time.
Because Lyme is difficult to test accurately, tens of thousands of people go undiagnosed - or misdiagnosed with such conditions as fibromyalgia, chronic fatigue syndrome, autism, MS and ALS.
The Centers for Disease Control admits that more than 200,000 people may acquire Lyme disease each year - a number greater than AIDS, West Nile Virus and Avian Flu combined.
And yet, the medical establishment - with profound influence from the Insurance industry - has stated that the disease is ``easily detectable and treatable'' and that ``chronic Lyme'' is some other unrecognized syndrome or a completely psychosomatic disorder.
``Under Our Skin is a powerful and often terrifying look not only at the science and politics of the disease, but also the personal stories of those whose lives have been affected and nearly destroyed.
From a few brave doctors who risk their medical licenses, to patients who once led active lives, but now can barely walk, the film uncovers a hidden world that will astound viewers.
``While exposing a broken health care and medical research system, the film also gives voice to those who believe that instead of a crisis, Lyme is simply a ``disease du jour'', over-diagnosed and over-treated.
As suspenseful and hair-raising as any Hollywood thriller, Under Our Skin is sure to get under yours.'' It has been recognized at numerous film festivals.
The Finger Lakes Lyme Group meets from 2-4:00 pm on the third Sunday of each month at the Farmington Town Hall. Their next scheduled meeting is August 17th.
For more information, call Corky at 924-3558 or email [email protected].
Derek, OUTSTANDING ARTICLE!! wonderfully and informatively written especially dwelling on UNDER OUR SKIN, etc.
CORKY, you're the best! keep it up MOM! Posted by Derek (Member # 12860) on :
thanks everybody..............thanks betty for breaking it up
Posted by Derek (Member # 12860) on :
up
Posted by pab (Member # 904) on :
Derek,
That's a great article. I'm happy to hear you are getting better. Your mom is amazing!
![[Smile]](smile.gif)
![[woohoo]](graemlins/woohoo.gif)
![[Cool]](cool.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)