LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » We made the paper again!....with the link

 - UBBFriend: Email this page to someone!    
Author Topic: We made the paper again!....with the link
Derek
Member
Member # 12860

Icon 14 posted      Profile for Derek     Send New Private Message       Edit/Delete Post   Reply With Quote 
The Great Lyme Masquerade

http://www.gvpennysaver.com/hometown/stories.aspx

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 ]

--------------------
Dxed ALS 2/05
Dxed Lyme/Babs 9/05
2/08 Finially Improving

"It Can always be worse...."

Posts: 51 | From Victor, NY | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
cjnelson
LymeNet Contributor
Member # 12928

Icon 1 posted      Profile for cjnelson     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good for you Derek, your mom is a true hero! Keep up the good work!

--------------------
Seeking renewed health & vitality.
---------------------------------
Do not take anything I say as medical advice - I am NOT a dr!

Posts: 830 | From TN | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
tickssuck
LymeNet Contributor
Member # 15388

Icon 1 posted      Profile for tickssuck     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

Posts: 566 | From West Coast | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
njgirl14
LymeNet Contributor
Member # 14174

Icon 1 posted      Profile for njgirl14     Send New Private Message       Edit/Delete Post   Reply With Quote 
Derek that was a good article. Congratulations! Great job getting the word out.
Posts: 262 | From nj | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
cactus
Frequent Contributor (1K+ posts)
Member # 7347

Icon 1 posted      Profile for cactus     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great article!

--------------------
�Did you ever stop to think, and forget to start again?� - A.A. Milne

Posts: 1987 | From No. VA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
susiecv
LymeNet Contributor
Member # 9702

Icon 1 posted      Profile for susiecv     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 [Smile]
Sue

Posts: 249 | From finger lakes, ny | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Larkspur
LymeNet Contributor
Member # 5131

Icon 1 posted      Profile for Larkspur     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh - awesome - great article!!! [woohoo]

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

Posts: 921 | From PA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great article!!! [Cool]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 6147 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
teresambear
LymeNet Contributor
Member # 15061

Icon 1 posted      Profile for teresambear     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 !!!!!
Posts: 115 | From warwick, new york | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
TS96
LymeNet Contributor
Member # 14048

Icon 1 posted      Profile for TS96     Send New Private Message       Edit/Delete Post   Reply With Quote 
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!

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715

Icon 1 posted      Profile for Clarissa     Send New Private Message       Edit/Delete Post   Reply With Quote 
You made my day, Derek! You're a total rock star!
[group hug]

--------------------
Clarissa

Because I knew you:
I have been changed for good.

 -

Posts: 1625 | From Florida | Registered: Oct 2003  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 14 posted            Edit/Delete Post   Reply With Quote 
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! [group hug] [kiss]

IP: Logged | Report this post to a Moderator
Derek
Member
Member # 12860

Icon 1 posted      Profile for Derek     Send New Private Message       Edit/Delete Post   Reply With Quote 
thanks everybody..............thanks betty for breaking it up

--------------------
Dxed ALS 2/05
Dxed Lyme/Babs 9/05
2/08 Finially Improving

"It Can always be worse...."

Posts: 51 | From Victor, NY | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Derek
Member
Member # 12860

Icon 1 posted      Profile for Derek     Send New Private Message       Edit/Delete Post   Reply With Quote 
up

--------------------
Dxed ALS 2/05
Dxed Lyme/Babs 9/05
2/08 Finially Improving

"It Can always be worse...."

Posts: 51 | From Victor, NY | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
pab
Frequent Contributor (1K+ posts)
Member # 904

Icon 1 posted      Profile for pab     Send New Private Message       Edit/Delete Post   Reply With Quote 
Derek,

That's a great article. I'm happy to hear you are getting better. Your mom is amazing!

Peggy

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

Posts: 2775 | From MN | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
mikej2323
LymeNet Contributor
Member # 8913

Icon 1 posted      Profile for mikej2323     Send New Private Message       Edit/Delete Post   Reply With Quote 
Derek,

Would like to talk with you about some specifics.

http://www.youtube.com/watch?v=Lq6qotHIiCM

Please view the above youtube video and contact me at:

[email protected]


Thanks.
Mike

www.caringbridge.com/visit/angelsforalex

Posts: 252 | From Iowa | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.