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 » NIH Program for Undiagnosed Diseases - Lyme

 - UBBFriend: Email this page to someone!    
Author Topic: NIH Program for Undiagnosed Diseases - Lyme
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
Has anyone watched this new show? My wife pointed it out to me last week. She was flipping channels and noticed this guy went through all the hell I did including a full mitochondrial myopathy work-up with muscle biopsy, skin biopsy, endless MRIs, etc.

He was a mid 40 year old male who suddenly got neuropathy, inability to exercise, abnormal EMG results and more. He has persistent diarrhea. He has been like this for 4+ years. it came out of nowhere!

He went through 5 days of intense testing. They did 10 big tests including a deep muscle biopsy there. At the end, negative for mitochondrial disease, negative for suspected celiac disease. The guy left demoralized.

Any chance these IDIOTS (if they didn't look for it) checked for Lyme disease/Babesia? If not, it's sickening. This guy had a TON of the symptoms. I believe his name on the show was Jon. Could a whole team of expert docs not consider that diagnosis? I'm not sure where he lives.

Sometimes it hits home when you hear a story so similar to your own. [Frown]

http://rarediseases.info.nih.gov/Resources.aspx?PageID=31

I don't know if it was just me, but that program seemed kind of pointless. They're trying to put a label on people just for the sake of it with no intentions of being able to help them much.

Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
/\ Just curious if anyone here went to this facility for diagnosis?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780

Icon 1 posted      Profile for Vermont_Lymie     Send New Private Message       Edit/Delete Post   Reply With Quote 
It is mind boggling how the medical establishment, as a whole, persists in its ignorance of lyme and tick-borne diseases. The IDSA has alot of responsibility for that.
Posts: 2557 | From home | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

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

Alex from the link below did part of the NIH program probably a year ago now. Naturally they were first lloking for one in a million genetic diseases. But she was too sick to actually travel to John Hopkins for the full work-up.

http://www.caringbridge.org/visit/angelsforalex

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359

Icon 1 posted      Profile for Lymeorsomething     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well, they don't believe in it so why would they look for it.

Somewhat unrelated--but many months ago I had mentioned Lisa Sander's book, Every Patient Tells a Story. In the book, there is a section in which she essentially says there is no such thing as chronic lyme.

Yet, most reviews of the book are positive. No lymies (I'm guilty too)reviewed the book.

So, yes, the medical establishment is mired in old viewpoints but we are still not answering the bell on occasion...part of the problem.

--------------------
"Whatever can go wrong will go wrong."

Posts: 2062 | From CT | Registered: Jul 2008  |  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.