Topic: NIH Program for Undiagnosed Diseases - Lyme
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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.
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
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
/\ Just curious if anyone here went to this facility for diagnosis?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
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
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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.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
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
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