bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
When I tell people I had lyme disease I get either a blank look, or an assumption that I had the flu for a week.
People have heard of it, and have already made up their minds about what it is or isn't.
Lately I've started telling people:
"I had neuroborreliosis.
It's an antibiotic resistant brain infection that's a complication from undiagnosed lyme disease."
People, even friends in medical professions, seem to be much more curious and sympathetic about the disease with the longer name.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Technically, if you have objective evidence of encephalopathy, it is called "treatment resistant neuroborreliosis".
This is the term that mark klempner and durland fish use. They differentiate between this entity and what they call 'chronic lyme'. To them, they are not the same thing.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
That is what I had- treatment resistant neuroborreliosis!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
This is funny, this is similar to what I also tell people...which is true. But instead of saying "brain infection" I say an antibiotic resistant systemic (body-wide) central nervous system infection.
If they ask what that means I give them the "medical dictionary" definition: neuroborreliosis - Inflammation or disease caused by an infection of the central nervous system by a member of the genus Borrelia. It is frequently a late stage in the disease process, particularly in immunosuppressed individuals, such as those suffering from AIDS.
posted
Great ideas on how to explain this. Thanks.
Posts: 233 | From United States | Registered: Oct 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I for one...
would'nt include the immunodeficient as those with AIDS in your explanation.
My immune system seems to work just fine with everything else and I have diabetes2 to boot!
My only problems are from TBD's.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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My kids say mommy is sick from tick spit. I just say Neuro-Lyme.
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