" Unfortunately, patients may have neurologic Lyme disease but test negative on the Lyme index. When positive however, the clinician can be confident that this particular individual has or has had central nervous system Lyme disease."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Key word: WHEN positive.
I wish it had said how very a poor a test this is for Bb, though. When negative, too many with lyme have been dismissed.
A negative CSF test can not rule out lyme, though (much against what the IDSA will say).
They should have had that in bold. This may be very misleading in that qualification and lead to some pain and misery for many.
Another hiccup: " . . . has or has had central nervous system Lyme disease. . . . "
"or HAS HAD" can also be the dismissal of treatment consideration. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yeah, there are some good points here but it's still not accurate enough to create a document that can cause many to fall through the cracks.
Bb is not very likely to show in CSF even with the best testing methods. It runs; it hides. And when that is not acknowledged, it creates a dangerous omission. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Taking a big sigh....
At this point- it is or it isn't.
They can't make this whole situation any more confusing than it is, and I believe are going to do what they want to do.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Columbia's "Lyme" program is terrible IMO. They straddle the fence of IDSA dogma and somewhat Lyme friendly way too much. Self-serving, if you ask me.
Plus, they are way too expensive and don't treat Bb. I know people who clearly had and have Bb & co, but after spending a LOT of $$ here were told they didn't have it---arghhh!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic