posted
To all my friends: Would you mind writing on the IDSA's wall to ask them to review their Lyme treatment guidelines? I (and thousands of other Lyme victims) would appreciate it! Thanks
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Once posted, does the IDSA then have our email addresses and other personal details?
I've had enough trouble with just my initial, very basic, facebook sign-up leading to my email getting hacked twice -- that I'd be very hesitant to give the IDSA any information about myself.
That could lead to lots of trouble. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Besides which, apparently they have already deleted hundreds of Lyme posts!! What else is new?
Posts: 3771 | From around | Registered: Mar 2008
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posted
I don't see any harm in it... I also posted my name and suggestions that will fall on deaf ears. I really don't see what else they can do to me or anyone else. Deny treatment? Blacklist from hospital care? Some of my friends and family also are voicing their grievances. I think that's great.
Posts: 184 | From taking pills | Registered: Oct 2011
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posted
Nevermind.just checked. my post from 10:15 was deleted.
Posts: 184 | From taking pills | Registered: Oct 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
In,
We can only give you the benefit of our experience and offer advise that is designed to save you trouble in the future.
You certainly have the right to choose to accept it or not. If you don't, however, please be aware you will be responsible for what may happen to others you've notified who ignore advise.
Rumi, Keebler and I have only the patients best interests at heart (which is why we spend countless hours here volunteering), backed by years of experience.
Please remember, sometimes what you don't see in front of you is what can come back to bite you later.
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/
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