Topic: Lyme Disease National Registry Back Online http://ldnr.us
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I had to redesign the site with the help of a web developer.
Some changes were made to make the site better then it was before.
We are up and running, please spread the word.
Those of you concerned about your personal info. I would ask to at least use a good email. I don't personally care right now about your real name, address, etc.
I just want to get the data of who has Lyme. In two years or so, maybe sooner, we can have the CDC take a look at it.
This is not just for those of you being treated by an LLMD or ND. Even if your Dr. is IDSA, there is a good chance your case didn't get reported to the CDC.
The Registry has Co-Infections now. I had to focus on Lyme, Babs, and Ehrlichia, and gave an option for Other as there are so many other infections.
Still working on a few things, but nothing that will prevent your Data from getting into the Registry.
Please remember to Verify your email or the Data does NOT go in.
If you have more then one infect family member, then use a 2nd email address. You can always go back in and change information.
Also, you might want to Bookmark the News Link. The site is set to pull the Hottest Lyme articles from the Net daily. Kind of like your morning paper. If there is a hot Lyme story, be sure it will be in the News section. It's robotic, so it pulls based on Keywords and hit counts.
Best to everyone,
Gary Engelman, BSN, RN
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Is everyone signed up? If you had concerns about this, please let me know.
Is the site associated with LDA or other lyme advocacy/research?
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I looked at the site...it seems very against long term antibiotics. Is this registry really going to help or hurt us?
The studies quoted showed no benefit to long term abx.
We have enough to deal with getting abx....what is the point of your registry?
Posts: 1276 | From maryland | Registered: Jan 2009
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
thanks beths
I read through the site and see what you mean.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
A prominent Lyme Doctor had this to say about long term antibiotic use:
"Chronic use of antibiotics can lead to toxic levels, overload on the liver and kidneys and also cause fungus overgrowth in the body. The side effects can mimic the symptoms of Lyme disease."
He did treat with long term antibiotics but was quite frank about the effects.
IMHO I think it can come to the point that it would be difficult to distinguish between Lyme symptoms and the toxic effects of long term use.
I think the registry is a good idea, however, I am very hesitant about putting my name anywhere on the internet, especially after having found alot of unwanted information on the net when doing a name search. Once it's out there, it's very difficult to have it taken off.
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