NATIONAL LYME DISEASE REGISTRY Site has been Started

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
LDNRadmin
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Joined: Wed 18 Mar 2009 15:50

NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by LDNRadmin » Wed 18 Mar 2009 15:58

http://ldnr.org
http://ldnr.org

The site is set up to register U.S. cases, however I encourage everyone to register on the registry in order to raise awareness of Lyme disease. The site allows you to register your diagnosis as either a Clincical diagnosis or Blood confirmed, or both. It also allow you to state the type of Dr. thats treating you, i.e LLMD, PCP, or Infectious Disease Dr.

The site was launched yesterday and I need your help in spreading the word. Please register today !

I had to set up the site to verify email addresses, so if that is uncomfortable to any of you, please, just use an email that you don't use much. In order for the site to gain respect, there are certain field that I had to require. With that said, I only verify the email address before allowing the data to go into the registry.

You can then view the graphs, charts, etc.

The goal is to raise awareness and find us all a cure. First, we have to get the world to recognize the disease.

Thanks everyone and I hope you are doing well.

Ashton

cave76
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Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by cave76 » Wed 18 Mar 2009 16:30

Ashton,

Thanks for your information. Can you let us know more about this Registry?

After a look at Google I found this:
Danbury Hospital to establish Lyme disease registry
(Mar 18, 2009)

http://tinyurl.com/c5ucng

Is this the one?

From that article:
Danbury Hospital intends to avoid the controversy within the medical community over the diagnosis and treatment of Lyme disease by taking an objective approach to the collection of data. “We want to reach out to the community and work with people with different views,” emphasized Ahmadi. “We hope this approach will satisfy critics and proponents, alike.”
More quotes:
“This registry represents the first step in objectively looking at symptoms and treatments to gain a better understanding of the true dimensions of the disease,” said John Murphy, MD, executive vice president of Danbury Hospital and a board-certified neurologist.
Ramin Ahmadi, MD, the hospital’s director of graduate medical education and research, said the registry will be “all-inclusive and scientifically based” with data from as many patients as possible
Danbury Hospital is a 371-bed regional medical center and university teaching hospital associated with New York Medical College, the Yale University School of Medicine, the Connecticut School of Medicine and Columbia University Medical Center.
On the surface this Registry sounds like a good idea. Forgive me if I sound a bit skeptical, but I've seen other good ideas implode before. However, if it's JUST raw data from actual patients AND there's to be no spin put on it by the IDSA or Yale then I'm all for it,

More information, please?

eagle
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Joined: Tue 27 Jan 2009 19:42

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by eagle » Wed 18 Mar 2009 17:05

I;m pretty sure this site was founded and belongs to GaryRN, (a/k/a LymeNurse, Gary The Nurse, Gary Engleman, etc.). He announced the launching of this site on Lymenet as well. He didn't want anyone there to know his identity either. He posted here a few times a couple of months ago advertising his LymeChatNetwork Ning.site, saying that all the latest information on Lyme treatment and Lyme issues and support could be found there. He's also got videos sharing his Salt/C protocol experiences on YouTube.

His original post on Lymenet appeared to be misrepresentative in that he signed on and told people about this new Registry but made it appear as though he was not the founder -- that he'd just found out about the site and that everyone should go look at it and participate.

I'm curious as to why there is a section on the website for donations via credit card, but there is no information whatsoever on the site as to who the owner or administrator is. Nor is there any mention of who will be given this money and what it will be used for. Gary seems to be trying to stay anonymous.

It seems unfair to expect people to provide all kinds of personal information, and perhaps money, to an entity who's owner/administrator is not revealed, the location of the entity is not revealed (no adddress, phone, etc.)., and folks aren't told where that money will go or what it will be used for.

Also, there is really no mention as to what Gary intends to do with this personal information he gathers on Lyme patients.

What type of tax status does this organization have? Is it tax-exempt or non-profit? If he's accepting financial donations, I think he should reveal and be able to provide certification of what his legal status is as an organization.

I'm not saying a national Lyme disease registry is a bad idea. I just think the evasiveness, hiding of identity, lack of clarity and definition of the organization and some of the language on the site (i.e., lots of focus on the fact that long term antibiotics don't work), is threatening to Lyme patients.

I'm afraid for anyone that might love the idea of a national registry might then be angered or disappointed when they find out that Gary is merely gathering personal info on people and will gladly accept their money .... for what?

Gary mentioned on another Forum that if people were shy about revealing their identities that they could give him their disease, location, etc. information anonymously using an anonymous email account. I don't know how valuable or verifiably accurate that information would be in the end. Not knowing the true identity or location of Lyme registrants, just leaves the entire enterprise flawed from the beginning.

What would any of the Government or Medical organizations do with this information of anonymous Lyme people, who may or may not be whom they say they are, or may or may not be located in a certain State?

A National Registry is not a bad idea. But this effort is disingenuous and sloppy, in my personal opinion.

I almost feel like Lyme patients are being taken for a ride with this one. Can't help it.

I gather from reading his recent response on Lymenet that he's gotten some complaints already from people who saw his "advertisement", signed up without really thinking, and later realized that they had been duped as far as Gary's true identity or what he would be doing with any money and personal info he obtained. He offered to delete their info from his site or something similar to that, I think, in response to those complaints.

Gary, if you read this, I really think you should reveal your identity, location, etc. for starters. If you really want to move forward with this (and I'm not necessarily saying this is a bad idea), I think you need to be as transparent as possible and the organization needs to be legit. Will you be releasing your budgetary and operating expenses and other financial information, since you appear to be setting yourself up with either tax-exempt or non-profit status and are asking people for donations? Have you had an attorney look at this?

eagle

cave76
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Joined: Sun 12 Aug 2007 2:27

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by cave76 » Wed 18 Mar 2009 17:24

eagle,

thanks:
I'm not saying a national Lyme disease registry is a bad idea. I just think the evasiveness, hiding of identity, lack of clarity and definition of the organization and some of the language on the site (i.e., lots of focus on the fact that long term antibiotics don't work), is threatening to Lyme patients.
As usual, I await enlightenment. :)

I remember Gary RN. Hasn't he been banned from here and other forums? And can 'ashton' answer, to perhaps clear up the mystery?

It pays to be suspicious until all the facts are in.

eagle
Posts: 12
Joined: Tue 27 Jan 2009 19:42

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by eagle » Wed 18 Mar 2009 17:36

Cave,

As far as I'm aware, I think GaryRn was banned from Lymenet. Evidently he's rejoined using a different name "NaturalApproach." He was also a big problem for the UnderOurSkin film director/producers on the Twitter chat one night where he participated there by making crude personal remarks to posters while advertising his LymeChatNetwork ning site. For awhile the UnderOurSkin weblog had transcripts available of their chats. Amidst all the conversation about UOS and Lyme, one can see Gary's posts and inappropriate behavior (and disciplining by the moderators), because it is shown in those transcripts. I don't know whether the UOS site still has those transcripts linked or not (I haven't looked). I don't know whether he was banned here or elsewhere.

So, Ashton, if you'd like to clear this up, it would be great. Tell us who you are, where you are, or where your organization is located, how to contact the organization (address, phone, etc.), what you will be doing with the personal info you acquire, what your legal status is, and where people can view your financial statements since you want to receive donations, that would be a helpful to say the least.

Saying that you wish to remain anonymous at this point just makes the suspicions that you have provoked in people valid.

If you really want this to work (and again, I don't think a National Registry is a bad idea!) you need to be professional about it and to it the proper, legal way.

eagle

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Last edited by eagle on Wed 18 Mar 2009 17:51, edited 2 times in total.

cave76
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Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by cave76 » Wed 18 Mar 2009 17:49

ditto

eagle
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Joined: Tue 27 Jan 2009 19:42

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by eagle » Wed 18 Mar 2009 17:51

By the way, for what it's worth, here is a link and one post from someone on one of the lymenet threads on this issue. I guess some folks are already feeling duped?

http://flash.lymenet.org/ubb/ultimatebb ... ic/1/78771


nenets_hubby
Junior Member
Member # 14415

Icon 1 posted 03-18-2009 12:25 PM Profile for nenets_hubby Send New Private Message Edit/Delete Post Reply With Quote Crossposted from general, since you did as well:

That is not the only deception - this site was not launched today. This site was posted 2 weeks or so ago, and the threads were deleted by a moderator. I will ask my questions again, as they were posted in the deleted threads.

- Who are you? There is no way to find out on your site, and the entity that the site is registered to is not in the Maryland business or nonprofit directories, even though it is registered to an MD address.

- Personal data has NO relevance to statistics. This information can be used to harm people by identifying them to their insurance companies, as well as drawing notice to LLMDs, and if you are encouraging people to submit false data, why even ask for it?

- The media, CDC, etc ONLY accept statistics provided by official channels. The use of this data toward its stated purpose on the site has no backing by the establishment, and will be ignored - so again, why do you want my full name and phone number and home address again? The official bodies do not ask for this information.


How do you expect us to trust you when you are being duplicitous, as well as asking for personal data?

Whether or not NaturalApproach's efforts are legitimate, all readers should ONLY give out personal information to websites you COMPLETELY trust. This is a basic rule of prevention for identity theft, etc.

cave76
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Joined: Sun 12 Aug 2007 2:27

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by cave76 » Wed 18 Mar 2009 18:24

eagle said:
I don't know whether he was banned here or elsewhere.
Since Gary the RN or Lyme Nurse had many posts between Jan 26 '09 and Jan. 28 '09 and that entire thread has disappeared (except on my computer) it does seem indeed that he's been banned from this forum.

eagle
Posts: 12
Joined: Tue 27 Jan 2009 19:42

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by eagle » Wed 18 Mar 2009 19:24

GaryRn was also banned from the Journal of Microbiology listserv. He admitted he's not a microbiologist, but said he wanted to talk about Lyme and the Salt/C protocol with them. During the endeavor, he proceeded to publicly embarrass and denigrate one of the academic heads of the ListServ with all sorts of untruths and character assassinations. The Department Head was from a University and he posted to the ListServ that he did not appreciate being publicly and falsely attacked in front of his peers.

I'm afraid that Gary is doing alot of damage to the Lyme movement. While he thinks his intentions are pure and right and good for Lyme activism, he's going about everything in the wrong way, using dishonesty, and fraudulent representations.

The reason this bothers me is that I'm a Lyme patient and we all know what difficulty we've had garnering credibility with the medical establishment as a whole.

Gary's methods just give fuel to the IDSA critics, I fear.

I wish he'd stop.

Martian
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Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by Martian » Thu 19 Mar 2009 14:03

The following information can now be found on the About LDNR page. I think it's a different version as yesterday.

Source: http://ldnr.org/about.html
About LDNR

My name is Gary Engelman, BSN, RN. I have been an RN for 16 years. I am a chronic Lyme disease sufferer as many of you are. I decided to create this site for the reasons below and again, to meet the goals outlined in the Mission Statement. My background is in ICU, Emergency Medicine, Coronary Care and hold a certificate in PICC certification for PICC insertion under ultrasound. I made it half way through an adult Nurse Practitioner school when my children were born and I could no longer afford the schooling. I continued to work as I had done all of my career. I was struck with chronic Lyme two years ago, but didn't realize it was Lyme until late 2008. My symptoms are many and are in line with Lyme itself, Babesia, and Bartonella. I have a clinical diagnosis from a LLMD and I am doing alternative therapy to get well.

I'm sure at some point, the CDC and perhaps the IDSA will follow the reporting on this site and it is important to keep the site credible. For this reason, I do require any and all people who wish to be part of the registry to give basic information of themselves. The information is stored online in a database on my hosting site with GoDaddy, that is well protected. If I didn't require email verification and personal information, I feel that this site could easily be discredited and would then destroy what I am trying to do for the Lyme community. As stated in the Registry Form, your information is confidential except for what is already being provided in the charts, graphs, etc. All email addresses, home addresses, and phone numbers are not and will not be distributed to anyone. There has been questions as to who was running this site and why I didn't put my name out there to start with. The reason is simple. I didn't want to fall under the same scrutiny that the LLMD's and the like are already under. Like you, I am also trying to get well and am not looking for any more headaches than I already have. I strongly believe this site will have a strong impact on getting the recognition that we all deserve.

I launched the site prematurely to officially becoming and approved organization only so that I could begin collecting data. Please be sure the paperwork has been started and it is very time consuming, so I would ask that any and all donations be held off on at this time. Once the organization has been approved for non-profit status, funding by donations will be used as outlined in the mission statement. The Lyme Disease National Registry was formed in order to accomplish the the goals outlined in the Mission Statement. While Dr.'s debate about the diagnosis of Lyme disease itself, many are needlessly suffering. It is my belief that the forthcoming data will reveal a large amount of

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