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

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by LDNRadmin » Fri 20 Mar 2009 16:27

Many LLMD's have emailed me thanking me for starting this well needed site. In fact, one of the Dr. is very well known to all of you. So, while some of the skeptics out there denounce the site, I am getting great support from many including the LLMD's themselves. In addition, the link to my site has now been placed on many other support groups. Here is the updated "About Us" section. I waited for the feedback, made the changes to try and satisfy all concerns, and yet some of you still don't support the site. But thats o.k., because this is about freedom of choice and those that don't want to participate, don't have to. Certainly, no harm can come from this site, but only good, which would help everyone on this site and in the U.S. So here you go.....

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 data showing that most people with chronic Lyme disease are receiving care from LLMD's and the like, and not by MD's affiliated with the IDSA. I ask that you help me spread the word on this site so that we can get the data that we all know is in line with what I am saying.

I want to disclose that I live on disability. I am not affiliated with any insurance company or other organization that has anything to do with Lyme disease or the like. I am making significant progress with my own treatment, but be sure that even once I am well, I will continue with this site and advocate on behalf of the Lyme community. When I reach this point, I will shift my career to a focus on Lyme disease. Just like breast cancer survivors become advocates for others, I will be a Lyme disease survivor and do the same. When I am well I plan to continue raising awareness by holding my own seminars, scheduling appointments with psychiatrists and other physicians, who misdiagnose patients that actually have Lyme disease, and instead, hand out diagnosis that fall secondary to Lyme disease.

If anyone is interested, I have a Lyme disease support group. You can visit this site by Clicking Here. This support group has alot of information on Lyme disease and alternative approaches to getting well. This site was also recently launched and has a dedicated chat room which is open 24 hours/day, and I do schedule chat session times for everyone to come in at a preset time to talk about Lyme and whatever is on your mind.

I have also researched and made videos on both anxiety and depression, which is originally what I thought I had. I have researched both of these conditions in great depth, including pharmaceuticals and how they work in the brain at the neurotransmitter level. If anyone is interested in watching these educational videos they can be found by Clicking Here.

Now that my research has turned to Lyme, I have also began to make videos about Lyme disease. All of these videos can be found on the video link at my support site above, however some of them can be found on youtube by Clicking Here.

Some have asked why am I doing all this when I should be focusing on getting myself well. Let me answer this with a short story: I lost my brother who was just 39 years old to lung cancer in December of 2006. To make a long story short, there were reports dating back to 2001 showing this cancer, but he wasn't told about it until 2005. Had he not been misdiagnosed, I believe he would be alive today, as the cancer would have been treatable at a stage 1 instead of a stage 4, which is what he had when he was finally told about his condition.

In my own case, I went into a deep depression when he passed away. I honestly believe, the Lyme was there all along, as I had some symptoms that started before my brother even became ill. I believe that when my brother passed away, my immune system became surpressed and the dormant Lyme disease was able to come out in full force to make me sick in the ways that many of you are. Many I have spoken to have also had a traumatic event occur just prior to their Lyme coming out, as mine did. With regards to my brother, I have seen these kind of mistakes made many a time in my career as a nurse. So not only was my brother misdiagnosed, but so was I. As an RN, I am use to helping people. And just because I am sick, doesn't mean that I don't want to continue to help others. It's like any other profession, if you enjoy what you do, you will try and do it at all costs. I am passionate when it comes to helping others and I will leave it at that.

Let me finish by stating that I don't proclaim to be an expert on Lyme disease, anxiety, or depression. With that said, I have done tons and tons of research on all of this. There are many unknowns out there, and I honestly don't believe anyone is a true expert in any of this. If there were, than there would be a golden standard and we would all be well. So, if you visit my sites and watch my videos or read my blogs, please remember that anything and everything I say is just my own opinions based on the research I have done. Be well, stay strong, and we will win this battle.

Gary Engelman, BSN, RN

Claudia
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Location: Connecticut, USA

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by Claudia » Fri 20 Mar 2009 17:07

LDNRadmin wrote:Many LLMD's have emailed me thanking me for starting this well needed site. In fact, one of the Dr. is very well known to all of you. So, while some of the skeptics out there denounce the site, I am getting great support from many including the LLMD's themselves.... Certainly, no harm can come from this site, but only good, which would help everyone on this site and in the U.S.
In the spirit of honest and open disclosure, please post the names of these "many LLMD's" that have written you in support of your registry.

Thank you.

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

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by eagle » Fri 20 Mar 2009 17:13

Don't know whether I'd use the word "denounce," necessarily, Gary. Many, many people had problems with the obvious deception you were using when launching this site by not revealing your identity, nor the status or location of your organization. You've attempted to post anonymously on many support group websites announcing the launching of your website. So to say that other support groups are spreading the word isn't truthful. YOU'VE been spreading the word on those sites. Let's be honest here. And you've been misrepresenting yourself on those sites by not fessing up and saying you were the creator and founder.

People don't try to hide things unless they have something to hide.

By the way, what do you plan to do with the financial donations? You'll need to publish on your site your certification of non=profit, or tax-exempt status as an organization when you get it. You'll also have to list your Board of Directors and reveal financial/budgetary status, when it's requested. You'll have to be able to produce documentation supporting your operation as a result from a IRS audit too. Setting yourself up in a proper legal way is important. If you provide the necessary information and apply due diligence legally and fiscally, then the endeavor will not appear so slip-shod or suspicious.

Lastly, on those graphs you are generating, it might be helpful to footnote or reference how many Lyme patients the data represents. Currently, I see no mention of the population number that your data represents. Also, the fact that patients are self-reporting to this site and there is no real way to verify or validate that they are, indeed, Lyme patients in concerning. You've told people that they can do this anonymously. That is not disclosed on the data graphs either.

I don't know how helpful data would be when so much demographical and verifiable info is lacking. How many people are self-reporting? Where are they located? And I seriously doubt the CDC or ILADS would use your site, as you say you expect, with all the missing information. The CDC and any medical boards or government entity would tend to use data that has been accrued in a more controlled way, I'm afraid.

Anyway, Doctor B has been working on a Lyme patient database in connection with ILADS for years. So this isn't a new idea.

Be careful how you go about this. We Lyme patients have it hard enough with getting treatment, finding good doctors to help us, getting medical insurance, disability, etc. If you don't do this properly, you could really make anyone who contributes personal information to your site vulnerable in a lot of ways.

Simply saying that you intend to keep their identities secret is not enough. Websites have been forced by law to turn over identities of members posting and contributing before, and it could happen again with you.

It's kind of dubious that you refused to reveal your identity until you were literally called on the carpet about it by other people.

Finally, who are the "many LLMD's" that you say have supported you? (And don't say that you can't reveal their names because you are protecting them!). You can list initials and locations, you know. I know from previous posts you've made on the internet, that you tend to layer most of your ideas with, uh, a type of grandeur to try and give them credence.

You need to support what you say and use verifiable facts, Gary. The way you're going about this is just too suspicious to me. Sorry to be so blunt.

As I said, I don't think a National Registry is a bad idea -- but it's already being done by ILADS!

If you insist on going forward with this, get a lawyer and find out how to do this properly!

LDNRadmin
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Joined: Wed 18 Mar 2009 15:50

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by LDNRadmin » Fri 20 Mar 2009 19:58

Let me address a few of the concerns and then I will no longer defend myself as I have nothing to hide at this point and hopefully I can put some of this to rest. BTW, if Dr. B has had this idea and creates a better site than I hope he does. The better the site, the better the outcome.

1. Anything and everything I do is for the Lyme community which includes myself.
2. My intentions are good
3. I will not mention the Dr.'s who have personally written me as I will not expose them to the low profiles they wish to keep. Even if I give the initials, that leaves them open to receive negative emails from people like eagle on here. Why should I exploit another person. If you don't wish to believe what I say, than that is up to you.
4. If I chose to remain anonymous, it was because I was trying to keep a low profile myself.
5. From the very beginning, I have been chastised by a select few who have it out for me for reasons I can not figure out.
6. I am not nor did I ever claim to be an expert on the subjects I post about
7. I do a lot of research and try and share it with everyone else to help them along in their journey to get well.
8. I have put my face on youtube and have put myself out in the public arena to help others when no one else has.
9. I don't care about the select few that attack me, as the majority of people support and commend me on what I have done.
10. No matter what I do, there are some that will find something wrong with it and that just how the world is.
11. I have broken no laws and will not break any laws in the future so I have no legal worries.
12. I am sick with Lyme and Co. and trying to get well myself, so if you look back at my posts on Lymenet U.S., you will see I ask questions about symptoms and treatment for myself, so that I may also get well.
13. I am not seeking glory or fame from any of this as some have indicated. I am an RN and I spent my entire career helping people and I will continue to do so as long as I am alive and able to do so.
14. I am 100% type A personality, so keep that in mind when you read what I write. I'm sure some of you have figured that out by now. Don't confuse confidence with expertise !
15. I lost my brother to lung cancer as he was misdiagnosed for 4 years and would be alive today if he had been told sooner about his illness. With that said, I was misdiagnosed with my Lyme as many of you were. There are plenty more out there that have yet to be diagnosed and I will do whatever I can to make them aware of this horrible disease as I find them.
16. No one thought twice to write my full name in here or on lymenet U.S., yet everyone complained that they didn't want to be identified on the Registry, explain that. What gives you the right to put my name out in public ?
17. I shared pictures of success I was having with Salt/C to help others, yet again, I was shot down, why ?
18. If I am getting better from a therapy don't you want to know about it ? And no one can ever say that I said Salt/C or Rifing is the only way to go.
19. From what I have read, Antibiotics don't seem to work for many people and I have shared that with many. So if your doing antibiotics, I'm not trying to destroy your hope in getting well, I'm just sharing my findings. I do know of cases where people have gotten better and they are no longer posters because they are back to their normal lives. I am happy for them and I wish the same for you.
20. I chose Salt/C and Rife because I saw and see many people getting well quicker. Everyone I have spoken with on these protocols is better in some way shape or form, don't you want to know this whether you choose it or not.
21. I could make this list go over 100, but I've said enough, so good luck in getting well. I don't know any of you personally and I hold no grudges against any of you.

Gary

eagle
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Joined: Tue 27 Jan 2009 19:42

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by eagle » Fri 20 Mar 2009 20:25

LDNRadmin wrote:BTW, if Dr. B has had this idea and creates a better site than I hope he does. The better the site, the better the outcome.
You can't be serious? "If Dr. B has had this idea and creates a better site?" Here Gary, see for yourself. The ILADS Lyme Disease Registry has been in existence awhile. I'll past the link at the bottom.

Also, see Turn The Corner Foundation for further information on what they've been doing via grant money, physician education, Lyme Disease Awareness, etc. It seems that you are trying to pretty much duplicate what's already being done by organizations and professionals who have been vetted and have been far more transparent and "by the book" (legally, fiscally and professionally) in their endeavors.

You say that you've done "tons of research" on this issue. One wonders then how you could possibly be unaware of these two entities ... the ILADS Registry and the Turn The Corner Foundation.

And one final point, you put your name out there, not anyone else. You've shared your identity with many others on YouTube, Twitter, your own Ning.com website, etc. You also sent out advance emails to friends and members from your Ning website announcing the launching of your Registry, indicating that you were the founder. Yet, when you wanted to advertise the Registry for free on Lyme support forums, you elected to be less than honest about yourself and your motivations.

If you're gonna set up a website and an organization, asking people to register personal information about their health that you intend to keep and share with others, and also request monetary donations from them, then people rightly deserve to know your identity and motivations.

I'm not saying anymore on this thread. I think your responses speak volumes.


http://www.ilads.org/lyme_research/lyme_articles12.html

Lyme and Associated Diseases Database Project

by Dr. Burrascano, Turn the Corner Foundation

Articles and Presentations
ILADS Position Papers
ILADS Publications

Dr. Burrascano, in collaboration of the Turn the Corner Foundation, are providing ILADS with the unique opportunity to develop a Lyme and Associated Diseases Registry."! Dr. Burrascano, a member of TTC's Medical Advisory Board, has been compiling data on diagnosis and treatment of Lyme disease. The reports generated will provide invaluable information about Lyme and associated diseases need to for diagnosis and treatment. The data will identify measures that will improve the management of these conditions over time. Results from this critical research will be a key element for all treating physicians and this information will be published and disseminated worldwide. Top-performing doctors in this program include Dr. Chandra Swami, Dr. Steven Harris, Dr. Cheryl Ortel, Dr. Ann Corson, and Dr. Daniel Cameron. Physicians are encouraged to participate in the database program today and help standardize treatment techniques for Lyme patients. If you are a doctor or medical assistant and would like to participate in the program, please contact Colleen Nicholson at Jcn4jc@aol.com or 516.286.7196.

Use the following link for Turn the Corner Foundation http://www.turnthecorner.org/2008Initiatives.htm

LDNRadmin
Posts: 4
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Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by LDNRadmin » Fri 20 Mar 2009 21:31

Eagle, I think you and a few others have more issues than just Lyme disease. I would hope you get the help you need. You don't have to worry about me as I will no longer be posting here or on LymeNet. The word is out on the Registry and people are Registering as we speak.

The tragic death of my brother and stress is what lowered my immune system and brought on my illness as far as I am concerned. I will move forward with my projects and continue to help others. People know how to contact me and I will respectfully reply to those who have good intentions, ideas, etc.

I spent hours and hours putting this site together to help others. I don't need to sit and listen to this non-sense, because that is all that it is.

I wish you well in your recovery and suggest you seek out some counseling for yourself or the like.

Fin24
Posts: 1699
Joined: Sat 8 Mar 2008 20:14

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by Fin24 » Sat 21 Mar 2009 19:02

Eagle and others

I share your concern about this site for the very many reasons you mentioned including
security of info

the appearance of monetary gain agendas ( backing off now that it was pointed out he isnt yet non profit--and that reminds me --HOW exactly can one declare non profit status anyway??? I mean maybe we ALL should at this point?? I mean Cave and I and many do volunteer gobs of time and effort in patient advocacy and frankly itd be nice to collect money so my kid can get his damn IVIG and get well)

the wording that looks a lot like that of Rosner et al when marketing ( making sure its legal,good intentions repeatedly mentioned,complaining about being victimized by those seeking to verify,etc)

the confusion of the few " caught" into this thinking this is "official"

the transparency only when he had no longer the choice to remain opaque ( had been "outed")

I am not supporting this among my groups and networks unless and until we all see these concerns addressed

besides as Eagle pointed out the ILADS already is working on this, as is Dr B so why recreate a wheel that is squeaky and lopsided and my ditch our cart?

LDNRADMIN says
and suggest you seek out some counseling for yourself or the like.
thank you

minitails2
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Joined: Sat 3 Nov 2007 10:27

Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by minitails2 » Thu 3 Mar 2011 10:23

Gary Engleman has started up the Lyme Disease Registry on Facebook. It's under "Gary Engleman." Still bad news.

Camp Other
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Re: NATIONAL LYME DISEASE REGISTRY Site has been Started

Post by Camp Other » Sat 5 Mar 2011 8:15

minitails2 wrote:Gary Engleman has started up the Lyme Disease Registry on Facebook. It's under "Gary Engleman." Still bad news.
I think third party Facebook apps must have sent some sort of malware to people with Lyme disease in their "like" list which automatically generated all those Lyme-related groups and profiles.

Someone will have to provide evidence to prove otherwise... I've already seen too many malware Facebook apps of similar ilk posted on SOPHOS...

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