New National Lyme Disease Registry!

The Mission Statement for the Registry The Lyme Disease National Registry is a non-profit organization interested in raising awareness of the prevalence of Lyme disease in the United States.

The Mission Statement for the Registry

The Lyme Disease National Registry is a non-profit organization interested in raising awareness of the prevalence of Lyme disease in the United States.

By raising awareness of the Prevalence of Lyme disease in the United States, the LDNR seeks the following goals:

To provide data analysis from the registry

which will supersede the current data provided by the CDC.

To have more physicians trained in the recognition of Lyme disease as a clinical diagnosis.

To raise awareness of the IDSA of the existence of chronic Lyme disease.

To bring IDSA and ILADS together to get rid of the current controversy over the Lyme disease diagnosis.

To obtain funding for further research to treat and cure Lyme disease.

To raise awareness in communities to non-physicians of the Lyme

disease epidemic.

To promote education to all physicians (PCP’s, Infectious disease doctors, psychiatrists, etc.) to recognize symptoms of Lyme disease so patients are not misdiagnosed.

About Gary:

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 here:

(Visited 20 times, 1 visits today)
Subscribe to Jenna's Lyme Blog
Yes, I want to subscribe. I understand I will only receive one email each month when there are new posts.
This entry was posted in Lyme Disease News. Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *