Topic: Making life easier for volunteers & patients
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You all amaze me. Truly amaze me. Hugs to all who spend time here doing this work. You have reserved a spot in heaven for yourself and your family.
Think about this... years ago there were only a handful of people doing this job here or anywhere. It was hard, but not as hard as today. Of course, not many knew about Lyme, and we only had about a half of a dozen doctors in the beginning, so it wasn't as extensive.
Knowing even the CDC admits there are 600,000 new cases of Lyme a year in the USA alone, with so many people looking for doctors and so many working their fingers to the bones trying to help them, after thirty years of this I said "enough".
For several years, kick me, kick me for not doing it.... I have been trying to put together a master list of doctors who treat Lyme & co's that is updated, easy to read and has the basics.
I even reserved a website domain name for the site, just haven't had time to do it. Now, I am finally getting it done.
Don't know about everyone, but I get requests for doctors, NP's, Chiropractors, labs, etc. (use to be 30 to 40 a day easily) and many are coming from foreign countries as well as all across the USA.
Anyhow, Dr. J is not open yet- I need to do an update on that- so more and more requests are coming in from desperate parents.
ALL states, all doctors at this time are needed.
I will first check each one you share along with info you provide for accuracy, then add them one at a time to this master list. ONLY though, if I can find them online through a website of theirs, being expert speakers at conferences, articles in the press, ILADS membership, wrote a book, etc. etc.
In other words, if they are already out there in public, where anyone who does a simple Google search to find them can, then they can be on the list.
EDIT- Adding my email address here that I forgot to do when I wrote this...
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
What is needed...
An email to me with the title stating the name of the State and LLMD. Example- Arizona LLMD.
It took me all day, ALL day, to translate one list of about 12 names to the site and check all details for accuracy.
I have name, type of doctor or provider, if Morgellons or Autism literate etc, then the town, state and phone number. Each name is linked to a website or other spot where they can already be found on the internet as a Lyme treating expert or provider.
I now have LLMD's listed for a few states and a number of them treat children, so we are making progress.
If you would be so kind as to share your States list, I would be grateful.
Once I get it presentable, even though more will need to be added, I will give you all the link to it to use as you see fit.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
One more thing... making this site nice is the Google search on it. You can type in pediatrician or chiropractor (for example) and find all of them without having to go state to state.
I also need lab info if anyone has a list. I have 10 or so already, but want to be sure we get them all.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I want any lists anyone has. Please!
I am researching them, updating and then confirming all info, being sure they are or are not "out there" before they are used, and will send the list back to you with updates if you want.
I just can't remember all the names of all the docs from all the states off the top of my head.
posted
Might an issue be how well known a doctor is? I can see the well-known ones already being known and ok, but maybe the not well-known ones are leery of being more known about?
Next issue, which I discussed with you - lists might be a lot bigger than the few that are well-known, so that those of us with the full lists have more to look at and evaluate with people wanting referrals.
Maybe it might be better to just keep sending people to Lymenet for the PMs from those with the full lists?
I evaluate and help match for location, payment issues and type of treatment wanted and the list is a lot bigger than the well-known ones.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Hi TC, Could you fix it so people could send you a private message here, or put up a way to contact you from TreatTheBite, please? Ann
-------------------- Ann-OH Posts: 1590 | From Ohio | Registered: Aug 2014
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ann Oh- saw your email, will respond probably tomorrow- long day out doing lots of stuff. And thank you!!!
PS- I'm sorry to say- HA!- still too dumb to figure out how to do PM's and keep up with them, so I am glad you found me! xxxxxxxxxxxx
My post was edited by a moderator, leaving it saying not what I said at all, but what they wanted it to say. I have just deleted their words and what was left of mine because the post is in my name.
posted
I have a LLMD list shared from Ldo to me since I am support group leader. However it says that it is not to be shared in group in order to protect the doctors. I personally love your idea but I am concerned for our doctors and don't want to create problems for any one. Thank you for your efforts
Posts: 75 | From San Diego, CA | Registered: Feb 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
mari- yes, thank you for responding. I could have gotten that list, just didn't want to bother LJ and PM since so many here already have it. Plus I am getting names from the docs themselves who want to be on there.
Just thought this would make a good central place to work from, easier and faster for me.
I am currently working on CA and have at least 150 names so far just from basic internet searches, so I probably got most of the ones from your State by now, but I do thank you very much for explaining.
However, if you have any names in Alaska that would sure help! Not sure they even have doctors up there at all! HA!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The names are getting ahead of me now as this work is very slow and tedious, and my eyes aren't happy these days.
And thanks to those who have sent lists and my research, we have lists for Maryland, Virginia, DC, Alaska, Georgia, California, Connecticut, New York, Alabama, Colorado, North Carolina and maybe a few more.
I have names for some, but probably not all providers in Illinois, Montana, Nebraska, Oregon, Pennsylvania, South Carolina, Washington, Wisconsin and a few more.
If you have names for any of the other states or even ones mentioned above it would be appreciated if you shared.
And thanks very much to those who have shared the lists!!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am also listing any advocates or support groups who would like to assist people who are looking for doctors. I have a large list of support groups from across the county, but certainly not all of them.
If you would like to be a contact person/group for your state I just need a name to post publicly... like your group name, or your first name along with your town/state, and an email address where they can contact you. If you have a website please send that link along and I can add it to the list also.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks very much to those who sent names for Minnesota, Iowa, Pennsylvania, Florida, Tennessee, New Hampshire, Texas, New York, Utah, Alaska, Arkansas, Georgia, Michigan, Kentucky, Virginia, Oregon and Vermont.
States that still need more names if available- Arizona, Mississippi, New Jersey, Rhode Island and South Carolina.
Still have a lot of searching, verifying and entering to do, but it is coming along!
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/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic