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» LymeNet Flash » Questions and Discussion » Medical Questions » Report back on ILADS guidelines- VERY encouraging

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Author Topic: Report back on ILADS guidelines- VERY encouraging
Tincup
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In the months when the dreaded IDSA guidelines had expired (before they printed the update)... support group leaders in Maryland worked together and did a mass mailing of the ILADS guidelines to doctors across the state... and about 800 sets went out.

They were mailed directly to physicians and hospital administrators in the spring of 2006. We also made up and sent a one page "Fact Sheet" dealing with information directly related to Maryland's situation and facts like testing has been missing so many, etc.... and a short cover letter.

I have checked back with support group leaders a few times since and from what we have noted:

We are seeing fewer patients coming to us in the early stages.. yet the number of cases has dramatically increased. GREAT news!

This year we have many more reported cases on the books and we are neck and neck now with PA for the MOST cases so far this year... and WAY above the other states. That is a first.

Many non-LLMD's are automatically starting treatment without waiting for blood work. Almost NEVER has that happened in the past.. it was almost always the "wait and see" approach to determine if you get a rash or feel sick first.

When blood work is ordered by these non-LLMD's.. most went straight for Western Blots rather than bother with ELISA. (This is VERY VERY unusual.)

The patients coming to us seem more educated and often report "their doctor" told them some of the information.. and it was RIGHT!

Patients are more often than not being given longer courses of antibiotics from the onset. Impressive, especially since we are in the heart of the "one pill is all you need" territory .. IF any treatment was given at all.

Some patients are even being tested for Ehrlichiosis (not a normal thing).. and I checked with the pharmacy and they told me several patients were currently on Mepron for Babesiosis. All these years they had never had a call for Mepron.

After years of working with Lyme patients, I have not seen this big of an improvement happen before.

My conclusion is that reaching the physicians in the field directly.. rather than waiting for the health department to get off their duff and do something... MAY be the reason we see this sudden turn around?

Dealing with the health dept over the past 20 years has been worse than a total nightmare.. so most of us in the state finally decided to quit beating our head on the brick wall and began working AROUND them.

Of course I am NOT discounting the hard work being done by other patients and support groups in the area... but even when we factor that in.. this last year has still shown an improvement in the situation here.

I share this now with you because I feel it has been a successful way to get the word out to doctors and would hope maybe others could do the same in their states.

Many of the doctors probably never heard of the ILADS guidelines.. and certainly weren't actively looking for them... so having them mailed with an official letter and a list of problems that were occuring in the state seems to have made a difference.

To give you an idea of how it was done with NO budget:

We got permission to make copies and a support group member had them done through a donation from their work place.

We got a kind donation from the LDA to cover other costs including postage, envelopes, printing ink, etc.

We all pitched in and worked together to write up fact sheets, compose letters and print them, stuff envelopes, research the lowest costs for postage, envelopes, etc...

I believe the cost to do this, excluding the printing donation by a member, averaged about $1.00 to $1.10 per packet.

We focused on physicians in the medical fields most likely to see new patients. We did not send them to plastic surgeons, all dentists, and other doctors who wouldn't normally be front line physicians in this case.

We also saved our money and didn't send them to ID doctors... as we are deep in an IDSA territory and through the word getting out to patients over the years... pretty much everyone here knows better than to go to ID doctors for Lyme.

Soooooooooooooo... I think working together and reaching doctors directly has made a positive difference.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Kayda
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Tincup,

This is wonderful news! I just tried to email you, but when I clicked on your name the window didn't allow it.

Could you email me?

Thanks,
Kayda

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trueblue
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Well done... TC and all the Marylanders! That is great news!

 -

[ 06. May 2007, 09:20 PM: Message edited by: trueblue ]

--------------------
more light, more love
more truth and more innovation

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mojo
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Wow! This is fabulous. Great job.

I'd love to see this happen in my state (you know, one of the states where "there is no Lyme" or "is extremely rare".)
Congratulations

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MariaA
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That is absolutely outstanding work, both on the way you did it, and in the way you tracked the results.

Have you considered sharing the documents that you wrote with activists in other states who could adopt them for a similar push?

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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Beverly
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WTG!!!!!! [Big Grin] Thank you so much Tincup and all the people in Maryland that worked so hard, you are all great!!!!

[group hug]

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sizzled
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Well done!!! [Big Grin]
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CaliforniaLyme
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GREAT WORK*!)!*)!!!!!!!!!!!

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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djf2005
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tincup-

what a great service you have done for your state.

would you be willing to consider letting other states try to do the same thing with your material.

i am still chronic at this point but if i had the info you sent out (your letter, guidelines, etc) i could sent to some local pa doctors?

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

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sometimesdilly
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That's really terrific news, TinCup!

kudos from a fellow Marylander, Dilly

Posts: 2505 | From lost in the maze | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
humanbeing
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I officially volunteer to lead the same charge in CT. Don't really know where to start but ready to start somewhere...

I recently mailed 350 invitations to Primary Care Physicians in the New Haven area to attend the Lyme conference May 19th at Univ. of New Haven : http://www.newhaven.edu/unh/Lyme/

I was so convinced that with the great lineup of speakers and topics (blumenthal, fallon, burroscanno etc..) I would get at least a few...

Well--as of last week there are only 52 people registered and my friends and family make up 6 of those...no docs at all...

They are so deep in denial or just completely unaware of the importance of Lyme in CT...I could scream (but my jaw hurts)

So Tinny...please give me some pointers on how to get started and if anyone else in CT wants to join me---please do---I tire easily.

Hugs and great great work!!!
Kim

--------------------
We are spiritual beings on a human journey...

www.ruggierogallery.com

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sometimesdilly
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Kim-

are you saying that only 52 people from your appeal reponded and are going, or that only 52 people altogether are registered(!!!!)?

dilly

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pippifern
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Tincup,

Magnificent work!!

Nan informed us recently that the Massachusetts legislature just voted unanimously to set up and fund a Lyme Disease Commission. I know that state commissions usually have to be 'neutral' in their positions, but that means they can provide 'balanced' information on all sides of an issue. I know this because I work for another Massachusetts state commission.

Your process looks like a really good one to follow.

Thanks for sharing all your information with us.

pippifern

--------------------
To our good health,
Pippifern

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5dana8
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Awesome work [woohoo] Maryland!!!!!!!!

--------------------
5dana8

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imanurse
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Hi Tinny,

I am so glad to hear you are having a positive outcome!

I remember when you posted the letter here, and thought I saved the link, but cannot find it. I also cannot find it in a search. I will send you an email.

Keep up the good work. [Big Grin]

--------------------
**Eat Chocolate**

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docjen
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THANK YOU! From a grateful resident of the State of Maryland.
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Tincup
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Such nice replies!!! Thanks. But do know it was a COMBINED effort of several people from several groups that did this project.

When this was in the works I was out of state and the letter and fact sheet were dictated by me to another person.

Sooooooooo..

I don't have a computer copy to post or email .. BUT.. I will check to see if someone does and if they may be able to FAX a copy to those interested to use as a sample.

I am so glad others might do this. After years of beating our heads against the wall... this seemed to be a project that got results.

Also.. VERY important. VERY IMPORTANT!!!

I used the BORING and mundane "official approach" when we did this. The more "borning" the better. We wanted it to look doctor-borning.. not fun and frills.

We did NOT include our groups info.. handouts, etc. It was VERY professional and plain.

We also didn't have the people contact us for questions. We referred them to ILADS web site and the LDA toll free telephone number if they had questions.

If you want to do this to promote your group.. I would suggest you'd be wasting your money and your effort. They will toss it out in a heartbeat.

So you need to know that it is NOT a promotional thing for your groups.. it is strickly an educational tool. The more boring the better.

Ok.. let me check and I will get back to you.

Thanks again for considering this project. After MANY attempts we found this seemed to "cut through" and actually reach someone.

It put permission right in their hands to use their own judgement.. and gave them back-up documentation.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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humanbeing
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52 Registered total... not from my efforts (except my sister/hubby and friends)I am hopeful there may be a few last minute folks...

Tin - please fax or email me your letter to docs and anything else that I can use...
fax# 203-245-4417
email: [email protected]

Thanks, I will get started right away!!!

--------------------
We are spiritual beings on a human journey...

www.ruggierogallery.com

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Ann in CA
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Thanks Tincup,

Pretty impressive work!

Ann

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stymielymie
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great news

now we only have 49 states and 50 or so countries to worry about.

how about a nice big ad campaign next super bowl
lol

keep up the impressive work.
we need a sponsor that can benefit our cause
and help us.

how about ortho or bayer garden division
getting us some ads on tv about lyme.

docdave [woohoo]

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Vanilla
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Thanks Tincup and what a fantastic idea to do this.

I would love to mail some out in CA especially to all the doctors who ignored my symptoms for 16 years while I tried to get diagnosed and who ordered elisa tests and could not read the results.

My fax died. Could we mail you or someone a stamped self address envelope for a copy of the letter you sent out?

I would love to mail one to the Vector Control office here where they have their head in the ground and one of the workers there even has LD.

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breathwork
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Thanks Tincup...for my friends who live in your beautiful state!

Carol Ann

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Lymied
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Thanks TinCup for all your hardwork and thanks to those who worked along side you! [bow] You are making me proud of my home state of Maryland! [woohoo]

--------------------
Pride is concerned with who is right. Humility is concerned with what is right. - Ezre Taft Benson

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ldfighter
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This is AMAZING work Tincup! And kudos to you humanbeing, even if your efforts didn't seem to bear fruit right away.

For sending ILADS guidelines and invites to the UNH conference, maybe a good set of doctors to target would be CFS/fibro docs:

http://www.co-cure.org/Good-Doc.htm

I'm going to send some.

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lightfoot
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Wow! Thanks to you and hurrah for teamwork!!!!!

Thanks for sharing.....it's uplifting and encouragaing.

Healing smiles.....lightfoot [Smile] [Smile] [Smile]

--------------------
Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

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Tincup
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I am kinda wrapped up in things right now.. but if you want a copy of the letter and fact sheet.. the TX group sent one to me by email.. that one of our group leaders sent to them... so I can and will now share it if you'd like to take a look-see. Sorry.. I don't fax.. but someday maybe?

And Thanks TX!!! It helped a lot! Good work!!!

To get a copy.. please email me at:

[email protected]

PLEASE put in the title you want a copy of the letter and fact sheet. I have too many emails coming in.. about other stuff.. and don't want to miss you!!!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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