This is topic LYME DETAILED BROCHURE SUMMARY & Tincup's jobs; 10-25-06 in forum Activism at LymeNet Flash.

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Posted by bettyg (Member # 6147) on :;f=3;t=015533

My pc is freezing up constantly; tried to edit below to make it look nicer since I copied it from medical; but it freezes up & NO progress; so I'm quitting...Bettyg

Topic: Tincup's list of lyme jobs needing VOLUNTEERS; can you help at all?

Frequent Contributor
Member # 6147
posted 19-07-2006 03:57 PM
This was buried in Dr. Jemsek's NC post, so I decided to start a new post since Tincup outlined all the "activism" jobs that need to be done on a daily basis.

Can any of you help Tincup in ANY WAY?
I only posted part of TC's reply back to it is not complete in entire content.

TC related she had 2 neighborhood boys, 8 and 10, appear on her doorway one day asking her what they could do to help with LYME activiites. She had them work on putting labels on a mass mailing of envelopes! They had so much fun; they want to come back to TC's home again.

Going to break up Tincup's task work for our lyme minds so folks can see what THEY ARE GOOD IN, and can volunteer on specific ideas you mentioned Tincup....

Originally posted by Tincup:

"Where are the activists that need to continue to support their llmd?"

Some folks feel that they don't have time
or energy to help with Lyme activism
and that the old time activists should be..
and will be... doing all the work .

Right now.. in OUR face... we have ongoing:

Federal bills,
state bills,
legal actions/hearings in several states against LLMD's,
insurance problems,
massive duck problems,
letters to write,
plans to organize,
trips to schedule,
news articles to write and edit,
emails to send and respond to,
phone calls both incoming and outgoing,
protests to organize,
conferences to get to,
local Lyme projects,
legal projects,
fund raisers galore,
web sites to update,
organizations to contact,
meetings with officials,
programs to do,
legislators to deal with,
doctors to educate,
health departments to kick,
support group meetings to organize,
new patients requesting help in numbers like we've never seen,
and detailed research, research, research.
Just to name a few.

Many of the "activists" have families to care for... while they try to care for themselves.

Many also have homes to care for,
children to feed and entertain,
doctors appointments,
other family members who are sick,
a full time or part time job,
and a REAL life that keeps passing them by while they have everything on hold in order to help others.

Many of the activists are VERY ill themselves... often much more so than others. They are VERY tired from all of the different things they are doing... and for having done them for years.

They weren't born activists. They became activists.. self taught over the years. They simply cared and tried to help OUR cause because they didn't want to see others go through what they have been through.

They are tired. They could use your help. ANY VOLUNTEERS?

TC, I'll continue doing what I have done, and you know where some of my previous secretary experience has been.

1, emailing and/or calling senators/reps. on LYME related bills in Congress; funding bills galore

2, emailing Iowa governor and/or senators/reps on anything going on with HEALTH issues: lyme, diabetes, heart, Alzheimer's, funding issues, etc.

3, emailing celebrities: STEVEN SPEILBERG about funding for:

a. Dr. Jones' legal funding so he can remain treating LYME CHILDREN;

b. funding to finish the LYME documentary, UNDER OUR SKIN, I think was the name of it.

c. funding for WORLD's 1st CHRONIC LYME RESEARCH CENTER AT COLUMBIA UNIVERSITY, NYC, in the USA....we'll be no. 1 !!!

4, assisting as much as I can here on lymenet;

5, sending my welcome; here are some newbie sites to visit including TREEPATROL'S NEWBIE LINKS, etc.

6, do a lot of PM/home emails to folks helping or giving them guidance when I can;

7, promoting LYME BOOKS IN PUBLIC LIBRARIES; asking them to order this & that. They have ordered 5 for me; only 1 turn down...MOLD WARRIORS! go figure

8, writing editorials to LETTERS TO EDITOR on various LYMe NEWSPAPER articles written;

At the moment, that's what I've been up to I guess!

TC, I loved also how to 2 young boys showed up and did a mass mailing for you! More kids can help with this sort of thing.

When I was involved with the Ames lyme leadership, we have a Senior Center who does VOLUNTEER work.

The seniors put return mailing labels on LDA lyme brochures, etc.

They counted out groups of brochures: 25, 50, 100 ... saved us a LOT OF TIME.

Many became interested in lyme disease because of this.

Thanks for this post and TC's detailed list of ON-GOING projects that need to be done. Bettyg

Betty Gordon,Iowa;former secretary who typed legal agreements.Took 5 yrs to get SSDI disability insurance benefits. Approved 7-1-05; retro 3 yrs on medicare! Misdx 34 yrs. until 6-04!diabetes 2,glyburcide,5-06 ALLERGIC GLUTEN & CASEIN/cow's milk.

Posts: 4446 | From: Ames, Iowa, USA | Registered: Aug 2004 | IP: Logged

Flash Member
Member # 6948
posted 19-07-2006 04:49 PM
I would be more than glad to help in any way I can.I pretty much stay at home with my 2 yr old daughter all day so I have the time.I don't however know what area I could be of use?


Posts: 14 | From: Springfield, Mo. | Registered: Feb 2005 | IP: Logged

Frequent Contributor
Member # 5829
posted 20-07-2006 12:56 AM
Oh what a nice surprise! It's late but I'd thought I'd take a quick stab at responding.

I was at the Farmers Market today.. and then looking at possible treatment center sites.

I went to set up a table at the farmers market... and hand out Lyme info there.

When I got there... I decided I must have Lyme disease.

I packed the brochures.. chairs to sit on, sample ticks, posters, decorations, tweezers, repellants, etc. etc.

But when I got there to set up the table.. after trying to find time for a YEAR to do this project... I forgot the TABLE!!

Oh well.. I set up the chairs and put the literature on them.. and used the brick walkway.. and it was fine. I spoke to 40-50 folks in detail.. and handed out lots of literature.

The Farmers Market gave me a free space in the market since I wasn't "selling" anything.. and they all had Lyme or had family members with it.. so they welcomed the idea and my efforts to help others. Ok... now..

Thanks BettyG for making this a good deal easier for folks. I kinda "went off" about all the things needing done last time I posted (a bit overwhelmed)... yet I failed to provide any direction. Pretty lame of me! Sorry.

May I suggest...

Anyone having time to volunteer.. there are a number of things to do. Perhaps pick from the list above, one or two things you can help with. Then contact..

1. Your local support group... even if far away or in another state. If they have no need for your skill at this time.. they can put you on their list of folks to contact later as projects develop.

Look on the top LEFT of the board here for SUPPORT GROUPS. Click there and pick one near you and contact them to make the offer.

2. Contact the national organizations.. such as the Lyme Disease Asociation. That can be done by calling .. toll free.. 1-888366-6611

Or by emailing... [email protected]

Be sure to tell them what you want to do and are willing to do. DON'T just say "anything". That WILL get you in trouble! HA!

3. If unable to help state or national groups.. make your own project and watch for other projects to be posted on the board.

Does your local library have a good supply of Lyme information?

Have you.. or your family written out your "story"... briefly... so it can be sent out at the last minute when we call for you to help?

Have you written about Lyme in a letter to your local paper lately? Do you have media contacts?

Can you put brochures in your car and take them to places and drop them off.. like at doctors offices, etc.. when you go out for a normal trip to town?

How about the Federal bills? Can you check the post about them and be SURE your state reps are signing on? A quick call or email is often a good start there. Nothing fancy.. just do it.

If you are a good researcher... can you put together info on one topic.. something that interests you... such as the connection between Lyme and MS? Or dogs and Lyme? Or prevention tips? etc. etc. etc. When done.. it can be posted here and at other sites.. dog sites.. chat groups for MS, Parkinsons, fibromyalgia, etc.

Melanie has asked for help with the Lyme Memorial project .

Dr. Jones and Dr. J in NC may need a nice note of encouragement.

Contact your LLMD via nice note and thank them. It IS what keeps them going!!!

There are other projects.. some now.. some will be later. If you see a request for help.. and there is anyway possible to do something.. please do.

Again.. thanks BettyG.

And everyone who helps others. Each one, reach one.
If you get the choice to sit it out or dance...
Dance on over to the Activism Section!
Posts: 2549 | From: The Moon | Registered: Jun 2004 | IP: Logged

Frequent Contributor
Member # 7348
posted 20-07-2006 10:43 AM

originally posted by Tincup:
Can you put brochures in your car and take them to places and drop them off.. like at doctors offices, etc.. when you go out for a normal trip to town?

Ok, here's a perfect example of something else I CAN do. But where do I get brochures? (I'm not trying to be dense, I really don't know.)
Posts: 1120 | From: somewhere other than here | Registered: May 2005 | IP: Logged

Frequent Contributor
Member # 6147
posted 20-07-2006 01:41 PM

Great Question! Tincup showed Pat Smith, the LDA PRESIDENT's email address, send her a note asking for 50 or 100 of their brochures:

Lyme Disease Asociation.
That can be done by calling .. toll free.. 1-888366-6611 Or by [email protected]

1. ABCs of lyme disease;

2. LYME [R] PRIMER, readiness thru recognition, prevention, & education ....

info on co-infections:

lyme disease, babesiosis, ehrlichiosis, bartonella, rocky mountain spotted fever, and tularemia;


HOTLINE: 800-887-LYME; 860-525-2000

There are charges for this brochure:

. Tick-spread diseases; which is a LYME DISEASE RASH; shows examples galore.

discusses: ways to donate; LDF programs & good works; info on ticks, preventing tick bites; removing ticks; reducing ticks on property; reducing mosquitoes; lyme disease; LD diagnosis;

LD clinical diagnosis....general; skin, brain, heart, blood vessels, lungs, eyes, joints, muscles, liver, stomach, intestines, spleen, and pregnancy..

LD testings, ANTIBODY TESTS, false negative/positive; drect detection tets; LD treatment;

TALKS ABOUT ALL CO-INFECTIONS, & about educational materials ... lists them all and the cost to buy each/quantity involved.

Materials include and $$ amounts you pay:

lymelight newsletter;
tick wallet cards;
poster guide to LD;
everything you need to know about LD;
LD what you should know 60 MIN. VIDEO;
LD what you ahould know 30 min. VIDEO;
community education slide show;
what LD is .. prevention poster;
faces of LD 27 min. VIDEO;
LD & pets;
many faces of LD book of stories of patient experiences;

comm. education programs:
the works .. multi-piece display;
comm. ed slide show;

LD facts for kids.. 4-18 min. videos;
LD scientific investigator program, video, etc.
LDwhat you should know 28 min. VIDEO
school distribution program;

WORKPLACE ed programs 28 min.VIDEO

self-help program . 30 min. VIDEO
satellite medican conference; 3 hr. VIDEO;
journal of spirochetal & tickborne diseases;
TB disorder packet
LD scientific packet;
LD chronic packet;
conference compendium;
LD scientific slide show;

lyme disease & related disorders/co-infections

IGENEX DIAGNOSTIC LAB has their blue LD brochure. I also asked for their CURRENT PRICE LIST to go with EACH of their brochures!

hiw lyme is transmitted; if I suspect exposure; what are the symptoms; how is LD diagnosed; can ticks be tested; are there other TB diseass;

what tests are available: ELISA, WESTERN BLOT IGM/IGG, lyme dot blot assay, and PCR, polymerase chain reaction,

what test is best & names all; what is the treatment; can LD be prevented, & how to remove a tick.
797 San Antonia Road
Palo Alto, CA 94303

800.832.3200 toll free;
650.424.1196 FAX

ADDED 7-21-06

Bettyg's recent LYME BROCHURE from LDA and Betty's addition of books, etc., and EDITED by Ann - Ohio. You could forward this to anyone you meet and online to family, friends, etc ... you've got the picture now, right? [Big Grin]

I've had a table set up 3-4 times now, and was ready to write down anyone's EMAIL ADDRESS to send them the most recent info I had vs. something I had printed 100 copies of 3 months ago with some mistakes in it.;f=1;t=045337

I hope this helps you/others who read this! Thanks for asking this important question! Bettyg
Posts: 4446 | From: Ames, Iowa, USA | Registered: Aug 2004 | IP: Logged

Frequent Contributor
Member # 7348
posted 20-07-2006 08:20 PM
Thank you very much, Betty!

Posts: 1120 | From: somewhere other than here | Registered: May 2005 |

[ 25. October 2006, 03:44 AM: Message edited by: bettyg ]
Posted by bettyg (Member # 6147) on :
Added this to my other list of brochures 7-21-06:

Bettyg's recent LYME BROCHURE from LDA and Betty's addition of books, etc., and EDITED by Ann - Ohio. You could forward this to anyone you meet and online to family, friends, etc ... you've got the picture now, right? [Big Grin]

I've had a table set up 3-4 times now, and was ready to write down anyone's EMAIL ADDRESS to send them the most recent info I had vs. something I had printed 100 copies of 3 months ago with some mistakes in it.;f=1;t=045337
Posted by Tincup (Member # 5829) on :

Thanks for sharing the lists. You are a hard worker .. and really keep on top of things around here.

Good for you!

[Big Grin]


You forgot to add something.. actually two things.

1. How many years you've been doing this!

2. How well you make Tincup smile!

[Big Grin]
Posted by bettyg (Member # 6147) on :
up... I revised this since I have typed very DETAILED info on ALL LYME BROCHURES AVAILABLE & WHERE TO GET THEM... Bettyg
Posted by DJP (Member # 5893) on :

I just wanted to let you know that I agree that things have not changed much in 12 years, but I wanted you to know that through the efforts by people like you, TC, betty and many others, people are having a better chance of getting diagnosed and treated.

My children and I were able to get diagnosed and treated without going through the nightmares that many people have gone through because I found this site right away and got good LLMD recommendations.

I live in MA and although it is a highly endemic state most of the Dr's follow the IDSA guidelines. Had I gone to some of the ID docs I would probably still be trying to figure out what was wrong.

I in turn tell everyone I meet about Lyme and usually end up giving them brochures. I worked with the Board of Health in my town and sent out information to the entire town.

In September, I will have a booth at the health fair to pass out information. I've help at least on person get to an LLMD and planted the seed with many others. You can lead them to water, but can't force them to drink.

I bring brochures wherever I go, attend public Lyme discussions to make sure all information is presented not just a one sided story, bring brochures/information to doctor appts....

I have a whole list of other smaller projects to do and I do them when I have the time and my mind.

Yes, it's slow, but we have to keep taking these steps to get there.

I think there are more of us doing what we can when we can and it doesn't always get posted.
Posted by bettyg (Member # 6147) on :
DP, thank you so much for the compliments to me, Cave, Tincup, and many others!

Yes, I totally agree with you that many of you are doing things silently behind the scenes.

I decided to open this thread for "BRAG TIME" for us . So please continue sharing what you have done IN OUR LIMITED capacities due to our chronic lyme & other illnesses.

Tincup asked for help, and has since learned of the many projects others are/have done without any big fanfare.

DP, thank you for what you have been doing as well. [group hug] I too now carry my bag of lyme brochures in my car trunk so they are handy whenever I need to promote lyme or hear of others needing help.
Bettyg [group hug] [kiss]
Posted by bettyg (Member # 6147) on :
someone was just asking what brochures are available; so bringing this up for them to look into my DETAILED list of stuff...

go to the END of the post for detailed lists of many brochures ok! Bettyg [Big Grin]
Posted by bettyg (Member # 6147) on :
up for newbies; details on ALL LYME BROCHURES published by LDA, LFA, etc. Bettyg [Big Grin]
Posted by bettyg (Member # 6147) on :


I spoke with the tick expert folks at the conference, who were from Aberdeen Proving Grounds in Maryland; great people helping our military men and women!

They showed me samples of permanone impregnated clothing. I smelled it to detect odors, which there were none; and it felt it. Looks, smells and feels like the real thing.

You (civilians) can order clothing now; like what the military folks wear to protect themselves, but it is prettier.

It has the tick stuff already in it, so no mess at home doing it yourself. It is for sale at the site below.

Aside from the best protection you can get, it saves money as the cans of spray to treat clothing can run from $6-$8 each and only is good for 2 weeks.

There is NO scent; so it is good for chemical sensitive folks and hunters in the woods.

The site below shows a selection of women's clothing. If you look at the top of the site, you can click on buttons for men's and children's clothing. Christmas is coming.
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