Hi All! Thanks for inviting me to your group. First of all I want to
apologize for the screen name, it was from way back when we though that
kind of stuff was funning in middle school. My name is Leah and I am 19
years old. I am going to college to be an Electroneurodiagnostic Tech
and I was diagnosed with Lyme Disease in July 08'. I was unknowingly
bit by a tick at Eastern Ave Disc Golf course in June. At first I
thought it was a mosquito bite, but it grew and grew and turned into
the "bullseye" rash. The doctors diagnosed me with Lyme and started me
on my antibodic. I haven't had the stiffness or felt bad in awhile, but
I still do have a mark where the tick bit me. I am going back into the
doctor soon to make sure everything is clear. In the past 5 years I
have gone through cervical cancer and now lyme disease. My motto is to
apperiate life and everything it has to offer. Never let the disease
control you, you control the disease. I look forward to chatting with
everyone on here and get support from others as well as give support.
Have a wonderful day!

Heads up on a big project underway.

ABC Newscaster Brooke Landau's story will be featured on an upcoming
episode of 'Mystery ER' on the Discovery Health Channel. They came to
San Diego and shot Brooke's interview at the television studio where
she works.  This should be a well-done and comprehensive story -
benefiting all Lyme victims - considering the amount of time and
resources they've put into this. It will be a one-hour program, re-
enactment style. They've cast and hired an actress from 'The Bold and
the Beautiful' to play Brooke, as well as various other actors to
play her doctors and family. The theme of this program ('Mystery ER')
is to detail strange and unexplained medical stories from onset to
ER, including all of the confusion, misdiagnosis, and unusual
symptoms.


Details:

Program: 'Mystery ER'
Airdate: Aug. 25, 2008
Time: 8pm (EST & PST)
Channel: Discovery Health Channel (not to be confused with Discovery
Channel, they're separate stations)

Hi, If you are looking for a way to keep track of new Lyme information
check out Robyn's List.  She sends daily Lyme news items diredtly to
your inbox, free. Here is where to sign up:

http://health.groups.yahoo.com/group/Robynns_Lyme_List/

Greetings: I must apologize for the lack of information coming from me.
I have had a Lyme relapse this summer and it has been difficult to keep
ahead of family, my health, and Lyme issues.

I continue to receive inquiries from Lyme patients asking for medical
help. If you have good information on a doctor or other medical
professional in the Midwest who is knowledgeable or wants to learn more
about Lyme, please let me know. But first, check with them to be
certain they would allow their name to be on a list that is sent to
Lyme patients. Then send me their contact information, professional
title, and their Lyme expertise, etc. I have been compiling a list of
those treating Lyme in the Midwest, but I know there are new names. The
information you provide may help many others. Thanks, Kathy

--- In iowalymedisease@yahoogroups.com, "twsharpe@..." <twsharpe@...>
wrote:
>
> Can anyone recommend a doctor in the Cedar Rapids, Iowa area or
maybe a 1 or 2 hour vicinity who will, if not treat Lyme disease, at
least order labs/some specific testing?
>
>   I have positive western blot IGM results from IGENEX, but most
doctors don't seem to trust that lab.
>   I've been sick for 7 mos and am trying to find a mainstream lab
that does PCR testing, or something very sensitive.
>   I got the list from the Cuddebacks, (thank you so much!) but
there's so much controversy with this disease, that I don't know which
labs are "respected" by the CDC mainstream medical community and which
are considered unreliable.  Frankly, I would trust IGENEX, but I'm not
the one writing prescriptions.
>
>   Just got an ELISA at University of Iowa which was negative-- and
am really confused by that, since I had a tick bite, bullseye rash,
and positive ELISA back in February from a mainstream lab (LabCorps)
while in California.   Anyone know how that could be, or what to say
to a doctor who tells you there's no way you have Lyme because your
current ELISA is negative?
>
>   Help!
>
>   Tom
>
>   p.s.  if you want to email me directly, I'm at twsharpe@...  I
would love to hear any of your personal stories about Lyme and what
you've gone through.
>
>  Hi Tom and Group, The website below has excellent information about
Lyme testing. The Central Florida Research Lab has a newer Lyme test
that looks interesting. Here are
the websites:
>    http://www.lymesite.com/reliable_testing.htm
http://centralfloridaresearch.com/lab/content/view/6/1/

More to come,  Kathy

>
>
>
> ---------------------------------
> Building a website is a piece of cake.
> Yahoo! Small Business gives you all the tools to get online.
>

Hello Midwest Lyme Friends,
Here is news regarding Dr. Crist's case with the Missouri Board of
health, which will not make a decision for a few weeks. A report was
posted at www.Lymenet.org on July 16 that said, "Dr. C. wants everyone
to know that his hearing went well. He and his attorney are very
hopeful and believe things will go in their favor. He wanted everyone
to know he is thankful for all the prayers and cards that were sent his
way. God bless all of you." Let's continue to hope and pray thie
diecision will be in his favor. I what Lyme literate doctor who will be
next? Anyone want to post a topic? Kathy

Hello Midwest Lyme Friends,
Here is news regarding Dr. Crist's case with the Missouri Board of
health, which will not make a decision for a few weeks.  A report was
posted at www.Lymenet.org on July 16 that said, "Dr. C. wants everyone
to know that his hearing went well.  He and his attorney are very
hopeful and believe things will go in their favor.  He wanted everyone
to know he is thankful for all the prayers and cards that were sent his
way.  God bless all of you."  Let's continue to hope and pray thie
diecision will be in his favor. I what Lyme literate doctor who will be
next? Anyone want to post a topic? Kathy

Hi, Betty Gordon is setting up a Lyme display June 1 at the Ames
Library and is still looking for photos and stories from Iowa Ld
patients. Please send her a photo and a 200 word story on how you
acquired Lyme, how you were diagnosed, how it has affected your life,
cost, treating docotor, etc. She needs this by May 30! Email her:
bettygordon3_24@...

Thanks, Kathy

--- In iowalymedisease@yahoogroups.com, "iowalymedisease"
<iowalymedisease@...> wrote:
>
> Dear Ms. Cuddeback,
>
> My name is Kristen Martinez and I am the Secretary and Executive
> Board Member of the L.I.A. Foundation which is conducting research on
> the connection between Borrelia and other Infections and Autism.
>
> We are having a conference this year, June 23-24 in Irvine,
> California. We would like to invite you and your support group
> attendees and other interested parties to this conference. We would
> really appreciate it if you could forward the information below to
> your e-mail list. Also, if you are interested, we would like to mail
> some brochures about the conference to you to be passed out at your
> support group meetings prior to the conference. Please respond back
> to this e-mail with your support group address and we will mail some
> out to you right away. If you have any other questions please feel
> free to e-mail me here or call me at 817-545-9194.
>
> Thank you very much,
>
> Kristen Martinez
> Secretary, Executive Board Member
> L.I.A. Foundation
>
Hi Kristen,

Sounds like a wonderful conference. Our address is Iowa Lyme Disease
Association, P.O. Box 221, Brighton, IA  52540.

I have had Lyme for 31 years, our middle daughter is congenital Lyme,
born with a small brain, severe and profoundly handicapped. I am with
you! Kathy

Dear Ms. Cuddeback,

My name is Kristen Martinez and I am the Secretary and Executive
Board Member of the L.I.A. Foundation which is conducting research on
the connection between Borrelia and other Infections and Autism.

We are having a conference  this year, June 23-24 in Irvine,
California.  We would like to invite you and your support group
attendees and other interested parties to this conference.  We would
really appreciate it if you could forward the information below to
your e-mail list.  Also, if you are interested, we would like to mail
some brochures about the conference to you to be passed out at your
support group meetings prior to the conference.  Please respond back
to this e-mail with your support group address and we will mail some
out to you right away. If you have any other questions please feel
free to e-mail me here or call me at 817-545-9194.

Thank you very much,

Kristen Martinez
Secretary, Executive Board Member
L.I.A.  Foundation

Hi Folks,

The Forest Lake, MN {& WI.} Lyme Group is holding a "Walk" to bring
lyme awareness to that Mayo Clinic dominated state. Their walking for
those "who cannot". All their requesting is folks send an e-mail with
their "First Name, Last Initial, and county of residence."

E-mail to Marina at:  inluckfarm@...
E-Mail to Joan at:   jhaehne1@...

Names will be placed on a round piece of paper that the "Walk"
participant will wear. When the media asks what the name's are for,
they can respond........."we're walking for those who can't." It's a
great avenue to get our stories out.

They have over 100 participants in the walk and have received a $500
donation from a local bank to help sponsor the walk.  Many of these
participants are very ill themselves.

Right now, they have more "active" participants than "paper"
participants ! This needs to change !

I'll be providing an entire list of my extended family's FIRST
NAME'S, LAST INITIAL AND COUNTY OF RESIDENCE. Hopefully, the FBI is
not privy to this information ! LOL

Please take a minute to e-mail the ladies your family's info as well.
It only takes a minute. Please forward this on to your e-mail buddies
as well.
Marina: inluckfarm@...
Joan: jhaehne1@...

"They walk for those who can't." -Mike




DISCLAIMER:  The information presented above is for informational
purposes only.

Good Day! I found a tick crawling across my computer screen the other day and I have started my pet collection jar of ticks in alcohol, so yep, spring is here. My plate is very full thanks to farm living, kids and two businesses, but I want to save time to chat with Lyme friends and actively support Lyme education and awareness.

Just a few news items: The support groups of Missouri are planning a Lyme and Other Tickborne Diseases Awareness Rally on Tuesday, May 1, 11:30 - 1 PM on the front lawn of the Capitol in Jefferson City, MO.  If you can attend, contact Kathy White at kswhite@.... Hmmm, could we do this in Iowa?

Another bit of news -  Kent sent this to me regarding Bryan Rosner's books on Lyme and Treatment, especially Rife machines. Because of Kent's special relationship with Bryan, anyone who orders any product from the websites below gets free shipping. Use this code when placing an order, code tnek223 .

www.LymeBookStore.com

The Lyme Disease Book
http://www.lymebook.com
Up-to-the-minute Lyme Disease news headlines
http://www.lymebook.com/lymenews

 

Okay that is enough Lyme news for now. Please takea moment to join this group and start a topic or two. I know it's hard to travel to support groups, and the price of gas is so prohibiting, too. If you have a question or something is on your mind, this is a good place to connect with other Iowans or neighbors in other states. Personally, I now have vision problems and cannot drive out of my area, so the computer is my support. Today is another painful day (spinal pain ), who is your day going? Peace, Kathy Cuddeback

President, ILDA www.iowalymedisease.com

Hi everyone, did you hear about the new Lyme documentary being
developed? A filmmaker in North Carolina decided to tell the Lyme
story after a good friend was ill with a mysterious sickness that
doctors failed to diagnose.  The entire interview with filmaker,
Andy Abrams Wilson can be found here.

http://www.lyme-disease-research-
database.com/Lyme_disease_documentary.html

For more information about the film, check this out -

Under Our Skin: The Untold Story of Lyme Disease
http://www.openeyepictures.com/underourskin/index.html

I know we have discussed asking the University of Iowa, Visual
Arts/Media etc., department if someone would do a Lyme story. Any
one have connections or suggestions?

(I had computer problems and got very busy with my flower business
this summer, so sorry for the inactivity. Join in the discussion and
invite others to join. Got a question or comment? Let's get this
chat group active!)

Kathy Cuddeback

I am in Santa Cruz, Calif and have learned from people
with lyme all over the world. Good to see another
support group.
    Blessings to this site. Joyce

__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Hi, I started this group so Iowans with Lyme will have an oportunity
to chat without leaving home. So please share this group address with
other Lyme patients, family members, etc.  And they do not have to
live in Iowa. I will try to post/reply at least once a day. Have a
good one.
"Live each day to the fullest"