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08/29/2011 05:06 PM

Lyme is LOCAL! 30 people infected an hour!

Posts: 1877
Senior Member

I honestly fell off the couch! When I saw this news flick.

This Doctor who is speaking...needs to brush up on some facts he missed.

He probably just forgot to mention the co-infections.....

BUT...big BUT...was glad he did provide some things...and said enough to make it understood...this is a disease where ALL(doctors,patients, and to be victims) MUST BE AWARE and BEWARE.......

I'll take it for what it's worth.....

Thank you YNN news for giving a little segment....hope to see this much much much more!

my best regards to all

wlk--Cool lyme-disease/

Healthy Living: Lyme disease

08/28/2011 05:00 AM

By: Marcie Fraser

Lyme disease can be a major public health concern. Health reporter Marcie Fraser explains the potential problems.

Lyme disease can be debilitating on the joints, and some reports indicate that thirty people an hour are infected. This is a major public health concern.

“There is no disease where there is more controversy with literature and doctor meetings and certain a wider awareness of public of a illness,” said Dr. Lee Shapiro, a rheumatologist.

Dr. Lee Shapiro says historically, when a patient comes in with joint pain, most often they thought it to be arthritis.

"Early arthritis can be an early manifestation of Lyme disease but also a late one, so if someone comes in with a swollen knee now, twenty-five years ago we would think about Lyme as a possibility maybe injury, gout or arthritis.

But now Lyme disease is way up there on the list that we have to think about,” said Dr. Shapiro.

In most cases, when caught early, a month or two on oral antibiotics is all that is needed. But for others who have had the disease a while...

"Someone who walks in with a process that's been not diagnosed quickly where they tend to need more progressive or prolonged therapy and might need an IV anti-biotic therapy for a month or possibly two months," said Dr. Shapiro.

The disease is often called the “Great Imitator." It can have any symptom for any disease.

It's often confused with ALS, MS even arthritis just to name a few. Because half of the people never find a tick and don't have the so called “bullseye” rash, diagnosis is often delayed allowing the disease time to spread.

In rare cases, Lyme disease symptoms are long term and persistent, especially when the disease has affected the central nervous system.

"Just as with rheumatoid arthritis, there are some individuals with certain genetic background who have more severe disabling with drug resistant disease. There are some people, probably related to genetic background in part, who are more apt to get more severe persistent Lyme disease,” said Dr. Shapiro.

Copyright © 2003-2011 TWEAN News Channel of Syracuse L.L.C d.b.a. YNN. All Rights Reserved.

added the article doug found, bettyg, group leader/activist

Post edited by: Bettyg, at: 08/31/2011 01:27 AM


08/30/2011 05:50 PM
Posts: 1877
Senior Member

Well, I think my persistance is paying off!! I've been hittin' my local gov't officials hard. I also did so for PA...

by the way was the day! how did PA make out!!!???

Neska was awesome...that we could write even though we where out of state.....

Hey......we gotta kick theirs and keep pushin'...

Here is a link my senator...Schumer...he's on the right track!

Crap...even mentioned a Co-infection to LYME!!! bite me!'s not over.....John Patrick...I need you to tell me exactly how this PA battle went.....if it passed and went through...I want to

ADD this to the Senator's plate.....NY should do this TOO!!!!!

As I fight the toughest symptoms tonight...I will sleep well...we just gotta keep at it....push push havin' a babyWink Tongue

Here is the link........It's a begingin'....It's a start...... 12Aug11.html

Hey all....keep at it! Hell, I am on a role now...I'm gonna write one letter a week...instead of one a month.....sooner or gets past the "front desk"

push push push.......wlk--Cool

08/30/2011 06:00 PM
Posts: 669

Im going to watch them now


08/30/2011 06:08 PM
Posts: 2296
Senior Member

this is fantastic news wlkthelne!!!!!

chuck schumer has lyme disease. new york has already passed their cdc guidelines for the new york state.

now TO GO FEDERAL!!!!!!! OH my prayers have been answered.....

ohhhhhhhh WLKTELNE this is the best news ever....this means...ALL STATES!!!!!!!


need to prepare our experiences for when it hits everyone!!!!! this is the best news yet!!!

i am excited can't you tell!!!!!!!!

08/30/2011 06:09 PM
Posts: 2296
Senior Member


08/30/2011 06:14 PM
Posts: 2296
Senior Member

THANK YOU wlkthllne

I've been hittin' my local gov't officials hard. I also did so for PA...

again T H A N K Y O U !!!!!!!

08/30/2011 09:50 PM
Posts: 397

Hi Neska and Doug

As You know I got hit hard By Irene and was without power and running water for the last 3 days and was not able to go to harrisburg today, We were dealing with a mess here

I just got power back tonight, Thanks for the effort you guys made, I will post the recent email I received from the Vice chairman of the York Pa Lyme disease support Group,,

I will Call her tommorow and find out more

Here is her Email

Hi Everyone,

The officers and board members of the York Lyme Disease Support Group would like to thank all of you for your attendance at the hearing today, as well as the letters and phone calls that you made on behalf of House Bill # 272.

You might not think that your efforts were necessary, but they were.

The more "noise" we make on this, the better chance we have of getting something done to help all of us and those who have not yet been diagnosed with Lyme disease.

I just learned yesterday that Seth Grove who is our House Rep for the area where I live is the cosponsor of this House Bill.

You can count on our support group to be on his door step in the near future to support his efforts in getting this bill passed.

On behalf of all of us I sincerely thank you for all your efforts in helping with this endeavor.


Vice Chairman

York Lyme Disease Support Group

I took her Name out to protect her Privacy

Neska Doug and Betty

Thanks for all your support, It is people like you that are making a difference for everyone that is suffering with Lyme disease and the many Victims of the Idsa Guidelines and broken Medical community

Change is needed as we all know, I can not tell you how many people I talked to in the last month that were all tested for Lyme disease with negative blood tests yet they all have Multiple symptoms all pointing to lyme disease

It is heart breaking to see people suffer with this disease and not even know they have it because of the poor quality of the testing for this disease

Most people have never heard of a coinfection,

Awareness is needed In both the Medical community and the Public,

Bills like this could change things in the right direction

I am looking for ways to get into schools and print educational flyers and hand them out in my community, I have also called my local senator and state represenative, Getting involved with local support groups is a great way to make contacts that could open many doors in the future

Lyme net has a support group Listing of support groups from each state, with contact phone numbers, It is a great way to meet people in your local Lyme community, I have met some awesome people and heard a lot of their Lyme disease journeys,

Thanks again,


broke up the solid email for easier reading for us neuro lyme folks, bettyg, group leader

Post edited by: Bettyg, at: 08/31/2011 01:14 AM

08/31/2011 01:10 AM
Posts: 33642
VIP Member
I'm an Advocate

PA Public Hearing Lyme Bill HR272 Recap

from our own LYMEAWARE member, written below!!!

Today in Pennsylvania, there was a hearing by the Human Services Committee of the PA House of Representatives on HB 272, The Lyme and Related Tick-Borne Disease Education, Prevention and Treatment Act.

Although I was not able to watch the beginning of the proceedings what I did hear was very compelling and thought-provoking.

“House Bill 272 directs the Department of Health to establish a task force to address the issues surrounding Lyme disease.

This task force will make and implement recommendations regarding the gaps in education, prevention and surveillance of Lyme and other tick borne diseases in Pennsylvania.

The bill will also ensure that Physicians can apply the two different standards of care that exist today for the diagnosis and treatment of Lyme disease.

Insurance companies have “cherry picked” which standards of care they will approve – effectively “practicing medicine” instead of doctors.

With this bill, physicians will be able to apply longer-term therapies to treat Lyme disease that does not respond to shorter courses.

Research has long demonstrated persistence of these infections which are related to syphilis.

Lastly the bill ensures that insurance companies will pay for the treatment the physician prescribes, putting medical decisions back in the hands of physicians and patients where they should be made.”

Josie's mother's plea to be able to have the choice and option to give her daughter the necessary care was very emotional for me. A parents' worst nightmare where she cannot offer her children the best care possible because her hands are tied. She is left to work within the system and receive inadequate care.

In summary, parents need options, they need them now; please help the parents of sick children with a choice to be able to treat their children with what they feel is best.

There was a doctor that had travelled from New York to testify in support of this legislation. He, himself, had the same experience as many others.

He had the means as a doctor to see doctors in all types of specialties and travel around the world and was dismissed when Lyme Disease was presented.

He finally received his diagnosis and the adequate care and is much better after long-term antibiotics with lingering symptoms.

“The abandonment and rejection by the medical community”… ultimately, “contributed to my chronic medical condition.”

What is at stake is for the best interests of the public. “Ignoring the problem will not make it go away.”

Another said, “I have lost many things because of Lyme Disease” and I am here so that others do not.

Of course, there was opposing comments made by representatives of the Insurance Federation of Pennsylvania, Blue Cross Blue Shield, and a member of the IDSA.

One insurance representative said he had Lyme Disease with classic symptoms and bulls-eye rash and he knows how serious it can become. However, as I watched and listened I felt that he truly did not understand how brutal it can become; my gut and his body gestures, made me feel he was part of the large majority that the standard treatment did work and was enough and he just could not understand what others are or have gone through.

The IDSA member stated that HB 272 “will be harmful to those with the disease.” “Post Lyme Syndrome” has long term effects like congestive heart failure, and other similar conditions. [b]No one was suggesting that “it is in their head” and so forth.

And that there is no “evidence-based protocol” that supports long-term antibiotics or shows that it works; it only gave the patients side effects.

“The CDC, NIH and IDSA” do not recommend long term antibiotics; I don't think that long term antibiotics work.

Bottom line, there should be a task force and the panel should include members from the members of ILADS, IDSA, and the Pennsylvania Medical Society. [/b]

“We would like to ensure treatment according to evidence-based medicine.” There are clear studies that it doesn't work and it isn't up to the legislature to mandate medical treatment.

The hearing ended with a few closing remarks and concerns from those involved with the hearing:

A concern, the system is broke and this doesn't approach the issues to give physicians the capability to diagnosed and treat their patients adequately.

Representative Scavello -The show had more calls covering Lyme Disease than any other show they have done. This is a major issue of concern. If we know that the test doesn't work, why aren't we looking into finding tests that work?

Sponsor of the bill, Rep. Dick Hess in a very determined and impassioned state: “Tell us what's better” if long-term antibiotics is not the answer. “Tell us what's better.” We have to use what is available to get them better; they need help now.

As far as what happens, I am unsure. But I'd have to say that there was some very compelling testimony in support of the bill.

The opposition once again used the “no evidence-based” treatment or trials supporting long-term treatment.

I also felt that the insurance representative that used the health care government package as an example and emphatically pointed out that the State would have to flip the bill to pay state mandated health care treatment, where the government would not, was a bit underhanded but did present a point worth pondering.

I'd like to thank Julia Wagner, Lyme Action PA, Rep. Dick Hess, and all the others that were instrumental in these proceedings. Your efforts and time are very much appreciated by many.


0 # RE: If Long-Term Antibiotics Is Not The Answer. “Tell Us What's Better.” — Lisa L Logue 2011-08-31 01:07

Thank you for posting this summary...I surely hope this gets passed...thank you to all who have helped get the bill this far! antibiotics-is-not-the-answer-tell-us-whats-better.html

Copyright © 2011 by Lydia Niederwerfer. All Rights Reserved.

john, i got this in my email today from lymeaware; hadn't had timeto read it but when i saw your post, decided to copy it here for us all to enjoy.

thanks lymeaware for your good detailed notes!! kudos,

bettyg, iowa activist, group leader, llmd coordinator

08/31/2011 04:58 AM
Posts: 669

When the "elite " get Lyme it's a different story.

They understand the PAIN.

them actions are taken Sad

08/31/2011 06:22 AM
Posts: 209

The side effects I get from long term treatment is I'm GETTING BETTER sure better than NO TREATMENT.. My strength is back my mental fog, ect, is gone all in 7 months only a few symptoms remain. And NO SIDE EFFECTS ! IDSA is full of CRAP !

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