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March 7, 2018 - Lyme Disease Advocacy at the AR State Capital

 

Lyme Disease Advocate Lori Lynn spoke at the Arkansas Rare Disease Rally about Lyme Disease in Arkansas.

SPEECH TEXT:

Hello. My name is Lori Lynn, and I am here today on behalf of thousands of Arkansans who are infected with Borrelia Burgdoferi - most commonly known - as Lyme Disease.

You've probably heard of Lyme Disease.

It is now the fastest growing infectious disease in the nation - with an estimate of at least 300,000 newly acquired cases every year.

But... the Arkansas Department of Health STILL claims that it is not only RARE in Arkansas - but that it is next to impossible to acquire in our state.

Because of this - We do not have the resources we need to heal. And we need YOUR help. That is why I am here today.

We know that ticks spread Lyme Disease. We know that the hosts that ticks choose to feed on - including birds - can and do travel across state lines.

There are 5 subspecies of Borrelia Burgdorferi, over 100 strains in the US, and 300 strains worldwide.

Our 2 tiered Lyme tests are designed to only detect ONE of these many strains.

3 different strains of Lyme disease have been detected in Arkansas ticks so far in recent tick research studies, and we suspect there may be more.

 

On May 10, 2017 - Our Governor - Asa Hutchinson, signed a proclamation declaring that MAY would be "Lyme Disease awareness month" in Arkansas.

This proclamation states how under-reported Lyme Disease is - especially in Arkansas -- how debilitating and even fatal it can be, And it encourages awareness and education - both for the public and medical professionals.

But just 15 days later - On May 25th - A spokesperson for the Arkansas Department of Health looked looked me directly in the eyes and stated - That they believe ---- All of the people in Arkansas who "feel" that they have lyme disease - do not actually have it at all - and that they "probably just have something else".

On the same day - they stated that some of the most well respected tickborne disease specialty labs in the world - to be so-called "back-yard labs".

They also referred to our Lyme Literate Medical Doctors as - "quacks".

The ADH quickly shot down the validilty of previous Lyme Disease research in Arkansas - and to my surprise - were not even aware of even the most well known published studies by the MIlitary.

 

The Lyme community had high hopes after Governor Hutchinson signed the proclamation. We were all very thankful - and were looking forward to the change that seemed promised.

But ..it has almost been a year now - and progress seems to have only taken steps backward.

 
I'll briefly explain. ..

Doctors and labs are required by law to report CDC positive cases of Lyme Disease to the ADH.

Over the past 2 1/2 years - over a 1,000 Arkansans went to their Doctor with symptoms of Lyme Disease and - Many with known tick bites and bullseye rashes. All of them tested positive for Lyme on their blood test.

ALL of them - except for 4 people - were then told by the ADH their tests were actually just a "false positive" - OR the tests were thrown out completely due to incomplete information on the report forms that their Physician submitted.

...And these were only the people who were tested by a Doctor and used a in-state licensed lab.

This number also does not include those who used a specialty lab out of state, or those with a "clinical" diagnosis from a Medical Doctor.

Most Arkansans are told by their Doctors that Lyme Disease does not exist in Arkansas - therefore testing is a waste of time and money.

They do this - because they are TOLD to do this.

Patients are then typically then given a diagnosis such as Fibromyalgia, Chronic Fatigue Syndrome, Arthritis, MS - and the much dreaded diagnosis of... "its all in your head".... Nothing that a few expensive popular pharmaceuticals cannot take care of.

 

SOMETHING IS VERY WRONG.

Something is VERY wrong when I can get long term Doxycycline for ACNE easier than I can for a serious spirochetal infection.

It is downright embarassing when your local veteranarian takes Lyme Disease more seriously than our Infectious Disease Specialists.

How is all this happening. ...when
Arkansas is rated amongst the highest in the nation for Tickborne Illness.
We should have medical facilities dedicated to treating them. We should be focused on educating our Doctors. We should have more funding for unbiased research and public awareness.

We must hold the department of health accountable - And properly educate the medical community with the latest - most accurate -Lyme disease research - and not the 20 year old doctrine that the ADH and the CDC still stands firm on.

Currently, Arkansans must travel out of state and even across country for proper Lyme treatment. The cost is not usually covered by insurance.

And we are treated like delusional mentally ill patients whenever we say "lyme" to our other medical providers and simply fear trips to the ER.

Many of us cannot afford proper care - and we lose our careers, our families, our homes, our lives.... -- and most often - our hope.

If our infection was caught early... - If we had the resources here in our state - if the AIDS- like stigma was GONE.... Then we would have a chance of beating this disease before it becomes multi-systemic and chronic.

PLEASE - CONSIDER LEARNING MORE ABOUT OUR CAUSE AND HELPING US CREATE CHANGE .

WE DESPERATELY NEED YOUR HELP. Another year cannot pass us by.

I sincerely thank you today for being here - and listening to ALL of our stories.
We are so often INVISIBLE.... and its very nice to be heard.

February 23, 2017 - Arkansas Dept. of Health PRESS RELEASE

The Arkansas Department of Health revealed that two cases of Lyme disease have been found in Arkansans.

These cases are the first that meet the Center for Disease Control and Prevention’s qualifications for the disease since 2007, according to an ADH press release.

Arkansas is considered a low-incidence state for Lyme disease. However, Arkansas has a high number of other potentially fatal tick-borne illnesses, including tularemia, Rocky Mountain spotted fever, and Ehrlichia.

Lyme disease is much more prevalent in Northeastern and Midwestern states.

“We know that Lyme is rare here, and we encourage doctors and patients to consider other diagnoses first,” said Dirk Haselow, ADH epidemiologist. “However, we are committed to finding cases of Lyme when they do occur. If a test for Lyme is done, it is important for the testing to be done correctly to meet the case definition. Doctors and patients can learn about proper testing and reporting for suspected Lyme cases on our website.”

The best way to protect against tick-borne illnesses is by preventing them. To avoid ticks, the ADH recommends using insect repellents, avoiding wooded and brushy areas with lots of leaf litter and grass, and walking in the center of trails.

References:

http://5newsonline.com/2017/02/23/arkansas-health-department-two-cases-of-lyme-disease-found-in-arkansas/

https://www.usnews.com/news/arkansas/articles/2017-02-24/health-department-confirms-2-lyme-disease-cases-in-arkansas

http://outbreaknewstoday.com/lyme-disease-low-incidence-state-arkansas-records-1st-cases-since-2007/

http://www.ozarksfirst.com/news/two-cases-of-lyme-disease-reported-in-arkansas/662140137

http://www.kait8.com/story/34587923/two-cases-of-lyme-disease-reported-in-Arkansas

http://www.thv11.com/news/local/arkansas-dept-of-health-says-two-cases-of-lyme-disease-found-in-state/413716860

CDC Confirms First Cases of Lyme Disease in Arkansas in a Decade

 

SPRINGDALE, Ark.- - New developments surrounding for Lyme disease in the natural state.

 

There are now two confirmed cases in Arkansas after a decade with no reports to the CDC.

Fox 24 spoke to a woman today who was denied treatment, and had to go out of state, because doctors claimed Lyme disease didn't exist in Arkansas.

 

"I want Arkansas to claim that we have it here, because we do, and people need to know that stuff," Alarie Bowerman said.

After a long battle with the Arkansas Department of Health and the CDC, Bowerman is finally getting the justice she's been looking for. 

Bowerman's two daughters have officially been confirmed with Lyme disease they contracted in Benton County.

"Last May all three girls got bit, we learned at that time that our state is a state that doesn't acknowledge that we have Lyme disease here, so there are no specialists in our state. We had to go out of state," Bowerman said.

The state said Lyme disease didn't exist in Arkansas since no cases have been confirmed since 2007. 

It is recognized in several nearby states -- and if a person was diagnosed with Lyme disease, doctors previously said it had to originate out of state. 

Dr. Naveen Patil with the Arkansas Department of Health Infectious Disease Program, told Fox 24 in a prior interview that we don't have Lyme disease in Arkansas.

“We have the ticks that transmit Lyme disease but we don't have any recorded cases of Lyme disease," Dr. Patil said.

But now the CDC and the Arkansas Department of Health are changing their tune.

Arkansas’ State Epidemiologist Dirk Haselow said guidelines are changing for Lyme disease in Arkansas.

“We evaluate every case and for a period of time, and I can't explain why, but we went seven years without a case or eight years now, but this year we have identified two cases that met that definition," Dr. Haselow said.

Bowerman still thinks doctors are hesitant to go all in and admit that Arkansas has a moderate incident of Lyme disease here.

“I think that once we're going through--You know the CDC is supposed to make a visit and in the next couple of weeks and when they do they are supposed to go through and look at all the cases and refile and see if they missed anything, so I'm hoping that this is a step in the right direction," Bowerman said.

 

She was told that in the next couple of weeks ADH will update its website and change its language to include reports of Lyme disease in Arkansas.

Reference and video:

http://www.nwahomepage.com/news/fox-24/cdc-confirms-first-cases-of-lyme-disease-in-arkansas-in-a-decade/662200299

Lyme In Arkansas 

LITTLE ROCK (KATV) -Pre-teen sisters from Springdale are suffering from Lyme disease - the first cases recognized by the Arkansas Department of Health in a decade.

The Lyme disease community in Arkansas feels vindicated.

They have been saying for years that not only does Lyme disease exist in Arkansas, it is devastating lives.

"I could not move my bones,” says Torey Harrison of Little Rock. “My joints ached. My head was pounding. I felt dizzy."

Harrison is a sophomore at Ouachita Baptist University. She got Lyme disease while in high school.

"For me, I had to miss 11 weeks of school to go all across the U.S. to get tested to become positive,” says Harrison. “And now that we have the testing here more readily available, it will give them a different future than what I had to go through."

 

"We know that it's here,” says Lori Lynn Sikes with the Arkansas Lyme Foundation. “And these two cases confirm it. And we hope that it will open up the door for more awareness, which will in turn lead to doctors accepting the fact that Lyme disease is worth testing for."

"Shortly after I visited with y'all last time I started my first round on my pick line,” recalls Christy Davis of Poyen. “And it was really rough."

In November of 2015, we visited with Davis who was having to go to Washington D.C. to get treated for her Lyme disease.

She has since found a doctor in Louisiana.

She hopes one day soon Arkansas doctors will consider testing and treating for Lyme.

"A friend of mine, they caught his right away,” says Davis. “And he didn't go through anything like I've been through or my friends have been through. So I do think that's a big problem is I went so long and I wasn't diagnosed."

A tick found in Saline County was recently sent to a California lab for testing. The result? It was positive for Lyme disease. UAMS is about to begin more such testing.

Reference and video:

http://katv.com/community/7-on-your-side/lyme-in-arkansas

Arkansas Dept. of Health says two cases of Lyme disease found in state

 

LITTLE ROCK, Ark. (KTHV) -- Lori Lynn Sikes co-founded the Arkansas Lyme Foundation after her personal struggle getting diagnosed with Lyme disease and meeting people with similar struggles.

“People are dying and I’m not exaggerating, people are calling us every week in desperate situations,” said Sikes.

She said she has spoken with numerous people who have been turned away for Lyme disease testing in Arkansas. She said some of the people that did have positives tests, were being told they were false positives. She believes some Arkansas doctors are misinformed by thinking that Lyme cannot happen here in Arkansas and because they think that, they won't test for it or they diagnose it as something else.

“I (we) have over 150 friends that have a positive diagnosis for Lyme in Arkansas that I’ve met just since this fall,” she said.

Her (their) goal is to work with doctors and the Arkansas Department of Health to better educate Arkansans on Lyme disease.  

 

The Arkansas Department of Health said they understand concerns, but researchers have classified Arkansas as a low-incident area for Lyme disease. Dr. Dirk Haselow, the Arkansas State Epidemiologist, said the problem is that testing for Lyme disease has never been as definitive as it is other diseases.

“It’s very controversial and there is a lot of research being aimed at testing Lyme disease,” said Haselow.

He said there's a difference on what doctors might diagnose as Lyme disease and what the Department of Health can classify as a reported case of Lyme disease.  He said their hands are tied on what to count because they use a national case definition that groups of medical experts came up with. He said classification and diagnostic methods have caused controversy between doctors.

“A different group of people have evolved over time and they call themselves Lyme literate physicians,” he said. “They use a different algorithm and these two groups don’t agree on how Lyme should be diagnosed.”

He said the Arkansas Department of Health is doing what they can to examine each possible case effectively. He also said that representatives from the Centers for Disease Control have been on site helping them with Lyme surveillance efforts, among other things, for the last few days.

Reference and video:

http://www.thv11.com/news/local/arkansas-lyme-foundation-claims-over-150-lyme-disease-cases-in-state/414489522

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