Archive for the ‘Activism’ Category

The Green Envelope Project Lyme Patients Can Do From Bed

Green Envelope Project Revised (Go here for letter to print off)

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Mission: To flood the White House with as many letters as possible in the month of May to increase awareness of Lyme disease and the issues surrounding it.

Rationale: May is Lyme Awareness month and, with the Lyme disease march occurring in Washington, DC at the same time, this will further generate awareness especially with the representatives in DC.

We encourage you to participate and, even if you can get one other person to participate, we can make a difference!

Instructions to participate

  1. Print out the letter {We chose to make it a generic letter that both Lyme sufferers and their friends and family use. We are not having people write their own stories at this time as it increases the difficulty for many Lyme sufferers and we want to make it as easy as possible}
  2. Sign your name on the bottom of the next page
  3. Print out the letter on the second page of this document and place it in a GREEN envelope {The green envelope is the attention grabber}
  4. Adding your own email or address at the bottom is optional
  5. Address it to:
    The White House
    1600 Pennsylvania Avenue NW Washington, DC 20500
  6. Send it on May 1st 2019 or throughout the month

*Things to remember: This is not about political parties or thoughts about who is in office, but to stand together in one voice to make an impact and create change. The letter may not include everything that you may think needs to be included, but with the complexity of this disease, it is important to focus on the key issues and to keep it as straight forward as possible

*We do encourage that if you want to share your story in detail or want to address issues that are not added in this letter, that you do so separate from this project. This is project is just one way to spread awareness, and we want as many people to be involved and send letters.

Letter states:

Dear President Trump:

There are only 30,000 cases of CDC identified Lyme cases each year. The CDC estimates the actual number is closer to 300,000 cases a year. That is 270,000 A YEAR that go undiagnosed or misdiagnosed according to the CDC standards. Getting a Lyme diagnosis is almost impossible because the CDC believes that their current two-tiered approach to testing for Lyme is sufficient, although there is evidence to show it gives false negatives over 50% of the time (this is the same test they have used for decades). Countless individuals have to pay out of pocket for testing that, is more accurate, but not currently approved. Some individuals have died because their diagnosis came too late.

The lack of physician education to Lyme disease is shocking. Many physicians will refuse to test for Lyme disease, if they do test, they are unaware of the ineffectiveness of the testing. Some physicians will not treat with positive tests or will undertreat. Some of the affected individuals that are lucky enough to get the “standard” treatment, but continued to have symptoms, will be told that they no longer have Lyme and that they should feel fine. Most are told they are either mentally ill,hypochondriacs, stressed out, or just to “suck it up.” All the while, these individuals are fighting debilitating horrible symptoms while trying to get the help they need.

The CDC is ignoring research that shows the bacteria is persisting after the standard dose of antibiotics were given. There are Lyme Literate Physician’s (LLMD) that believe and attempt to treat Chronic Lyme disease. Within the mainstream medical community, these physicians are seen as“quacks” taking advantage of a group of mentally ill individuals who “think” they are sick. Thesephysicians use multiple modalities and go against “standard medical guidelines” to help a group ofpeople that no one is helping, risking their license in the process. These Lyme sufferers have to search to find these physicians, and often must travel long distances, as well as shell out hundreds of thousands of dollars out of pocket.

They have lost jobs, homes, family, and friends to a terrible illness. The CDC has had decades to work for them and come up with testing and solutions. They have not, and it is evident that they will not.The people who have been pushing this under the rug need to be held accountable and Lymedisease needs to be addressed….by people that actually will address the real issue, Chronic Lyme exists and is destroying lives. They need to be heard, believed and helped.

To respond please send to _____________________________________________.

Sincerely,

____________________________________

Category:

Activism, Lyme, Uncategorized

Top 5 Myths About Lyme – Dr. Dempsey on Fox News

https://dms.licdn.com/playback/C4D05AQG-qO15mnPTZw/bcfa97f0454c4969a4be3b100a253788/feedshare-mp4_3300-captions-

Click on link for news story

Fox 61 News discusses the Top 5 Myths About Lyme Disease with Dr. Tania Dempsey of Armonk Integrative Medicine, Armonk, New York

Fantastic job Dr. Dempsey!

Then they talk about tick prevention:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

Dr. Dempsey on Bartonella:  https://madisonarealymesupportgroup.com/2018/05/07/fox-news-bartonella-is-the-new-lyme-disease/

 

Category:

Activism, Lyme, Testing, Ticks, Transmission, Treatment

Proclamation: May is Lyme Awareness Month in Wisconsin

http://docs.legis.wisconsin.gov/raw/proposal/2019/-2392

2019 SENATE JOINT RESOLUTION 28

April 30, 2019 – Introduced by Senators TIFFANY, BEWLEY, COWLES, DARLING, LARSON, MARKLEIN, OLSEN, RINGHAND, RISSER, SCHACHTNER and L. TAYLOR, cosponsored by Representatives OTT, ANDERSON, BALLWEG, DUCHOW, EDMING, FELZKOWSKI, HEBL, HORLACHER, KULP, KURTZ, LOUDENBECK, MAGNAFICI, MURPHY, MURSAU, MYERS, PLUMER, PRONSCHINSKE, ROHRKASTE, SARGENT, SINICKI, SHANKLAND, SPIROS, SPREITZER, STUBBS, TAUCHEN, THIESFELDT, TUSLERand VRUWINK. Referred to Committee on Senate Organization.

Relating to: proclaiming May 2019 as Lyme Disease Awareness Month. Whereas, Lyme disease is a bacterial disease transmitted to humans by an infected tick commonly known as the black-legged or deer tick; and

Whereas, according to the Wisconsin Department of Health Services, the disease was first recognized in the United States in 1975 in Lyme, Connecticut; and Whereas, Lyme disease is the most commonly reported vector-borne illness in the United States, with an estimated 300,000 Americans diagnosed each year, and it is also the highest reported tick-borne disease in Wisconsin, with more than 45,000 cases reported between 1980 and 2017; and

Whereas, signs and symptoms generally set in after 3-30 days and commonly include a fever, headache, fatigue, and a circular skin rash called erythema migrans (“EM”); and

Whereas, if left untreated, the infection may spread to other parts of the body, producing symptoms that include additional EM lesions, facial or Bell’s palsy, severe headaches and neck stiffness, pain and swelling in large joints, fatigue, cognitive decline, shooting pains, and heart palpitations; and

Whereas, although Lyme disease is often difficult to diagnose, the disease can be treated successfully with oral antibiotics or injectable antibiotics if it is detected early; and

Whereas, the best ways to prevent Lyme disease are to avoid wooded and bushy areas with high grass, use repellants with 20 to 30 percent DEET, wear light-colored clothing to cover exposed skin, and check skin thoroughly after being in areas where ticks may be present; and

Whereas, according to the Centers for Disease Control and Prevention, in 2017, nearly 94 percent of the over 29,513 Lyme disease cases in the United States were reported from only 14 states, with over 1,794 of them reported from the state of Wisconsin; and

Whereas, it is important to provide information and raise public awareness of Lyme disease causes, effects, and treatments and to emphasize important education and research efforts surrounding Lyme disease and other tick-borne diseases; now, therefore, be it

Resolved by the senate, the assembly concurring, That the legislature recognizes May 2019 as Lyme Disease Awareness Month in Wisconsin and commends this observance to all residents; and, be it further

Resolved, That the legislature calls upon all residents to learn about the importance of tick avoidance and personal protection, tick detection and removal, the signs and symptoms of tick-borne illnesses, and the need for prompt diagnosis and treatment of Lyme disease.

_________________

More on tick prevention:  https://madisonarealymesupportgroup.com/2019/04/12/tick-prevention-2019/

The most effective thing not listed in this is permethrin on your clothing. Research has shown it to be very effective.  Details in link.

Category:

Activism, Lyme, Prevention

Sun Prairie Woman Warns of Lyme Disease’s Lingering Effects

Woman warns of Lyme disease’s lingering effects

SUN PRAIRIE, Wis. – As Wisconsin enters peak tick season, a Sun Prairie woman is sharing her story battling Lyme disease, saying there’s more to it than you might think.

“First of all, I am a plant freak. I love them,” Alicia Cashman said. “I used to be outdoors all the time.”

Now, Cashman brings the outdoors indoors.

“Now I look at the outdoors like you were a soldier in Vietnam and there’s landmines,” she said. “Where’s the landmine? I don’t know.”

Cashman’s landmines are a bit smaller. She’s always on the lookout for ticks after she and her husband began having symptom after unexplained symptom about 12 years ago.

“Red, hot to the touch, I developed a fever. I started seeing flashing lights,” she said. “All of a sudden your life just goes to pot, and you can’t figure out why.”

Her husband developed anxiety and severe insomnia. In both cases, Cashman said it all came back to Lyme disease.

“Lyme is not what you think it is,” she said. “It’s way more complicated and complex.”

“We do know if people aren’t treated early, sometimes they go on to have lifelong symptoms,” said Susan Paskewtiz, a professor and chair of the University of Wisconsin Madison’s entomology department.

Paskewtiz said the initial infection of Lyme disease can change people’s bodies.

“Perhaps you’re forever altered as a result,” she said, adding that it can include heart issues, neurological symptoms and migrating joint pain, all things Cashman experienced. But early treatment can stop that, and that starts with early detection.

According to Paskewtiz, Wisconsin ranks among the top states for diseases transmitted by ticks.

“We have a lot of deer ticks here,” she said. “We have some places here where we’ve collected more ticks than recorded in the country, that’s very focal, a couple locations like that, but we’re high.”

Officials are already warning of ticks this year, and the city of Madison has seen the number of deer ticks rise significantly this month, according to a recent release.

Paskewitz said not everyone gets the characteristic bulls-eye type mark indicating Lyme disease, so flu-like symptoms including muscle aches and a fever can be other signs.

She said while there are usually about 3,000 to 4,000 reports of Lyme disease in the state a year, cases are likely under-reported, and she estimates the real number to be 10 times that.

Paskewtiz said there are two important things Wisconsin residents should know this year. Ticks can be as small as a freckle and found in places you might not expect.

“Usually, we recommend to people lawns are a pretty safe place,” she said, “but we’re finding them in those locations, as well.”

Cashman can still visit her plants outdoors, it just takes a bit more work. She gears up, wearing light-colored, protective clothing, and chemically treats both her clothes and yard.

“I’m doing great, but it’s taken 4 1/2 years of treatment, and I literally went from, ‘I want to die,’ to ‘I have my brain back,’” she said. “Where before, I didn’t think about it, now it never leaves my mind.”

She hopes others will keep the disease in the back of theirs.

“You can’t afford to be lazy,” she said.

Cashman now leads the Madison Area Lyme Support Group, which is presenting a free viewing of the documentary “Under Our Skin” Saturday at the East Madison Police Station May 4. She recommends those diagnosed with the disease check out the nonprofit organization the Wisconsin Lyme Network.

The Centers for Disease Control and Prevention describes patients with symptoms after the treatment of Lyme disease as having post-treatment Lyme disease syndrome, and the organization writes its cause isn’t known.

The CDC said alternative treatments for Lyme disease have been associated with complications, and its best to use care and consult a physician.

________________

**Comment**

So thankful Dr. Paskewtiz filled in many of the points I wasn’t able to make. Although I shared how all my initial symptoms were gynecological and that I believe Lyme to be a STD as well as spread congenitally, they opted to leave that intel out.  https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/

https://madisonarealymesupportgroup.com/2018/06/19/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review/

Unfortunately, the statement that a tick’s gut is a literal garbage can full of pathogens of which Lyme is only one of many, also was omitted.  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/

We are slowly pushing this thing up the hill.  Just a few short years ago, nothing would have been said about the “lingering symptoms,” so that’s a huge improvement, but of course there’s much, much more to be done.  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  BTW: Ahern states it’s 60% that have lingering symptoms – so it’s a significant subset of patients.

Regarding PTLDS: https://madisonarealymesupportgroup.com/2019/04/05/post-treatment-lyme-disease-syndrome-a-review-of-its-origin-its-consequences-in-the-socio-economic-sphere/  Excerpt: 

It is demonstrated that the chronic symptoms of Lyme disease are a reality, referred to as: Chronic Lyme disease (CLD); or Syndrome- Post-treatment of Lyme disease (PTLDS).

As we said at the beginning, the CDC does not recognize the term Chronic Lyme Disease (CLD) because it is confusing[1].

With respect to this, we conclude that the CDC is wrong because data demonstrated that months or years after adequate treatments with antibiotics, patients can have the same or worse symptoms, which gives truth to the term: chronic Lyme disease (CLD).

I told the reporter that had I followed the advice of the CDC I’d be dead by now. The tiny but overriding statement at the end of the article about “alternative treatments for Lyme disease have been associated with complications,” is a complete “Catch-22,” because anything but essentially 21 days of doxycycline is considered alternative to the CDC and that’s a huge problem.  And by “consulting a physician,” that’s also setting people up for failure as there are only a handful of doctors in the entire state of Wisconsin who are properly trained and treat this monster appropriately. The same can be said of other states as well.

Sigh……well, there’s always next year!

 

 

Category:

Activism, Lyme, Psychological Aspects, Ticks, Treatment

S.O.S. Documentary

SOS Lyme Trailer

By

PRESS RELEASE – LAUNCH OF NEW LYME DOCUMENTARY

Lyme disease is a terrible disease and also the fastest growing epidemic in the world; difficult to detect and treat. Too little money, treatment options and social attention ensure that patients are left to their own devices. To denounce this, a group of Lyme patients is campaigning for the SOS Lyme Epidemic .On the eve of the Week of Tick 2019, a new Lyme documentary – which patients have made themselves- will be launched SOS, “an invisible epidemic” by director Pim Giel.Lyme disease is an infectious disease with a greater impact than we all think. The WHO even speaks of a new epidemic. International experts are now successful with a new international guideline (ILADS) for the treatment of chronic Lyme disease. But this is hardly recognized in the Netherlands and Belgium by politics, science and health insurers. As a result, patients are deprived of treatment, care and other facilities; in fact, they are left to their own devices. Only patients with sufficient personal money can go abroad for this. Patients themselves often have no money (anymore) for a treatment and are becoming increasingly ill. Sometimes resulting in death or euthanasia.

CAMPAIGN LYME PATIENTS FOR RECOGNITION OF CHRONIC LYME DISEASE

In the Netherlands and Belgium, a group of thousands of Lyme patients are taking action to ask the general public for attention and recognition for the dire situation they are in. With the (media) campaign SOS Lyme Epidemic , they are fighting for a breakthrough in the deadlock of treatment of chronic Lyme disease and for breaking the injustice. Various benefit campaigns and the petition https://iladsvoorlyme.petities.nl are part of this campaign, which is supported by ambassadors and former Lyme patient actor Miro Kloosterman, rapper / singer Pete Philly and in Belgium politician John Crombez and presenter Roos van de Acker .The patients are working hard – with the help of Nicolette van Dam, among others – to collect the necessary 40,000 signatures to present to parliament in May – the Lyme awareness month.

DOCUMENTARY SOS LYME, ‘AN INVISIBLE EPIDEMIC’

The patients, in collaboration with Stichting Happy Motion, have made the documentary SOS Lyme, ‘an invisible epidemic’ with the aim of distributing it internationally. The film by director Pim Giel discusses the severity of Lyme disease such as paralysis, pain, spasms, but also about the consequences such as, out-of-home placement, alleged child abuse, euthanasia, benefit issues and misdiagnosis. Not only patients with chronic Lyme are in the video, but also international specialists like Dr. Richard Horowitz (USA), Dr. Armin Schwarzbach (DE), Prof. Dr. de Meirleir (BE), Dr. Burrascano (USA), Dr. Klinghardt (US) as well as experts from the Netherlands.

The documentary is the heart of the Lyme Patients campaign: “In this documentary we want to show what it’s like to live as a patient with this misunderstood and terrible disease,” said campaign leader Daisy. “It is a film about injustice, struggle and conflicting interests.”

FILM SCREENINGS AND LYME GATHERINGS IN THE COUNTRY

The documentary will be made accessible to a wide audience through the website and can be seen at various Lyme meetings that will be organized in the country. With a crowdfunding campaign the Lyme patients try to support the creation of the film and their campaign.

Note for editors
For more information, interviews (with campaign leader Daisy, filmmaker Pim Giel), photo materials, etc., please contact Bastiaan Piloo, producer b.piloo@happymotion.org +31(0)6 – 11 621 411

For more information, visit

About the Happy Motion Foundation
With documentaries, digital media, events and education, the foundation brings serious themes to the attention of a wide audience in a positive way. In this way it wants to give vulnerable groups in our society the recognition and support they deserve. www.happymotion.org

Go here to support & watch the documentary:  https://www.lymeepidemie.nl/documentary/?lang=en

 

 

 

Category:

Activism, Lyme