Archive for the ‘Uncategorized’ Category

Call to Action/Lyme Patients

On January 26 and 27, Lyme patients and patient advocates from around the United States will join together and call on Congress to take decisive action to address the out of control epidemic of Lyme disease and related tick-borne illnesses.

We are concerned about CDC’s failure to contain this epidemic, and we are concerned about conflicts of interest and violations of federal law that contribute to the preventable suffering of thousands of chronically ill patients.

We are especially concerned that CDC continues to provide preferential treatment to the Infectious Diseases Society of America (IDSA) by promoting the 2006 IDSA guidelines for Lyme disease, which are noncompliant with federal standards, while withholding information from the public about the 2014 guidelines from ILADS, which are compliant with current standards and reflect the best available science.

Especially disturbing is that the CDC officials providing the preferential treatment are also members of IDSA, the organization receiving the preferential treatment—a serious conflict of interest.

CDC’s preferential treatment harms many thousands of chronically ill patients, who are misdiagnosed and denied medically necessary treatment due to restrictions imposed by the IDSA guidelines. Many thousands of chronically ill patients face financial hardships from out-of-pocket costs and lost income. The burden on our economy is enormous, the suffering is widespread, and much of this is preventable.

You can make a Difference

It’s easy and takes less than 10 minutes. All you need to do is make three phone calls: one call to each of your U.S. Senators, and one call to your representative in the U.S. House.

 

Senate staff have reported that telephone calls make a much stronger impression than email, because emails can easily be automated. They say getting 100 phone calls on a topic in a single day is considered “a lot”. We can do that…and much more.

To Find your Representatives and Senators, go to:  https://www.nationalpriorities.org/take-action/know-your-representative/

 

For sample scripts to read from, go to: https://www.facebook.com/events/1739734586248693

The event has pinned post with a photo of a phone. After you have made your phone calls, “like” the photo. The number of likes will provide a real time counter to monitor the response. Also, post the name of your state, so we can gauge the response in each state.

Ask your friends, family and neighbors to participate. If they are not on Facebook, email this information to them. To make it easy for neighbors, print copies of the script with the telephone numbers. Ask if they are willing to spend 10 minutes to make three phone calls that will help provide a wakeup call to Congress to act decisively to address this out of control epidemic.

Petitions

This campaign leverages three Change.org petitions, with more than 65,000 combined signatures. Please sign them to show your support.

End Preferential Treatment of the IDSA Guidelines for Lyme Disease petition to the Centers for Disease Control and Prevention  http://tinyurl.com/CDCpetition

Calling for Congressional Investigation of CDC, IDSA & ALDF petition to the U.S. House of Representatives, U.S. Senate  https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

Legalize Lyme Disease petition to President Barack Obama, U.S. House of Representatives, U.S. Senate  https://www.change.org/p/president-obama-and-congress-a-call-to-legalize-lyme-disease

 

 

 

 

 

Bee Venom Therapy Class

Drum roll please……

I am proud to announce that Providence is bringing us DiveGirl Deb to our next Madison Lyme Support Group meeting on Saturday, February 6 from 2:30-4:30 at the Pinney Library in Madison!  

For Deb’s site and to read about her journey, go to:  http://flippinlyme.wix.com/flippinlyme#!home/c121p

Deb has regained her health due to Bee Venom Therapy (BVT). “I’m getting my life back. I have control of my healing. Best of all my sense of humor is restored. This feels great. If I can get better in mere months of treatment, anyone can!”  

And:

“This is a highly effective form of treatment which most any patient can afford. I was spending $32/month for my mail order bees and treating at home.”

For videos by Deb go to:  http://flippinlyme.wix.com/flippinlyme#!videos/cuzq

Apitherapy to treat Lyme & Co-infections  Eugene OR  (For the written protocol, vendor links, and more materials go to:  https://www.facebook.com/groups/1492038901037893/

http://www.blogtalkradio.com/flippinlyme

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Please consider giving to the Flippin Lyme Foundation to help pay for Deb’s airfare.  Extra proceeds will be used to help other Lyme patients learn BVT.  Thank you.

http://www.igive.com/welcome/lp15/wr34.cfm?c=72333

https://smile.amazon.com/ch/47-3483018

Mission

I was a General Contractor, Cost Estimator & Project Manager prior to falling down with Lyme Disease. I still have these skillsets. As I continue to heal with my Bee Venom Therapy, I’m looking to the brighter future.

I used to buy distressed properties and flip them. I made great money doing it. I’ve got healing to do yet, but I want to begin to work at pulling this together so we are ready to launch when I’m healed.

I want to make a real living again and I certainly want to give back to my wonderful Lyme Community.

What I propose is: Form an investment group which can fund us with private funding. I’m looking for a $500,000 line of credit. I need investors with private funds.

We will purchase distressed properties. Rehab them, we’ll hire who we need and flip em fast. The profits go to build up the foundation. The investors earn interest on their funds.

We could make hundreds of thousands of dollars for our cause and get some great media coverage to raise awareness while patients on BVT heal.

~ DiveGirl Deb
Interested parties, may contact me at
FlippinLyme@gmail.com

(541) 854-5336

 

 

 

Latest ILADS News

Dr. Samuel Shor, FACP is the new ILADS president, and the three new members on the ILADS Board of Directors are Dr. Sam Rahbar, Dr. Phillip DeMio, and Dr. Stephen Bock.

636 papers were listed on PubMed in 2015 that were either related to Lyme Disease, borreliosis, or Borrelia burgdorferi.  This is good news as medical professionals commonly use PubMed to look for research.

Upcoming opportunity:  

Dr. Brian Fallon’s group at Columbia University is about to launch a new study that includes comprehensive assessment of patients with chronic post-treatment Lyme pain as well as treatment. They’re hoping to be able to find alternative treatment for patients with persistent pain who have already had considerable antibiotic therapy. The assessment includes multiple modalities, including a functional MRI and MR Spectroscopy component. The treatment involves two medication therapies – one that impacts the neuroepinephrine pathways for chronic pain and the other which targets the glutamatergic pathways. The assessments and treatment are free of charge to the patient.

For more information go to:

http://www.columbia-lyme.org/research/cr_research.html.

 

 

January Mtg Reminder

Our Next Support Group Meeting will be this coming Friday, January 15 from 5:30pm-8:45pm at the Pinney Library in Madison.
Hope to see you there!

Frankinbugs

93716629

https://www.sciencenews.org/article/gene-drives-spread-their-wings  Proponents claim that diseases like malaria and Lyme Disease could be wiped out, along with invasive species, herbicide-resistant weeds and pesticide-resistant bugs.  Dream come true?  Even animals with harmful viruses could be immunized easily due to gene drives, which are clever bits of engineered DNA designed to propel themselves into the DNA of a pesky or troubled organism. It is a targeted contagion intended to spread within species, forever altering the offspring, and purposely upending natural selection.

With the emergence of CRISPR (clustered regularly interspaced short palindromic repeats), gene drives have become a reality. Geneticist Hugo Bellen claims, “Everything is possible with CRISPR.” “I’m not kidding.”

In 2012, researchers figured out how to literally cut and paste nearly any gene into any organism. Usually, organisms have a 50 percent chance of passing a gene to an offspring. The gene drive makes sure the gene gets passed more often due to it being copied into the chromosomes from both parents.

Biologists Gantz and Bier reported online in Science that they had created a gene drive in fruit flies to turn them yellow. The experiment worked the first time, but it wasn’t perfect. Four percent of the females had patches of both normal and yellow cells. They called it a “mutagenic chain reaction,” but it was the first time a CRISPR gene had been deployed.

The fly in the ointment could be releasing all of this into the wild. So far, researchers have kept the gene drives in the lab, where there are obvious limitations and containment, but theoretically, just one of these engineered organisms could wipe out an entire population, where international boundaries would not be respected.

http://singularityhub.com/2015/11/29/gene-drives-can-eliminate-transmissible-diseases-for-good-but-whats-the-price/  Dr. George Church, a gene drive researcher at Harvard, believes there needs to be failsafe mechanisms, which in essence involves another gene drive – a kind of reversal should something go wrong. It’s only worked in yeast, so far.

http://www.nature.com/news/crispr-the-disruptor-1.17673  “It is essential that national regulatory authorities and international organizations get on top of this — really get on top of it,” says Kenneth Oye, a political scientist at the Massachusetts Institute of Technology and lead author of the Science commentary. “We need more action.” The US National Research Council has formed a panel to discuss gene drives, and other high-level discussions are starting to take place, but Oye is concerned that regulatory changes may happen only after a high-profile gene-drive release, in other words, after it’s too late. (For a five minute audio of reporter Kerri Smith investigating the meteoric rise of CRISPR click on the link above.

Gene drives can be tricky. In the case of malaria, for instance, researchers had to inject Cas9 and guide bits of RNAs and DNA containing the gene drive into a mosquito egg, which is less than a millimeter long. Another difficult issue is knowing which gene or genes to disrupt or incapacitate in a pest.

On top of those difficulties, scientists do not know how all of this will affect ecosystems and are unclear if the gene drives could spread to closely related species. Ecologist Allison Snow also doubts that weeds could be gene-drive engineered to eliminate herbicide resistance. “These early predictions are rosy,” she says. Other scientists claim it’s going to be many years before anything is released into the wild.

Recently, the European Union ruled that CRISPR plants are GMO’s and should be similarly strictly regulated:  https://www.technologyreview.com/the-download/611716/in-blow-to-new-tech-europe-court-decides-crispr-plants-are-gmos/

“It means for all the new inventions … you would need to go through the lengthy approval process of the European Union,” Kai Purnhagen, an expert at Wageningen University in the Netherlands, told Nature.

http://www.the-scientist.com/?articles.view/articleNo/41027/title/Opinion–On-the-Irreversibility-of-Gene-Drives/  Noam Prywes, PhD candidate in chemistry at Harvard, points out that scientists have addressed destructive invasive species before with bad results. He remembers the introduction of cane toads to take care of the gray-backed cane beetle, and that Australia still suffers – with these toads actually reducing native reptiles, while hardly putting a dent in the beetle population. He claims that CRISPR/Cas-9-based gene drives will “add a twist – introducing one gene drive after another to correct unforeseen consequences as they are discovered,” and that “decisions by researchers would become permanently written into the genomes of entire wild populations.” He also adds that there are alternative ways to wipe out local populations of mosquitoes carrying disease that are much safer.

In this same vein, David Burwitz of Tel Aviv University, feels that gene drive research should be classified to prevent weapon development, and he’s not alone.

http://nextstageprep.com/gene-drivesthis-next-weapon-mass-destruction/  In theory, a terrorist could create a handful of insects with a gene for making a toxin, and power it with a gene drive. Pretty soon, all of these insects would make the toxin, and every insect bite would be lethal.  However, according to Austin Burt, who proposed the theoretical method for making gene drives, the gene drives only work in sexually reproducing species, unlike the vast majority of genetically engineered microbes which produce asexually and they’ve only been shown to work for one generation – so far.

Eradicate Lyme Disease or decimate the ecosystem?  I’m chuckling because I know what most of you would say.