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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

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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.

Merry Christmas

This season I share the store of Jesse Colin Young, 60’s singer and songwriter, who has an all too familiar story to tell, one that includes depression, anxiety, cognitive issues, and panic attacks.

The good news is someone put an ILADS pamphlet into his hands.  He thought, “Good God, this sounds like my biography….maybe I have Lyme Disease?”  

The following Youtube is one of Young’s most memorable songs.   Crank it up!

For the entire interview where he discusses his journey with Lyme Disease, go to:  http://www.classicrockhereandnow.com/2014/07/jesse-colin-young-exclusive-legendary.html

You too can be instrumental in changing someone’s life.  All it takes is listening, connecting dots, and pointing people to resources and maybe handing them a pamphlet.

http://www.lymediseaseassociation.org/images/NewDirectory/Resources/LDA_Brochures/ABC_2009.pdf  – created for parents and educators

http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=52&Itemid=39  To Order LDA Handouts
The Lyme Disease Association provides the following handouts:

LymeR Primer (pdf) Awareness Brochure: symptoms, tests, tick identification, diseases ticks carry, prevention, tick removal, tick testing, general facts and symptoms about Lyme and many tick-borne diseases.
Tickmarks – Bookmarks (pdf) Awareness Bookmark: pictures of ticks, diseases they carry, proper tick removal.
ABC’s of Lyme Disease (pdf) Brochure For Parents & Educators: specialized information on children in areas of ophthalmology, psychotherapy, neuropsychiatry, gastroenterology, pediatrics, rheumatology, co-infections, education.
TickCard (pdf) Business Sized Awareness Card: pictures of ticks, diseases they carry, symptoms and tick removal

Closing in on the 8%

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http://lymewhisperer.com/2015/12/13/kripalu-closing-in-on-the-8/

We are closing in on the 8%, Dr. Horowitz whispered.

At the Beyond Lyme and Other Chronic Illnesses: Reclaiming Your Health and Well-Being, conference, Dr. Horowitz and Ying Zhang from John Hopkins, revealed they are having success with mycobacterium drugs, such as dapsone (pyrazinamide) for their most serious cases – the 8% of folks who do not respond well to treatment. These drugs are used in leprosy and tuberculosis to target the bacteria that have become “persisters,” which do not respond to typical antibiotics.

http://beforeitsnews.com/health/2015/10/lyme-disease-persister-drugs-dr-ying-zhang-2593390.html  Interview with Professor Ying Zhang at the NorVect Converence 2015. Zhang’s work with TB helped him see the similarities to Lyme concerning persisters.

Horowtiz, the General MacArthur of MSIDS, has laid out most of his battle plan in the book, Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease. In a nutshell, he combines 2-3 intracellular antibiotics to reach the persister bacteria inside the cells. He calls this the “triple persister” cocktail. Then he pulses with a cellular antibiotic, which is based on work by professor and researcher Kim Lewis of Northeastern University.  http://aac.asm.org/content/early/2015/05/20/AAC.00864-15.abstract

http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/

“This is the first time, we think, that pulse-dosing has been pub­lished as a method for erad­i­cating the pop­u­la­tion of a pathogen with antibi­otics that don’t kill dor­mant cells,” Lewis said. “The trick to doing this is to allow the dor­mant cells to wake up.”

Horowitz has found this regimen to be very successful, but the addition of dapsone for the most difficult cases could be the magic key.

At the seminar they discussed why so many are getting MISDS. The reasons given were:

  • Sexual Transmission
  • Maternal Transmission to fetus
  • Blood transfusions (4 out of 1,000 transfusions are now believed to transmit Babesia.
  • Constant discovery of new borrelia species and new co-infections
  • Horrible diagnostic standards
  • Fox population decrease. This increases the mouse population – probably the number one reservoir for ticks.
  • The reality of persisters – bacteria that persist despite antibiotic treatment
  • Migrating birds – why the Lone Star tick is now in the eastern U.S. This tick can detect body heat and carbon dioxide from 15 feet away and will aggressively move towards the source.
  • Infected tick mothers pass infections to their off spring
  • Climate change – ticks are emerging 3 weeks early
  • Healthcare politics

Overview of different forms of Borrelia:
http://www.lymebook.com/top10forms

Overview of antibiotics that attack different forms:
http://www.treatlyme.net/treat-lyme-book/kills-lyme-germs-a-brief-antibiotic-guide

Horowitz is optimistic about the future and already feels things are starting to change in the diagnostics world with work on a new “C6 Elisa Test” that picks up more strains of Borrelia. Also, more are starting to believe that having ONE band is enough for a clinical diagnosis of Lyme, if other diseases have been ruled out. He feels a final hurdle; however, is for the PCR test to address additional strains of Borrelia.

Horowitz will publish this work on his patients in the upcoming year.