Archive for the ‘Activism’ Category

MyLymeData2018 Conference Presentation – Lorraine Johnson

  Approx 30 Min.

LYMEPOLICYWONK: Presentation at MyLymeData2018

Wondering if medical marijuana is effective at controlling the pain associated with Lyme disease? How other patients are treating their fatigue and insomnia? Which treatments have the most side effects?

Watch the presentation from MyLymeData2018 conference to find out.

With over 11,000 participants enrolled, the MyLymeData project is already giving us the answers to the fundamental questions that sick patients want to know. It collects information about the actual experience of Lyme patients–their symptoms, their treatments, what has helped and what hasn’t. This helps researchers target what’s most important–and helps us all learn from each other.

If you are already a member of MyLymeData, we thank you for your continued partnership. If you have Lyme or have had it at any time in the past, please join and help us communicate to academic researchers, scientists and policy makers. We look forward to continuing this vital research.

Lorraine Johnson, JD, MBA, is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient-centered big data project, MyLymeData, please register now.

https://www.lymedisease.org/lymepolicywonk-mylymedata2018/

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If you haven’t joined MyLymeData, I encourage you to do so.  The information gathered is the first of its kind and is often the ONLY information gathered on those affected chronically/persistently.  You can also access direct information on the most effective treatments according to patients.  

If you want to skip to the latest info go to 15:20.  Johnson admits that the patient group is by and large those chronically affected.

For example, 60% who took the survey were diagnosed with a coinfection.

Why the CPI’s Article on How a Climate Skeptic is Holding up Tick-borne Illness Research is Dead Wrong

An article by The Center for Public Integrity,  https://www.publicintegrity.org/2018/08/06/21999/disease-bearing-ticks-head-north-weak-government-response-threatens-public-health states, “As Disease-bearing Ticks Head North, Weak Government Response Threatens Public Health.”

Now that’s something we can both agree upon.

What I completely and unequivocally disagree with is this statement:

 “The CDC says rising temperatures are partly to blame for the tripling of mosquito-, tick- and flea-borne illnesses from 2004 to 2016, but Maine’s governor, a climate skeptic, is tying health officials’ hands.”

This statement is called gunny-sacking which by definition means that rather than focusing on an important key point with basis in truth, you lump a bunch of unrelated issues together, some of which are true and some of which are unsubstantiated or even false, and whallop folks over the head, hoping they won’t notice inconsistencies.

“The climate change range expansion model has been used to rationalize how they have done nothing for more than thirty years.  It’s a huge cover-up scheme that goes back to the 1980’s.”  Scott says, “even the ticks are smarter than the people who have concocted this thing.”

Those are pretty bold statements coming from an infected tick expert.

BTW:  for those of you new to this crazy world, ticks have been found on beaches, in caves, underneath picnic benches, on rocks, on birds and other animals, blown into swimming pools, falling off trees, and I’ve found them climbing my walls:  https://madisonarealymesupportgroup.com/2018/06/07/where-ticks-are-and-what-they-carry-science-conversation-with-dr-cameron/,  https://madisonarealymesupportgroup.com/2017/07/13/tv-anchor-speaks-out-about-lyme-disease/.  I’m sure they’ve been found just about everywhere.  If you like Stephen King, here’s a goodie for bed-time reading:  https://madisonarealymesupportgroup.com/2017/07/30/ticks-found-on-eyeball-buttocks-and-penis/

If there’s one thing I’ve learned on this journey from hell it’s that those who are infected have a vested interest in getting down to the bottom of things.  They are more open minded, search harder, and do not blindly swallow past research.  They frankly, NEED answers for themselves.  It’s far more than just a job with a paycheck for them.  It’s also important to point out the obvious fact that being an independent researcher, Scott doesn’t answer to the people paying the bills.  So if “inconvenient” facts are discovered, he feels no pressure to hide the information.  I wish this could be said of others doing work in the Lyme/MSIDS area.

  • Fourth, and perhaps most importantly, the lumping together of Maine’s governor being a climate skeptic tying officials’ hands, is the worst gunny-sacking of all.  Let me be clear:  not swallowing the climate change propaganda does not mean you don’t care about controlling insects and lessening human suffering!  

Have we really devolved to infantile name-calling?

The real quote that says it all is:

“It’s disheartening for folks who work in climate and health. When politics come into play they feel beat down a little.”
—Chelsea Gridley-Smith, National Association of City and County Health Officials

OK, now we are getting somewhere.  Bottom line – someone feels put down.

Translation:  someone didn’t get some money – typically in the form of a grant.

And, if we are talking politics, they are clearly on the side of the climate changers.  It is used as a cat call for researchers seeking grant money despite inconclusive results.  The media, similarly to the vaccine issue, is clearly biased and promoting climate change.  Period.  Gone are the days where journalists just print the facts.  They now feel compelled to tell you how to think as well.

But, we have to ask ourselves, how is this article going to affect real research that needs to be done for Lyme/MSIDS patients?

For one, if a person takes this article at face value it will make you think that climate change research is what’s important and this “climate change skeptic” from Maine is stopping that from happening…when nothing could be further from the truth.

A tick experts claims they’ve been doing climate change research regarding ticks and Lyme for years and have ZIPPO to show for it.  Patients aren’t helped one iota.

Do we really need more climate change research or do we need more research on how to  properly test, treat, and help patients who have been suffering and have been ignored for over 40 years?  Of course we need to research how to stop ticks from transmitting disease but….

How is climate data going to help any of this?

You can show all the EM rashes you want.  You can quote disgruntled employees who feel “beat down a little,” you can state it’s all being hog-tied by a climate change skeptic, you can show maps of ticks marching North, and you can even show cute crayon-colored pictures by children, but some of us out here are on to you.  

In the end – it’s all about money.

What it isn’t about is patient care.

Let me be clear:  the federal government’s failing to prioritize Lyme/MSIDS research has NADDA to do with climate change.

Don’t be duped.  Don’t swallow the bait.  Think for yourself.

For a great read:  https://edberry.com/blog/climate-physics/agw-hypothesis/climate-change-emperors-have-no-clothes/?  “According to the scientific method, it is impossible to prove a theory is right. But climate alarmists ignore the scientific method and simply BELIEVE their theory is right. They don’t have time for any stinkin’ proof they are wrong.

This post is “stinkin’ proof” they are wrong. Yes, Virginia, it IS possible to prove a theory is wrong.”

And remember – above all – it’s important to question things and to seek out answers for yourself.  Often, the answers you find will fly in the face of accepted public opinion.

It’s your life.

Live it with conviction.

An Invasive New Tick is Spreading in the U.S.

https://www.nytimes.com/2018/08/06/health/asian-long-horned-tick.html?smid=fb-nytimes&smtyp=cur

An Invasive New Tick Is Spreading in the U.S.

By Donald G. McNeil Jr.
Aug. 6, 2018

For the first time in 50 years, a new tick species has arrived in the United States — one that in its Asian home range carries fearsome diseases.

The Asian long-horned tick, Haemaphysalis longicornis, is spreading rapidly along the Eastern Seaboard. It has been found in seven states and in the heavily populated suburbs of New York City.

At the moment, public health experts say they are concerned, but not alarmed.

Although domestic American ticks are a growing menace and transmit a dozen pathogens, no long-horned ticks here have yet been found with any human diseases. In Asia, however, the species carries a virus that kills 15 percent of its victims.

For now, the new arrivals are considered a greater threat to livestock.

Known in Australia as bush ticks and in New Zealand as cattle ticks, long-horned ticks can multiply rapidly and suck so much blood from a young animal that it dies. The ticks bloat up like fat raisins until their tiny legs are barely able to support them.
After a blood meal, females can lay hundreds of fertile eggs without mating.

“One tick can crank out females in fairly large numbers,” said Thomas Yuill, a retired pathobiologist at the University of Wisconsin, Madison, who was one of the first to raise alarms about the invaders.

The first long-horned tick was found last summer in western New Jersey. This summer they were collected in public parks and a golf course in Bergen, Essex and Middlesex counties in New Jersey, and in wooded and grassy areas of New York’s Westchester County.

They were reported in Pennsylvania for the first time last week, and have been sighted in Arkansas, North Carolina, Virginia and West Virginia.

They were found feeding on horses, dogs, deer, a calf, a sheep and an opossum. They do bite humans, but it is not clear how often.

People should use the same precautions they do against domestic ticks, experts said, such as using repellents and checking for ticks after walking through woods or tall grass.

Tadhgh Rainey, an entomologist at the public health department of Hunterdon County, N.J., found the first long-horned ticks in the country last August, when a woman who had been shearing her pet Icelandic sheep came to his department with ticks on her hands and wrists.

“I thought she’d have a few,” Mr. Rainey said in an interview. “But she was covered in them, easily over 1,000 on her pants alone.”

Most were young nymphs about the size of dust specks.

“She had a change of clothes in her car, so we put her clothes in the freezer to kill them,” Mr. Rainey recalled.

The ticks didn’t match any North American pests, and initially he could not identify them. The woman’s 12-year-old sheep was penned alone and had never traveled, so where they came from remained a mystery.

A month later the woman called again to see if he had figured out what they were, and Mr. Rainey drove out to see the animal for himself.

“A minute after we entered the paddock, even before I touched the sheep, I was covered in ticks,” he said.

The sheep was weak from blood loss, so he gave the owner some insecticidal livestock wash. The grass around the paddock was later cut and the area sprayed in an effort to eliminate the outbreak.

Andrea Egizi, an entomologist at Rutgers University, finally identified the longhorns by DNA analysis. Her lab has now tested more than 100 specimens found in New York and New Jersey.

Thus far, Dr. Egizi said, none have any of the pathogens causing the six diseases she screens for: Lyme disease, relapsing fever, babesiosis, anaplasmosis and two varieties of erlichiosis.

The Centers for Disease Control and Prevention lab in Fort Collins, Colo., has screened about 100 long-horned ticks for three dangerous viruses — Powassan, Heartland and Bourbon — and all came up negative, said Ben Beard, the agency’s deputy director of vector-borne diseases.

The lab now has 10 live long-horned ticks and is feeding them to create a colony, Dr. Beard said. That will take about a year, and then researchers can determine whether they can transmit Rocky Mountain spotted fever and other diseases.

In East Asia, long-horned ticks do carry pathogens related to Lyme and others found in North America. But the biggest threat is a phlebovirus that causes S.F.T.S., for severe fever with thrombocytopenia syndrome. (Thrombocytopenia means abnormally low levels of platelets, which help the blood clot; a severe drop triggers internal bleeding and organ failure.)

The syndrome has an overall fatality rate of about 15 percent, said Terry A. Klein, an entomologist working with the American military in South Korea. But S.F.T.S. is more lethal to people aged 60 or older, killing half of them.

However, the syndrome is not found in Australia or New Zealand, earlier stops for the long-horned ticks as they spread from Asia. In those countries, they cause babesiosis and theileriosis in cattle but are mostly “of nuisance value” to humans, said Dr. David Thomson, a veterinarian in Queensland, Australia.

It’s not clear that the S.F.T.S. virus, which is related to the Heartland virus found in a number of American states, could get established in this country, because its transmission cycle is unknown — it may need more than one host.

(Although West Nile virus, for example, is transmitted to humans by mosquitoes, they first get it from birds, because humans do not build up enough of the virus to pass on.)

It’s not known when or how long-horned ticks reached the United States, nor why the species is spreading so fast now.

They bite birds, but Mr. Rainey said he suspected they originally arrived on a large animal. As far back as 1960, he said, the ticks were found on a horse held in quarantine.

One collected in 2013, Dr. Beard said, was misidentified until recently as a rabbit tick, which is also in the Haemaphysalis genus.

In theory, just one female could have produced all the long-horned ticks spreading in the country through asexual reproduction. But Dr. Egizi said she has found three mitochondrial DNA lineages, meaning at least three females arrived.

Although experts said having a new invader is unsettling, they worry more about deer ticks, lone star ticks and other established species whose ranges are growing as winters get warmer.

Cases of the illnesses they transmit — everything from Lyme disease to alpha-gal syndrome, an allergy to red meat — are rapidly increasing. Even in Asia, only about 1 percent of long-horned ticks have the S.F.T.S. virus; in parts of this country, 25 percent of deer ticks carry Lyme disease.

“The jury’s still out on how big a threat this is,” Dr. Beard said. “But we think it’s a very important question to address.”

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**Comment**

Now in 5 states (Pennsylvania, Arkansas, North Carolina, Virginia and West Virginia) the Long-horned tick is responsible for SFTS in Asia.  It is also associated with spotted fever rickettsioses, Anaplasma, Ehrlichia, and Borrelia, the causative agent of Lyme Disease in other parts of the world.

Why they continue to downplay this is truly a head scratcher.  But then they’ve been downplaying all things tick related for decades.

https://madisonarealymesupportgroup.com/2018/03/07/tick-bites-tick-hyperparasitism/

If a picture’s worth 1,000 words look at this one:

Ixodes-angustus-hyperparasitism

A scanning electron micrograph shows an engorged female Ixodes angustus tick with a male I. angustus attached to its underside in typical feeding mode—a case of hyperparasitism presumed uncommon in the species. (Image originally published in Durden et al 2018, Journal of Medical Entomology)

NY Grants Approval of IGeneX’s Lyme ImmunoBlot Tests

https://www.businesswire.com/news/home/20180807005631/en/New-York-State-Grants-Approval-IGeneX’s-Newly

New York State Grants Approval of IGeneX’s Newly Developed Lyme ImmunoBlot Tests

Lyme ImmunoBlots (IgM and IgG) represents quantum leap in test performance over the traditional B. burgdorferi Western blots.

August 07, 2018 12:00 PM Eastern Daylight Time

PALO ALTO, Calif.–(BUSINESS WIRE)–The Division of Laboratories of the Department of Health of the State of New York has approved IGeneX’s newly developed Lyme ImmunoBlots (IgM and IgG), making it immediately available to New York practitioners.

Now, instead of sourcing test antigens from only one or two species of sonicated Borrelia, the ImmunoBlot is comprised of specific recombinant antigens from several species of Borrelia burgdorferi. The ImmunoBlot therefore detects the following US and European species of Lyme Borrelia: B. burgdorferi B31, B. burgdorferi 297, B. mayonii, B. spielmanii, B. californiensis, B. valaisiana, B. afzelii and B. garinii and makes the P31 epitope confirmation test unnecessary.

To test for all the above Borrelia burgdorferi species by Western blots, eight individual IgM and eight individual IgG tests are required. Performing 16 Western blots on each patient sample is expensive and impractical as opposed to just two tests with the Lyme ImmunoBlots.

“The Lyme ImmunoBlot is intentionally more inclusive for Borrelia burgdorferi sensu lato than the currently available Western blots because we now know that other species such as B. mayonii, B. californiensis and B. spielmanii all cause disease in the US,” said Dr. Jyotsna Shah, CEO of IGeneX. “With the increase of international travel in the last 10 years, people can get infected at home, other parts of the US or Europe depending on their lifestyle. Thus, it is important to have available a test that can detect the infection irrespective of where it was acquired.”

More Comprehensive Detection

The Lyme ImmunoBlot IgM detects the five following recombinant protein groups: P93, P41, P39, P31, and P23. Furthermore, the Lyme ImmunoBlot IgG detects these twelve recombinant protein groups: P93, P66, P58, P45, P41, P39, P34, P31, P30, P28, P23, and P18.

High Accuracy Across the Disease Spectrum

The accuracy of the Lyme ImmunoBlot has been established by exhaustive testing. The sensitivity with well-characterized samples has been shown to be greater than 93% whereas the two- tier testing recommended by CDC has a sensitivity of about 57.6% (Waddell LA et al. PLoS ONE. 2016;11(12):e0168613. doi:10.1371/journal.pone.0168613). Additionally, the ImmunoBlots detect the full spectrum of disease: early, active and late-stage disease. This high degree of sensitivity does not come at the cost of specificity. The specificity of the Lyme immunoblot is equivalent to CDC 2-tier testing (ELISA or IFA followed by Western blots).

New York State Department of Health Approval

The Clinical Laboratory Evaluation Program, Wadsworth Center, New York State Department of Health has approved the IGeneX Lyme ImmunoBlot (https://www.wadsworth.org/igenex-inc-reference-laboratory-12), making it available to all qualified New York practitioners and their patients. IGeneX works swiftly to ensure that this remarkable test can be utilized immediately.

The Wadsworth Center, a division of New York State Department of Health, is a science-based community committed to protecting and improving the health of New Yorkers through laboratory analysis, investigations, and research, as well as laboratory certification and educational programs. The Center serves a vital role in the New York State Department of Health’s efforts to protect and promote the health of New York’s citizens.

About IGeneX

For over 25 years, IGeneX has been at the forefront of research and development of diagnostic testing for Lyme disease, Relapsing Fever, and other tick-borne diseases. IGeneX arms its talented scientists with the most cutting-edge technology available to enable them in finding new solutions that challenge the status quo of testing for Lyme and associated tick-borne diseases. This team of experienced, hands-on experts develops these tests in-house using a wider spectrum of relevant proteins and strains that look for and detect more. The mission of IGeneX is to aid practitioners in their diagnosis of tick-borne illnesses by providing the most comprehensive testing possible. Learn more at: www. IGeneX.com

 

 

Dr. Jay Davidson – Video on Nematodes in the Eye

https://www.facebook.com/drjaydavidsondetox/videos/2157853841138452/  Video here Approx. 15 Min.

Parasites in the eyeballs and parasites from Rats!
https://www.cdc.gov/…/67/wr/mm6730a4.htm
https://amp.businessinsider.com/eye-wor…

The top link shows Dr. Jay Davidson talking about rat lungworm, hookworm, Strongyloides, and nematodes in the eye. Believe it or not, this particular eye parasite affects 12 million people worldwide.

He also gives a preview of a parasite symptom checklist.

For more on parasites:  https://madisonarealymesupportgroup.com/2017/10/03/removing-parasites-to-fix-lyme-chronic-illnesses-dr-jay-davidson/

https://madisonarealymesupportgroup.com/2018/08/01/risky-business-linking-t-gondii-entrepreneurship-behaviors/

https://madisonarealymesupportgroup.com/2016/05/21/toxoplasmosis/

https://madisonarealymesupportgroup.com/2018/08/01/cyclosporiasis-update-for-wisconsin/

https://madisonarealymesupportgroup.com/2016/06/03/borrelia-hiding-in-worms-causing-chronic-brain-diseases/

https://madisonarealymesupportgroup.com/2018/02/12/wolbachia-laced-mosquitoes-being-released-why-lyme-msids-patients-might-be-negatively-affected/