Archive for the ‘Activism’ Category

Digging Deep – Mobile Game for Chronically Ill Teens

https://diggingdeep.org/resources/  Digging Deep Mobile Game

We are creating a mobile game to help teens facing serious or chronic health issues and we need your help! Are you interested?

You will receive online surveys every two weeks. Answering will take about 20 minutes and you will receive a voucher for $15 US.

What we need from you: You email address, your full name, your birthday and the town you live in.

What we need from your parents: A signed permission form.

To sign up, please send info and permission to Kevyn Eva Norton at kevyneva@diggingdeep.org

We’ll send email updates with glimpses of ‘the making of the game’ so you’ll know how we use your feedback along the way!

A Canadian’s Lyme Story

https://www.cheknews.ca/new-strain-lyme-disease-vancouver-island-298425/

The link above tells the story of Nicole Bottles, a 24 year old in a wheelchair since age 15.  The Canadian finally traveled to the United States to get an accurate diagnosis of Lyme Disease but suffers with chronic pain.  This hasn’t stopped Bottles from playing the piano, beautifully.  Listen by clicking on link.

The news story also tells of the new strain of borrelia called Borrelia Genomospecies 2 found in Ixodes spinipalpis ticks collected from a Rabbit in Canada: https://madisonarealymesupportgroup.com/2017/03/15/novel-borrelia-found-in-canadian-rabbit/

Bottles is using her story to raise awareness – particularly since Lyme Disease, if treated early, is preventable.  She started this petition https://petitions.parl.gc.ca/en/Petition/Details?Petition=e-903 to the Canadian Parliament to rewrite the Lyme Disease Framework to include patients, advocates, and other stake holders.  She has also written this petition as well https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now asking for the rejection of the current Lyme Framework.

 

Help Lisa Torrey – Dedicated Lyme Advocate

https://www.gofundme.com/please-save-our-mothers-life

Please Save Our Mother’s Life

(Written by Lisa’s Children, Sydney and Casey Torrey)

Our mom was diagnosed in December 2016, with a rare autoimmune disorder called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Our mom has nerve damage, muscle weakness in her legs and arms, and lives with a high level of pain every day. CIDP has weakened her diaphragm and it is progressively getting worse. She has reached the point where she must be on oxygen at night and now often during the day. The oxygen is a short-term treatment, because it can’t make up for a diaphragm that continues to weaken. She grows weaker every day and was told by her specialists if she does not receive IV Immunoglobulin (IVIG) very soon, she will die.

She describes her inability to breath well as feeling like she is slowly suffocating…she’s short of breath and breathes very shallow. She does not get enough oxygen so she gets daily headaches and is extremely tired. Her voice cracks from not enough air…she stutters on her words and has slurred speech from not enough oxygen. Her legs are so progressively weakening that she will need a wheelchair soon.

Years of very expensive treatment and insurance denials since 2002 for chronic Lyme disease, and having to travel out of state to see specialists, have drained our parent’s life savings and retirement. They sold their home to use the equity to pay off mounting medical bills. In 2015 and 2016, my mom was diagnosed with a connective tissue disorder, Ehlers Danlos Syndrome(EDS), mast cell activation disorder (MCAD) and dysautonomia. Our parents have spent $110,000 in the last 5 years for out of pocket medical expenses. We have an extremely high deductible and benefits do not cover all that my mom requires. Our parents are in debt again.

If this wasn’t bad enough, our dad and his senior team of management lost their jobs on Jan 12th. There is two weeks of severance to be paid. Our dad’s unemployment will not cover the living expenses, COBRA premiums plus co-pays, and there is very little in their savings. Our COBRA is expected to be over $2000 dollars a month. The IVIG is often denied for several months while insurance reviews for the approval, and it costs $10,000 per infusion for adults. She was told initially she will need the IVIG infusions weekly. Our mom does not have months to wait for our dad to find new employment with benefits and for COBRA insurance approval to pay for the IVIG. She needs this life saving treatment now.

My brother Casey and I need to raise $196,000 for our mom, for 6 months of expenses. It will pay for the following:

· IVIG treatment while waiting for insurance approval and copays

· Medical bill debts already incurred

· COBRA premiums

· Travel expenses to see her specialists

· To pay for household bills and rent until our dad finds employment, which should take 3-6 months

Our mom wakes up every day prepared to help others through her non-profit work, for people with vector-borne infections. She always puts the needs of our family and patients first. Her dedication and compassion for suffering patients with chronic infections, like Chronic Lyme disease (CLD), gives her the mental energy to work when physically she is weak. We love our mom so much! Please give what you can for our mom’s lifesaving treatment and medical bills.

GLA Raises Nearly 800K for Tick-Borne Disease Research

https://globallymealliance.org/press-releases/global-lyme-alliance-gala-raises-nearly-800k-lyme-tick-borne-disease-research/

Greenwich, Conn (April 5, 2017)—Global Lyme Alliance (GLA), the leading Lyme and tick-borne disease nonprofit dedicated to conquering Lyme through research and education, announced today that its Greenwich Gala, held Saturday, April 1 at the Hyatt Regency Greenwich, raised nearly $800,000 to fund research and ultimately a cure for Lyme and other tick-borne illnesses.

“Huge thanks to all those who made the Gala such a wonderful success—our special guests, honorees, co-chairs, as well as the many generous donors who invested their time and funds in the fight against tick-borne disease,” said Scott Santarella, GLA’s CEO.

Podcast: Lyme Disease and Tick-Borne Co-infections

https://globallymealliance.org/podcast-lyme-disease-tick-borne-co-infections/

PODCAST: LYME DISEASE AND TICK-BORNE CO-INFECTIONS
January 17, 2017

The most common tick-borne infection is Lyme disease. However, infected ticks also carry and spread numerous co-infections.

The newest Global Lyme Alliance podcast, with GLA’s Dr. Harriet Kotsoris and Dr. Mayla Hsu, discusses Lyme disease and the co-infections that are often transmitted along with the initial tick bite. Below is an excerpt.  https://soundcloud.com/user-988784721/lyme-disease-and-tick-borne-co-infections  (Click on this link for the entire podcast or you can fast forward to 13:15 and it will pick up at Bartonella which is where the transcript stops below.  It also goes into viruses and STARI).

Host: In this podcast we’re going to expand our discussion to include co-infecting tick-borne diseases that are often transmitted along with Lyme. I’m in our studio with Dr. Harriet Kotsoris and Dr. Mayla Hsu who are science and research officers at the Global Lyme Alliance. I’ll start off by asking, what is a tick-borne infection?
Dr. Harriet Kotsoris: A tick-borne infection is an infectious disease spread by the bite of an infected tick. The most common is Lyme disease but many others are present in the same tick bite. Depending on the location and the season, up to half of all ticks may have had more than one kind of microbe or disease producing organism that can make humans very sick. The list of microbes is expanding up to 11 or 12 at last count, but we’ll focus today on the major ones. These are called co-infections, the simultaneous infection of a host by multiple pathogenic or disease producing organisms.
There is an increasing number of ticks that are multiply infected as we just said. In a recent west European study of Ixodes ricinus ticks, very similar to the American black legged deer tick, up to 45% of those ticks were co-infected with up to five pathogens or disease producing organisms. We have a similar experience here in the United States.
Host: How many people get tick-borne infections?
Dr. Kotsoris: The Centers for Disease Control calculates about 330,000 Lyme disease cases per year but it may be even over 400,000. It’s not really understood how many of these are also infected with other microbes, which in some cases cause different illnesses that require different diagnostic tests and different treatments.
Host: What can you tell us about the ticks that spread these diseases?
Dr. Mayla Hsu: Well in the United States there are different families of ticks that may be co-infected with various pathogens. As Harriet just mentioned, the Ixodes ticks or the black-legged ticks are now in half of all United States counties. There’s another tick that is further south, known as the Lone Star and there is also an American dog tick called Dermacentor that also harbors infectious microbes.
Host: How about internationally?
Dr. Hsu: Well it seems that ticks are generally found in all temperate climate zones, so there are the Ixodes species in North America, these are also found in Europe and Asia, there are other ticks found in Africa, parts of temperate Africa, that infect humans as well as animals there, and they’re responsible for causing relapsing fevers. There are soft ticks, Ornithodoros, the Ornithodoros family of ticks, that are found in South America and Western Africa, and these too are associated with causing diseases in humans. The jury is still out in Australia. There are ticks there but it’s not known whether or not they’re correlating with human disease.
Host: What do we know about changing tick geography?
Dr. Kotsoris: It seems that in the United States, the geographic range where ticks are found is expanding and we know that with climate change the range is also changing, so for instance, it is expanding northwards into Canada where Lyme disease was never a concern, it now is starting to emerge. We can expect and see more tick-borne diseases elsewhere, also spreading in through the United States. These are now classified as emerging infections and so public health authorities are very concerned about this and tracking the emergence of more tick-borne illnesses.
Host: What are some of the emerging tick-borne diseases and again we’re going to focus only on the major ones about which the most is known.
Dr. Hsu: One of the more interesting tick-borne illnesses that has been emerging in recent years is called babesiosis. This is an illness caused by a parasite that’s very similar to malaria. It’s called Babesia, Babesia microti. This is characterized by recurrent fevers, so people get fevers that spike and then go away and then come back over and over again, chills, muscle and joint aches and pains and it can be actually fatal in rare cases. The diagnostic test for this is not a blood test looking for antibodies, rather the blood is examined under a microscope and here you can see the organism actually growing in red blood cells, so just like malaria it grows in red blood cells and you can see it in a blood smear and the treatment required for this is also very similar to anti-malaria therapies, so that’s drugs that are similar to quinine but also anti-protozoan drugs like Atovaquone, also known as Mepron, and antibiotics, azithromycin and clindamycin.
About 1,800 people were reported to have gotten babesiosis in the year 2013, and the numbers are rising so where we see Lyme disease we are also starting to see more and more Babesia, and it’s important to point out that the treatment and diagnostic for Babesia is different from that of Lyme disease, so if Lyme disease is suspected and is looked for, and treated, a person who also has Babesia will not get adequately diagnosed or treated and can continue to be ill.
Host: There are several bacterial diseases that are spread by ticks that have been getting more attention in recent years, Anaplasma and Ehrlichia.
Dr. Kotsoris: Yes, historically these started out as veterinary diseases. They were identified in the late 80s and early 1990s, after having been studied as long-standing veterinary problems. These organisms belong to a group known as the Rickettsiae, Anaplasma, Ehrlichia, and Rickettsia itself. These are what we call obligate intracellular parasites. They’re bacteria that only live inside the cells of another organism, and that’s how they affect humans. Human granulocytic anaplasmosis is what we call a gram-negative bacterium of the rickettsia family. It invades white blood cells after a tick bite by an infected tick and it travels and lodges within granulocytes or the neutophils, the white blood cells of the human being.
About one to two weeks after the bite, the patient will develop spiking fevers, headache, drop in white blood count, drop in platelet count…the platelets are responsible for clotting blood, and a rise of liver function tests indicative of an inflammation of the liver. These organisms are very smart and release a chemical substance known as a chemokine, or a cytokine, interleukin-8 that actually is an attracting chemical for white blood cells to help propagate the infection throughout the body. The diagnosis has to be made by blood smear because the comparison of acute and convalescent sera that is the development of convalescent antibodies may be too late in the game, that the patient will have been compromised medically and treatment will have been delayed. The diagnosis can also be made by something known as polymerase chain reaction and the treatment is doxycycline, 100 milligrams twice a day, similar to what’s used in acute Lyme disease and the treatment is until three days after the disappearance of the fever.
Related is something known as human monocytic ehrlichiosis. Ehrlichia and Anaplasma were used interchangeably in the past, but now they’ve been divided into separate categories because of the bacterial composition. Human granulocytic anaplasmosis is carried by the black legged deer tick, Ixodes scapularis, Ixodes pacificus on the west coast, but this vector for human monocytic ehrlichiosis is the Lone star tick, or Amblyomma americanum and Dermacentor variabilis, the American dog tick. The classic infection in the Midwest in particular is by Ehrlichia chaffeensis and Ehrlichia ewingii, more so chaffeensis. Usually peaking in July, usually affecting males older than 50 years old, and again, within a few weeks of the tick bite, the patient develops headaches, muscle aches, otherwise known as myalgias, fatigue, a drop in white blood count, a drop in platelet count, fever, gastrointestinal systems, which may lead to also respiratory insufficiency and kidney failure.
The three states most affected by Ehrlichia chaffeensis and ewingii are Oklahoma, Missouri, and Arkansas. They account for 30% of the reported cases of these bacterial species. The numbers have been reported in the low thousands over the last few years. In 2009, a third cause of human ehrlichiosis was identified in the upper Midwest. This has been known as Ehrlichia muris-like agent. Interestingly, it also exists in Eastern Europe and Asia. The detection of this pathogen or disease producing organism is by looking for the DNA, that is the genetic material, of this organism in the blood of patients. About 2.5% of Ixodes scapularis ticks are infected by this E. muris type agent. Note that this one is spread by Ixodes scapularis, the black legged deer tick, not the Lone Star tick as in human monocytic ehrlichiosis.
One of the better known bacterial infections that people read about, hear about, especially with people traveling into the Rocky Mountain area, into the Midwest, into the Southeast, is something known as Rocky Mountain Spotted Fever. This is Rickettsia rickettsia…it is spread by the American dog tick, by the Rocky Mountain wood tick, and by the brown dog tick. There are reported 14 cases per million population, peaking in April through September. Despite its name, as I said before, it’s not confined to the Rocky Mountains, it’s also found in the southeastern United States. These bacteria, after the tick bite, travel within the blood stream and lodge within endothelial cells, that’s the lining cells of small blood vessels, and elicit inflammatory changes and make the blood vessels leaky, affecting all organs infected, especially the skin and the adrenal glands. The platelets responsible for clotting are consumed and you may have kidney malfunctioning.
Patient will present with severe headaches, high fevers, a few days after the bite and a few days after that, a spotted rash on the wrists, palms, and ankles. Patient may also have abdominal pain, nausea, vomiting, and other generalized symptoms. The mortality rate can be as high as 4% and this is caused by a delay in diagnosis and treatment. The treatment is doxycycline and patients do best, and have a much lower morbidity and mortality if they’re treated within five days of being infected.
Below is the full podcast with Dr. Kotsoris and Dr. Hsu. They continue their overview of Lyme and co-infections, specifically Bartonella and the Powassan virus.

Follow Global Lyme Alliance on SoundCloud to hear future podcasts.