Archive for the ‘Activism’ Category

H.R. 4333 – Lyme Disease Research Stamp Act

For Immediate Release Contact: John Lange
Thursday, November 9, 2017 202-225-5614 | John.Lange@mail.house.gov

Faso Introduces Bipartisan Legislation to Raise Awareness and Research Funding to Combat Lyme Disease

Washington, D.C. – Congressman John Faso (R-Kinderhook) today announced the introduction of H.R. 4333, the bipartisan “Lyme Disease Research Stamp Act” alongside Congressman Collin Peterson (D-MN). The legislation would establish a United States Postal Service semipostal stamp to raise money for Lyme disease and related tick-borne illness research – at no cost to taxpayers.

Congressman Faso said, “Lyme Disease is a scourge that Upstate families know all too well. This debilitating disease stays with its victims for years, and results in immense emotional and financial hardship. Lyme disease and related tick-borne illnesses are growing rapidly, and it is critically important that as a society we do what we can to educate the public on this epidemic so our communities and families can take the necessary steps to comprehensively address this issue.” Faso continued, “The Lyme Disease Research Stamp Act is important because it will help raise awareness and money to support comprehensive research efforts to combat and prevent these devastating diseases.”

Congressman Collin Peterson (MN-7) added, “I am proud to help lead the effort to support increasing funding for Lyme disease and tick-borne illness research and raise public awareness,” Peterson said.

The Lyme Disease Research Stamp Act would establish a United States Postal Service semipostal stamp to raise money for Lyme disease and related tick-borne illness research. The stamp would operate as USPS first-class postage, which postal patrons may voluntarily purchase at a price slightly higher than regular postage to support this cause. Revenue raised would directly benefit critical Lyme disease and related tick-borne illness research at the National Institute of Allergy and Infectious Diseases (NIAID). This market-driven initiative comes at no cost to the taxpayers.

Other leaders in the fight against Lyme Disease contributed their thoughts on the Faso legislation:

“Lyme disease is the number one spreading vector borne epidemic in the U.S, and mimics other chronic diseases accounting for an increased burden of those suffering with chronic illness. It has now been reported in all 50 states, affecting more than 330,000 people a year with debilitating symptoms. Lack of accurate diagnostic testing oftentimes results in diagnoses of Chronic Fatigue Syndrome, Fibromyalgia, autoimmune diseases, unexplained pain syndromes, as well as dementia with neuropsychiatric illness. These various manifestations contribute to disability and rising health care costs. We desperately need to improve diagnostic and treatment options for Lyme and associated illnesses, as research funding to date has been inadequate, so the “Lyme Disease Research Stamp Act” is an excellent way to help raise awareness and provide critical funding for this emerging epidemic”

Dr. Richard Horowitz
NY Times Best-selling author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” and national best-selling author of “How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease”
“The Lyme Disease Research Stamp Act introduced by Congressman Faso enables Congress to provide an opportunity to raise much needed funds for Lyme and other tick-borne diseases research, yet it does not add to the financial burden of the federal government. It enables individuals who want to support Lyme research–so that patients can get proper diagnosis and treatment–to do so without a strain on their budgets and without an unnecessary expenditure of time. Buy a Lyme stamp, help save a life! It’s a win-win situation.”

Pat Smith
President, Lyme Disease Association, Inc.

“Great thanks to Congressman Faso for finding this unique manner to assist with NIH Funding for Lyme disease research. There’s about 80 times as much tick-borne disease as mosquito-borne disease in the USA. Yet funding for Lyme and tick-borne diseases is not commensurate with the illnesses. This legislation will help NIH to address the ticks and the diseases they transmit as is done with mosquitoes.”

Jill Auerbach
Hudson Valley Lyme Disease Association, Chairperson

“We are gratified that Congressman Faso has sought to arrange for a direct way of funding future research for tick borne disease. This epidemic has taken a back seat to mosquito diseases and this legislation will provide a necessary amount of awareness as well as some additional funding. We are grateful to Congressman Faso for his efforts in this area.”

Ira Auerbach
Hudson Valley Lyme Disease Association

“Despite the severity of the epidemic and a rapid growth in reported cases, NIH funding for Lyme disease research has remained relatively low, averaging just $25 million annually. Additional funding is desperately needed for research to develop accurate tests that work in all stages of the disease and for clinical trials to develop more effective treatments for patients with chronic Lyme disease. The Lyme Disease Research Stamp provides an opportunity to help fill this gap at no expense to taxpayers.”

Bruce Fries
President, Patient Centered Care Advocacy Group

Some of Congressman Faso’s efforts to combat Lyme disease in the 115th Congress:

Sent a bipartisan letter to Acting Secretary of the Department of Health and Human Services, Eric Hargan, to follow up on report language for Fiscal Year 2018 appropriations regarding Lyme disease, to improve the measurement and tracking of the progress of federal efforts to combat the disease.
Member of the House Lyme Disease Caucus.
Voted for millions in Lyme and vector-borne disease research funding, in addition to voting for a $2 billion increase in funding to the National Institutes of Health, which conducts important Lyme research.
Sent a letter to U.S. Department of Health and Human Services Secretary Tom Price urging support for the Tick-borne Disease Working Group established under the 21stCentury Cures Act.
Met with leading medical professionals and Lyme disease prevention advocates to share information about ongoing Lyme research and education programs, as well as how private companies are working to develop vaccines.
Facts about Lyme Disease:

An estimated more than 300,000 new cases of Lyme occur annually.
It is found in half of all U.S. counties and on four continents, and it is growing rapidly.
It is transmitted by tick bites.
Symptoms may begin as flu-like but can affect the nervous system, leading to paralysis, encephalitis, seizures, and death if left untreated.
It has no known cure and is difficult to diagnose.
More than 3,000 confirmed cases in NY in 2015.
14 States, including New York, account for over 96% of reported cases.
To view the Letter to Acting Secretary of the Department of Health and Human Services, Eric Hargan, click here.
To learn more about this legislation, click here: https://faso.house.gov/uploadedfiles/lyme_disease_research_stamp_page.pdf
For the full text of the legislation, click here:  https://faso.house.gov/uploadedfiles/draft_-_lyme_disease_research_stamp.pdf

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**Comment**

Sigh……why do Lyme/MSIDS patients, their doctors, and researchers have to sell lemonade to raise money for a disease that’s affecting at least 300,000 per annum and thousands more who are chronically debilitated till they die?  https://www.cdc.gov/lyme/stats/humancases.html

Think about this for a minute.

Can you imagine breast cancer or heart disease patients needing to buy expensive stamps so they can have money for research?

I mean, don’t get me wrong, I appreciate the out of the box thinking by Representative Faso; however, patients are already paying exorbitant amounts of money for treatment that insurance will not even cover.  Then there’s the patients who have become homeless, those who forego treatment, and families who have to choose who gets treated in their family as they can’t afford to treat everyone.  I could go on and on.

According to the CDC, here’s the stats for the leading causes of death in the U.S. with corresponding links showing how LD can cause or exacerbate each of these conditions:

And while I couldn’t find a direct article link to Lyme/MSIDS and “accidents,” Lyme/MSIDS patients trip, fall, and have all sorts of accidents due to neuropathy and brain processing issues, it’s just nobody’s keeping score:  http://www.mentalhealthandillness.com/tnaold.html

According to the CDC, EVERYONE is at risk for Lyme and more folks are diagnosed with Lyme disease (329,000) each year than breast cancer (232,570), colon cancer (136,830), HIV (50,000), and Hepatitis C (18,000).

Take a peek at dollars spent on research:

HIV  $3,005

Breast Cancer  $674

Colon Cancer  $288

Hepatitis  $200

Lyme Disease  $21

*Dollars in millions and rounded. Estimated funding in 2014 by National Institutes of Health (NIH).  https://globallymealliance.org/about-lyme/, Fed funding:  https://report.nih.gov/categorical_spending.aspx

Lyme Disease occurs 6 times more often annually than HIV/AIDS, yet it receives less than 1% of the funding from the National Institutes of Health compared to HIV/AIDS. Likewise, there are 141 times as many cases of Lyme Disease than West Nile virus, yet Lyme Disease receives less than half of the funding for research. http://lymediseasechallenge.org/learn-lyme-disease/

Then there’s the 1.1 billion approved for Zika.

347 symptomatic Zika virus disease cases reported, but 342 cases were in travelers returning from affected areas
2 cases acquired through presumed local mosquito-borne transmission in Florida (N=1) and Texas (N=1)
3 cases acquired through sexual transmission  https://www.cdc.gov/zika/reporting/2017-case-counts.html

Mosquito experts have gone on record stating that mosquito transmission cycles for Zika in the U.S. is near ZERO.  https://madisonarealymesupportgroup.com/2016/07/17/zika-in-the-land-of-oz/, and https://madisonarealymesupportgroup.com/2016/09/04/cdc-report-on-zika/.

But, what about microcephally?

U.N. numbers show just 142 cases of birth defects linked to Zika outside Brazil. The article admits that the condition was initially over diagnosed.  https://madisonarealymesupportgroup.com/2016/10/26/zika-puzzling-scientists/

Call me crazy, but perhaps some reorganization within the CDC/NIH/IDSA needs to happen with proper emphasis on research spending that correlates to incidence of disease…..

Just a silly thought.

 

 

Category:

Activism, Alzheimer's, Lyme, research

Ally Hilfiger & GLA Chairman on Cheddar TV

Biting Back at the “Invisible Disease”   October 12, 2017  Cheddar TV

Global Lyme Alliance (GLA) Chairman Rob Kobre and GLA board member Ally Hilfiger sit down with Cheddar TV to discuss the threat of Lyme disease and GLA’s plan to conquer Lyme and other tick-borne diseases through research, education and awareness.

GLA raised over $9 Million to Lyme and TBI research.

Category:

Activism, Lyme, research

Marisol Thomas – Speech at Global Lyme Alliance

https://globallymealliance.org/marisol-thomas-existing-with-late-state-neurological-lyme-disease/?utm_source=Newsletter&utm_medium=email&utm_campaign=Newsletter_20171109&utm_content=GLA%20Blog_Marisol%20Thomas

marisol thomas
OCTOBER 23, 2017

MARISOL THOMAS: EXISTING WITH LATE-STATE NEUROLOGICAL LYME DISEASE 

Below is Marisol Thomas’ Honoree speech given at the 2017 Global Lyme Alliance New York Gala on October 11, 2017

When the Global Lyme Alliance reached out to me to say they wanted to honor me, my first instinct was to say no.  Actually, my first instinct was to run and hide.

I’m not the usual success story that you hear about in these speeches.  I’m not at the end of my long journey.  I’m deeply in the midst of it. To be completely honest, I’m in pain right now, and I was actually so worried that I wouldn’t physically be able to make it here tonight.

I don’t like to lie. And when I was approached to be honored, I feared that by accepting it and standing up here in front of you all, it would be just that. A lie.

Even after I agreed to be a part of this amazing evening, I had second thoughts every day. I kept thinking that if everyone could see me on the days and days that I spend in debilitating pain unable to get out of bed, they would realize that I shouldn’t be here.

Thomas

Then, just after my husband and family had convinced me to do some interviews to talk about what I’ve gone through, things shifted. I started to hear from other voices.

Voices that sounded like me. Some who have been in this same struggle, fighting to hold on just one more day. Some that have lived in pain for so long, having no idea what’s happening to them, that they start to believe maybe they’re going crazy. People who have spent decades going to the best specialists around the world and still have no answers.

These people started to reach out to me, thanking me for sharing my ugly story because it either helped them finally start to look in the right direction or just to simply say that it felt good to know that they weren’t crazy and they weren’t alone.

I have late stage Neurological Lyme Borreliosis, Babesiosis, Bartonella, and a host of other coinfections. To make things even more challenging, I also have Hashimotos Thyroiditis, an autoimmune disease that was triggered by the Lyme infection, when it unbalanced my immune system sufficiently to trigger the autoimmune mechanism.

Living with these multiple diseases has quite literally stolen my life. I went from being a happy and fulfilled person to just existing. There isn’t a day or even a moment where I’m not in pain. Many days so excruciating that I lose track of the hours that have passed.

On the days where people see me out and about with a smile, they don’t realize that I’ve just learned to function at a level of pain that most people couldn’t imagine. Each day is about surviving somehow.

My Mom’s daily mantra and mine has become JSS. Just Survive Somehow. This disease has affected my family and all my relationships in such a huge way that it pains me to even talk about it.

As someone with late-stage neurological tick-borne disease, I have joined a club of people with a stigmatized illness.  One that many don’t understand or want to believe. And that many doctors don’t even want to treat.

Having this disease feels like Groundhog Day in constant pain. It feels like you’re standing still just existing, unable to participate, as the world continues without you.

It is extremely isolating and you feel completely alone, as no one, not even the people who love you most, can understand the pain you live in every minute of your life.

So sadly many times, along with struggling to survive, you also feel the need to defend yourself daily. Desperately hoping to be believed.

The heartbreaking truth is that you will lose people on this journey. Some who can’t believe that anyone can be that sick with so many different symptoms for so long. Some who just get tired of you canceling plans at the last minute. And some that just can’t understand why you don’t get dressed, go out and get over it.

The sad reality is that when people don’t understand something, most of the time they don’t believe it. Nobody can really understand unless they have gone through it.

Those who stay, who really love you, who really want to help and try hard to understand your situation, still can’t grasp what you’re feeling, and many days you’re left feeling isolated and lonely in spite of all their efforts.

This leaves us feeling a tremendous amount of guilt. I feel guilty for being sick. For letting the people I love so much down time after time.

I have no control over it, and it’s not my fault, and yet it crushes me. Because I know my illness affects everyone around me.

As grim as my current situation is, I am one of the lucky ones. I have doctors who are willing to provide open-ended treatment and stand by me, no matter how long or how many twists and turns this journey takes me on.

And I’m also blessed to have a great support system.

I have a core group of wonderful people that have literally saved my life. Even though they probably don’t really know it.

My closest friends, don’t realize that just by sending me a text letting me know they are thinking of me, and are there for me, can brighten my day even when I’m unable to respond.

Getting weekly pictures and videos of my beautiful nephew Gavin, who I don’t get to see as often I want, helps me still feel a part of his life.

My Mom and Dad who have sacrificed so much in their lives to make sure I got all the opportunities they never had. And now continue to sacrifice trips and dinners, just to make sure they are always here for me.

My dogs…my boys…which, if you know me, are my world.

Whose unconditional love, give me a reason to get out of bed some mornings.

Marisol’s husband Rob Thomas performing with Chris Daughtry

 

 

 

 

 

 

 

And last but certainly not least, my husband, who is not only my best friend, but also literally my other half. No one will ever understand how much he has sacrificed in order to be with me all these years.

They have no idea that moments before he goes on stage in front of 15,000 people, that he was just on our bus, administering some medical therapy on me, that he learned and perfected better than most nurses I’ve ever met. Only to go and finish his show, jump off the stage, and come right back to help take care of me and our boys, who as luck would have it, are special needs as well.

His fans think he’s a wonderful person and they’re right. They just don’t know how right they are.

But I know that many people out there are not as blessed as I am to have this kind of love and support.

They are suffering in silence with nowhere and no one to turn to. I have cried learning how many suicides occur due to how unbearable life becomes for some and having no one believe them. They just want relief from their pain, and for someone to believe their story.  This is all any of us want.

So after struggling so much with accepting this honor, it is for all those people out there suffering and feeling alone and isolated, that I decided I must not only keep fighting, but also help bring awareness to this very real, very life threatening disease that is so stigmatized and misunderstood.

Connecting with fellow Lyme warrior Yolanda Hadid

It was my own feeling of isolation that led me to Yolanda’s book. I used to love to read so much. I was always buried in a book. But for the longest time it has physically hurt me to try to focus on the words on a page due to my visual disturbances, and sadly I just slowly stopped reading.

But I found a way to read her book from cover to cover. There was a sad irony in reading about someone else’s struggle while the simple act of reading itself put me in excruciating pain, but seeing someone else’s pain mirroring mine helped me to focus. And it was the first book I was able to read in over two years.

That’s when I realized what the word ALLIANCE in GLOBAL LYME ALLIANCE truly stood for.

For those of us who live with this disease that makes us feel so alone and isolated, to find a group of people who feel exactly the same way and still find a way to get up every day to continue to fight to get to other side, somehow gives you strength.

Sometimes having an alliance to support you is the difference between those of us that make it and the far too many who don’t.

So while I don’t feel much like someone who should be honored here tonight, I do feel that it’s an honor to be a part of this amazing alliance that is fighting tirelessly to give us a voice and help find a cure. So that others won’t ever have to suffer this way again.

So thank you for allowing me to be a part of something so much greater.

Watch Marisol’s Speech

Marisol’s speech moved the more than 700 people in attendance at GLA’s 2017 New York Gala–both patients and non-patients. For patients, they identified with Marisol’s moving and heartfelt words. For non-patients, they got a very real glimpse into living with Lyme disease, including dismissal by doctors, the daily struggle to exist, and the impact it takes on the patient’s circle of family and friends. Special thanks to Marisol Thomas for giving permission to Global Lyme Alliance to reprint her speech from GLA’s 2017 New York Gala. Mari, we honor and thank you.

Category:

Activism, Lyme

House Making You Sick? Mold & Lyme/MSIDS

Patients with Lyme/MSIDS are often sensitive to many things and have to remove them before they begin to heal.  Mold is one such item on the often long list.

My own personal experience with a reaction to mold happened pre-Lyme/MSIDS, thankfully, so I was aware of how devastating it can be for many people.  I was sick a lot.  Finally, we discovered mold and moved but the next place had it as well.  Once I got out of the moldy environment my body no longer was susceptible to every little illness.  I couldn’t believe the difference.

Published on Oct 27, 2017

Why You Should Listen:
In this episode, you will learn about illness resulting from water-damaged buildings and the importance of the environment on our health.
About My Guest: My guest for this episode is Andrea Fabry. Andrea Fabry is a former journalist, a radio host, and the mother of nine children. Her road to awareness began in 2008 when a serious toxic mold exposure compromised her entire family’s health. She is the Founder and President of momsaware.org. momsAWARE’s mission is to provide practical assistance to families and individuals displaced by toxic mold, and to raise public awareness of the negative impact of toxic mold, chemicals, pesticides, and other environmental hazards on human health. Andrea is certified in the field of Building Biology and is passionate about the overuse of chemicals, the disregard for indoor environmental issues, and the proliferation of electromagnetic radiation. Her story is available on her blog “It Takes Time” at it-takes-time.com. She currently resides in Vail, AZ, with her husband, Chris, and four of their children. She authored the book “Is Your House Making You Sick: A Beginner’s Guide to Toxic Mold” which is available on Amazon.com.
Key Takeaways: – How was Andrea’s family impacted by illness resulting from water-damaged buildings? – What factors lead to the growth of mold in an indoor environment? – What options may be helpful for testing for the potential of mold in the environment? – When mold is visible, how should it be cleaned? – What should one look for to find a good inspector and/or remediator? – When should one consider moving as opposed to remediation? – Might ozone or fogging solutions be helpful? – What should not be taken with you from a moldy environment to a new environment to minimize cross-contamination? – What treatment options were helpful? – Is it possible that the exposure to environmental mold leads to a colonization within the body? – Why is it important to reduce our exposure to EMFs to optimize wellness? – What are the top ten things Andrea learned the hard way?
Connect With My Guest: http://www.momsaware.org http://it-takes-time.com http://www.justso.co Related Resources: Is Your House Making You Sick? A Beginner’s
Guide to Toxic Mold – http://amzn.to/2gIQnoe
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Why you should not use bleach to clean up mold.  What air filters she recommends.  Her four step approach to healing.  What other infections and chemical exposures she looks for.  What natural and pharmaceutical medications she uses.  How to test to see if you have mold and the genes that make you susceptible.
**Comment**
Make sure to replace your pillows periodically.  They can harbor mold.

 

Category:

Activism, Detoxing, Lyme, Mold, Treatment

Tonight – Ask Dr. Rawls

Join Dr. Bill Rawls for a live webinar tonight,​ Wednesday, November 8th from 8-9pm EST for a special live Q&A webinar about Lyme disease. You’ve got questions, Dr. Rawls has answers.

Dr. Bill Rawls will cover many NEW common and uncommon questions about Lyme disease, including:
What are the risks and benefits of silver treatments?
Are CD57 levels useful in gauging Lyme?
Is a negative blood test sufficient indication of Lyme recovery?
How should one approach neurological aspects of Lyme?
How does one deal with coinfections?
What’s the most successful treatment for Chronic Lyme disease?
Why aren’t most physicians more educated about Lyme?
Plus more questions from the live audience
Bring all of your questions – nothing is off limits!

Bonus: There will be a special offer at the end, so make sure to stay until all questions are answered.

P.S. If you have any questions about the webinar, call us at 800-951-2414.

Category:

Activism, Lyme