Archive for the ‘Uncategorized’ Category

Center For Lyme Launches to Lobby Congress For More Research, Treatment Options

https://triblive.com/news/world/center-for-lyme-launches-to-lobby-congress-for-more-research-treatment-options/

Center for Lyme launches to lobby Congress for more research, treatment options

Patrick Varine
PATRICK VARINE

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SUBMITTED PHOTO/CENTERS FOR DISEASE CONTROL
This undated file photo provided by the U.S. Centers for Disease Control and Prevention shows a blacklegged tick, also known as a deer tick, a carrier of Lyme disease.
A new nonprofit launched this week will focus on lobbying Congress to expand funding for the development of new drugs and diagnostic tools for battling Lyme disease.

The Center for Lyme Action launched on Tuesday in addition to hosting a congressional forum with lawmakers from Minnesota, New Jersey and California, along with Sen. Susan Collins (R-Maine), who gave a keynote address via video.

“The incidence of Lyme and other tick-borne diseases has exploded over the past 15 years,” Collins said in her video statement. “The TICK Act that I authored would apply a three-pronged public health approach to address Lyme and other tick-borne illnesses, establishing a national effort and providing much-needed investments to help slow the spread of these devastating diseases and better protect the health of more Americans.”

Lyme disease is the fastest-growing vector-borne illness in the United States, and Pennsylvania ranks first in the nation when it comes to Lyme cases.

The National Institute of Health earlier this month released a “Strategic Plan for Tick-borne Disease Research” to address the rising incidence of tick-borne disease and better understand the complex interplay between host, tick, and pathogens.

The number of reported cases more than doubled from 2004 to 2016, according to NIH data.

The plan’s five main priorities are:

• Improve the fundamental knowledge about tick-borne diseases;

• Advance research to improve the diagnosis of such diseases;

• Accelerate research to improve their prevention;

• Promote research to improve treatment of all tick-borne diseases;

• Support tools and resources to advance all of the above goals.

“Lyme is a frustrating and debilitating disease, but it’s a problem we can solve,” said Center for Lyme Action co-found Bonnie Crater. “What is needed is dedicated and sustained funding to research and commercialize a better way to diagnosis and treat this growing public health threat.”

Below, hear Bell Township resident Amy Wiester’s story of dealing with nearly a lifetime of Lyme disease’s effects.

Crater said the NIH report is a positive development given that NIH funding has been in decline for many years. In 2000, the NIH budget for Lyme was $2,117 per patient compared to $700 per patient in 2018, according to Crater.

Similar legislation in the House has the goal of creating a national strategy to address Lyme disease and other tick-borne diseases and disorders.

Patrick Varine is a Tribune-Review staff writer. You can contact Patrick at 724-850-2862, pvarine@tribweb.com or via Twitter .

Category:

Activism, Lyme, Uncategorized

Schumer Amendment Secures First Increase in CDC Lyme Funding in Years

https://www.schumer.senate.gov/newsroom/press-releases/after-leading-the-charge-schumer-announces-passage-of-his-senate-amendment-increasing-by-over-12-cdc-

Press Release

08.27.18

AFTER LEADING THE CHARGE, SCHUMER ANNOUNCES PASSAGE OF HIS SENATE AMENDMENT, INCREASING BY OVER 12% CDC FUNDING TO COMBAT LYME DISEASE; SCHUMER AMENDMENT IN UPCOMING HHS APPROPRIATIONS BILL SECURES FIRST INCREASE IN CDC LYME FUNDING IN YEARS; SENATOR SAYS YEARS-OVERDUE BOOST IN FUNDING WILL SUPPORT ALL-OUT STATE AND LOCAL WAR AGAINST TICK-BORNE ILLNESSES

In Recent Years, Upstate New York Has Seen An Explosion Of Ticks, Lyme Disease, And Other Tick-Borne Illnesses, Making New York The #1 Target For Ticks In The Country

Schumer’s Recently-Passed Amendment To The Health And Human Services Appropriations Bill Will Increase By Over $1 Million CDC Funding To Thwart Tick-Borne Illnesses; Funding Boost Will Be Used To Study, Identify, And Prevent Exposure To Vector-Borne Pathogens That Cause Lyme Disease And Other Tick-Borne Illnesses

Schumer: Funding Increase For CDC To Fight Lyme Disease Will Help Protect Against Tick-Borne Illnesses

U.S. Senate Minority Leader Charles E. Schumer today announced that the U.S. Senate has passed his amendment to the upcoming Health and Human Services (HHS) appropriations bill to increase by 12.15 percent FY2019 funding for the Centers for Disease Control and Prevention (CDC) to combat Lyme disease and other tick-borne illnesses. Specifically, the bill increases Lyme disease funding from FY2018’s level of $10.7M to $12M for FY2019.

Schumer’s amendment secures the first increase in CDC Lyme disease funding in five years. Schumer said that this long-overdue increase in funding will be used to support the all-out state and local war against tick-borne diseases, as New York is the #1 target for tick-related disease in the United States. Schumer called the increase in funding a major victory for communities across Upstate New York and vowed to shepherd the funding through Congress and onto the president’s desk.

“Upstate New York has been feeling the brutal bite of Lyme disease and tick-borne illnesses for years now, and thankfully this long-overdue increase in CDC funding will give us the resources we need to strike back,” said Senator Schumer. “New Yorkers and their children shouldn’t have to worry that spending time outside in their backyards will leave them with a debilitating ailment like Lyme disease, and this funding will help to prevent that. I’m proud to secure this crucial funding to combat the spread of tick-borne illnesses, and will now fight tooth and nail to see that it passes Congress and is signed into law.”

Schumer said that the increase in funding from the CDC will specifically be used to target vector-borne pathogens which cause diseases in human beings. The funding increase will help understand when, where, and how people become exposed to vector-borne pathogens, as well as help to prevent exposure to vector-borne pathogens and mitigate potential consequences of infection. Additionally, the funding will be used to help implement vector-borne disease diagnostics, surveillance, control, and prevention programs.

Lyme disease is a bacterial infection carried by deer ticks, which can be transmitted by a bite to a human or animal host. If left untreated, the bacterium Borrelia burgdorferi travels through the bloodstream, manifests itself in body tissues, and causes mild or severe symptoms, depending on the case. Lyme disease begins as a rash at the location of the tick bite and then spreads to the nervous system and joints. Early diagnosis and antibiotic treatment are crucial to recovery. Appropriate antibiotic use in the early stages of Lyme disease typically results in a swift and total recovery. Untreated and undiagnosed Lyme disease – which regularly occurs – can lead to debilitating effects on a person’s health.

Senator Schumer has long fought for federal funding for the prevention, diagnosis, and treatment of tick-borne illnesses like Lyme disease, which have seen a major spike in cases across New York State. Earlier in 2018, during an in-person meeting with CDC Director Dr. Robert Redfield, Schumer received a firm commitment from the director that he would be working to address Lyme disease in New York State. Additionally, Schumer played an integral role in securing funding for the CDC in this year’s FY2018 omnibus spending bill — Schumer, one of 4 negotiators, secured $8.005 billion in the federal funding for the CDC, a $900 million increase from FY17. Schumer also helped secure a historic $3 billion increase in National Institutes of Health (NIH) funding, which can be used to expand and build upon existing NIH-funded Lyme disease research that is already occurring at New York institutions, such as Stony Brook, Columbia University, in the SUNY system and at Hunter College. Schumer has traveled throughout New York State advocating for increased funding to fight tick-borne illnesses, and will continue to advocate for these funds for New Yorkers.

 

 

Category:

Activism, Lyme, Uncategorized

November 2019 Support Group Meeting

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A recent Milwaukee Art show where my daughter exhibited some of her work.

If you’ve been reading my recent posts, you are aware I did a stint at the UW Hospital and a few ER visits for what doctors are calling an allergic reaction to Disulfiram/Antabuse. Please note, that while I responded very poorly, I’ve heard wonderful reports from others using the drug. To read all about my experience:  https://madisonarealymesupportgroup.com/2019/10/14/november-2019-lyme-support-meeting-oct-meeting-canceled-due-to-reaction-to-disulfiram/ and  https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/

For those of you who recognize my daughter, just a year ago she put on “Killer Green,” a musical about those struggling with Lyme disease:  https://madisonarealymesupportgroup.com/2018/02/09/killer-green-the-musical/

It was moving to say the least and I thank all of you who came to support her. Every seat was filled performance after performance with many patients attending. Many asked her how she could portrtray their struggles so succinctly. The answer is she saw both her parents on a daily basis fight to regain their health. For those of you struggling, I want to offer you hope – both Greg and I are symptom-free after a ten year battle. For the first time in years we have perfect health. So chins up and keep waging your personal war with stealth organisms who do not know the definition of grace.

Our regular support meeting will be:

  • Saturday, November 9, 2019
  • East Madison Police Station – 809 S Thompson Dr. Madison, WI
  • 2:30-4:30pm
Hope to see you all there!

 

 

Category:

Meetings, Uncategorized

Lyme & Reason – Fox 5 New York 2019

https://www.fox5ny.com/video/614435?

Lyme & Reason – Lyme Disease and the Power of Innovation

**Comment**
Fox5 does a fantastic job covering Lyme disease once again. For more of their coverage:  https://madisonarealymesupportgroup.com/?s=Fox+5  (Dr. Phillips’ interview is particularly good)
At 15:00 they talk about using Disulfiram/Antabuse for Lyme. Disulfiram is an old drug used for alcoholism but has research showing its ability to kill all forms of Lyme (borrelia):  https://madisonarealymesupportgroup.com/2019/07/14/disulfiram-breakthrough-drug-for-lyme-other-tick-borne-diseases/  Please note the three case reports in the comment section
My husband and I tried Disulfiram and were up to the full dose for a solid month.
Unfortunately, I had what doctors call an allergic reaction to it.

Please read about my experience and make sure you understand all risks before taking this medication:  https://madisonarealymesupportgroup.com/2019/10/14/november-2019-lyme-support-meeting-oct-meeting-canceled-due-to-reaction-to-disulfiram/

I worry particularly about single patients that do not have someone monitoring them while taking this drug. Evidently, a group of Lyme literate doctors are concerned that some patients with a genetic predisposition can have significant side effects when using Disulfiram:  https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/

Significant side effects hardly expresses what I went through.
 A $40 drug nearly killed me.

I don’t want to stop you from considering it, but please, please, discuss what happened to me with your doctor and read the “Disulfiram psychosis update” link and share with your doctor before taking it.

My initial side effects were:

  • converging eyes/vision
  • stomach bloating/gas/burping
  • inability to orgasm
NBC NewYork4 also did a fantastic series in 2017 called The Lyme Wars:
Here’s an old document I found called “Experimental Infection of the African Relapsing Fever Tick, Ornithodoros Moubata (Murray), With Borrelia Latychevi (Sofiev) by Willy Burgdorfer and Gordon E. Davis:
I have an old Army link showing tick experimentation as well but it’s been removed from the internet…..
For more on the bioweaponization of ticks:  https://madisonarealymesupportgroup.com/2019/07/19/biological-warfare-experiment-on-american-citizens-results-in-spreading-pandemic/  Author, Jerry Leonard, has spent untold hours studying this.

Category:

Activism, Lyme, Uncategorized

November 2019 Lyme Support Meeting (Oct. Meeting canceled – Due to Reaction to Disulfiram)

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As most of you are probably aware, I spent over a week in the hospital and a few trips to the ER recently.  It was very serious.  And yes, I’m talking deadly serious. According to the doctors at UW Madison, I had an allergic reaction to Disulfiram, an old drug that is currently being used on Lyme disease patients. It was very frightening as I had psychosis.  More accurately, I had a toxic reaction, and I’m not alone.

Psychosis is an abnormal condition of the mind that results in difficulties determining what is real and what is not – and that is the understatement of the year. 

Symptoms may include:

  • delusions and seeing or hearing things that others do not see or hear
  • incoherent speech and behavior that is inappropriate

If you are a medical practitioner prescribing this, please be aware of this issue. 

Treatment for psychosis is antipsychotics, counseling, and social support. It’s interesting that 3% of people in the United States could get this.  https://en.m.wikipedia.org/wiki/Psychosis

All I can say is, WOW.  I looked outside and it’s fall.  I’ve missed nearly 3 weeks of my life.

My dear husband of 30 years was my bulwark and unfortunately took the brunt of my psychosis. The good news is he’s still with me. We’ve now weathered through both being infected with Lyme/MSIDS and now we can add crazy, unbelievable, psychosis to the list of symptoms and conditions.

The next Support meeting will be Saturday, November 9th, at 2:30 at the East Madison Police Station. Details about the subject matter will be forthcoming.

I can’t wait to see all of you. Being with other sufferers gives me untold joy and comfort. I pray you can all make it, but if you can’t, I understand.

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Still Crazy After All These Years

Blessings and health, Alicia

 

 

 

 

 

 

 

 

 

Category:

Meetings, Uncategorized