Archive for the ‘Activism’ Category

Lyme Action Fly-In Planned for Washington DC

https://www.lymedisease.org/touched-by-lyme-lyme-action-fly-in-planned-for-washington-dc/

17 JAN 2020

Lyme Lobby Day

TOUCHED BY LYME: “Lyme Action Fly-In” planned for Washington DC

By Dorothy Kupcha Leland

Getting the Kay Hagan TICK Act signed into law was an important step in the right direction for the Lyme community. But the job isn’t over yet.

You’ll recall that the TICK Act recommends $150 million for vector-borne diseases over a five-year period. However, federal funding happens on a year-by-year basis. Thus, Congress must decide every year how much money goes where.

So the immediate challenge, relative to funding, is to persuade our Congressional representatives to appropriate $30 million for tick-borne diseases in Fiscal Year 2021. (The coming fiscal year runs from Oct 1, 2020 to Sept. 30, 2021.)

And that’s not all we want from upcoming Congressional appropriations. We also want to triple the National Institutes of Health’s projected Lyme budget, from $31 million to $93 million.

And increase the Funding for the Department of Defense’s Congressionally Directed Tick-Borne Disease Research Program.

All of these items were included in the federal budget passed last month by Congress and signed by the President. The budget is a policy statement, essentially saying “We think we should spend this much money on these specific things.”

The appropriations process–the important next step–is where the rubber actually hits the road. It officially gives the money for the project in question. (Sometimes items are included in the budget, but never end up getting funded. Obviously, that’s not what we’re going for here.)

“Nothing is going to change unless we have more money for Lyme disease,” says Bonnie Crater, one of the founders of the Center for Lyme Action (CLA). It’s a new lobbying group set up specifically to help increase federal funding for Lyme and other tick-borne diseases.

Lyme Action Fly-in

To that end, the CLA has organized a “Lyme Advocacy Day,” also called the “Lyme Action Fly-in.” It’s scheduled for February 11-12, in Washington DC.

The idea is for members of the Lyme community from around the country to converge on Washington DC. We’ll meet with lawmakers and their staffs—and ask for the funding we need.

I’m in! How about you?

Tuesday, Feb. 11, will be an education and training day for the visiting advocates, as well as a reception with lawmakers. There will be speakers and a dinner. That day’s events run from 2 – 8 pm.

Wednesday, Feb. 12, will be the actual Lobby Day, where teams of advocates will call on legislative offices. (Appointments will be set up in advance.) Events will run from 7:30 am (breakfast) to 6 pm.

We’ll have information packets and talking points from the CLA. And we’ll also have the chance to tell the people we meet with why these Lyme appropriations mean so much to us.

The CLA requests a $65 fee for each advocate, to help defray food and beverage costs over the two-day event.

I know this Advocacy Day isn’t something that everybody can do, for all sorts of reasons. But if you can, I hope you’ll join us. Click here to find out more and to register for the event.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

Category:

Activism, Lyme, Uncategorized

House Confirms Fiscal Year Spending 2020 For Lyme & Other Vector-Borne Diseases

https://lymediseaseassociation.org/government/federal-government/house-confirms-fiscal-year-spending-2020-for-lyme-and-other-vector-borne-diseases/

House Confirms Fiscal Year Spending 2020 for Lyme & Other Vector-Borne Diseases

The 116th Congress House Committee on Appropriations submitted a report in explanation of bill H.R. 2740, the Omnibus that funds Health and Human Services (HHS) including the National Institute of Health (NIH) and the Centers for Disease Control (CDC), and outlines the final legislative language and designation of funds for vector-borne diseases, including Lyme disease, for fiscal year ending September 30, 2020.

Highlights from the House Explanatory Statement include:

  • The Committee encourages NIAID to intensify research and development on Lyme and other tick-borne diseases, including research that will increase understanding of the full range of processes that cause Lyme disease infection. This should include research on the physiology of Borrelia burgdorferi and Borrelia mayonii, including the mechanisms of possible persistent infection, potential treatment protocols for extended or long-term symptoms attributed to Lyme and other tick-borne diseases, and development of more sensitive and accurate diagnostic tests for Lyme and tick-borne diseases, including next generation polymerase chain reaction (PCR) and new testing methodologies such as proteomics and metabolomics. The Committee directs NIAID to support research on the heightened incidence of Lyme Disease and vector-borne diseases due to global warming.
  • The Committee encourages NIH to improve early diagnosis and treatment of Lyme and other tick-borne diseases (TBD) to prevent the development of late stage disease and more serious and longer-term disability, but also intensify research on diagnosis and treatment of late stage and chronic disease. In addition to development of highly sensitive and specific diagnostics for all stages of disease, a goal should be to develop diagnostics with appropriate sensitivity and specificity for the detection of infection. Treatments also should be developed for all stages of Lyme and other TBD, determining optimal combinations of new candidate or older drugs and exploring novel combinations.

A statement from a Congressional spokesperson further clarifies that, “The agreement includes an increase and encourages CDC, in coordination with NINDS and NIMH, to include in its surveillance the long-term effects. CDC is also encouraged to coordinate with NIH on publishing reports that assess prevention, treatment, diagnostic advancements, and links between tick-borne disease and psychiatric illnesses. CDC is encouraged to focus efforts in endemic areas as well as areas not yet considered endemic.”

Thank you to Congressman Chris Smith (NJ-4) for working with LDA to get some of this language included. Thank you to other advocates and legislators who also provided input into the process.

The CDC received a $2,000,000 increase for Lyme disease.

Click here to view the full H. Rept. 116-62 Explanatory Statement

Click here to view HR 1865 Division A

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**Comment**

The heightened incidence of Lyme disease has nothing to do with “global warming”according to independent Canadian tick researcher John Scott, and is a red herring being used to divert our attention from important issues:  https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/

“For blacklegged ticks, climate change is an apocryphal issue.” -John Scott

PLEASE SPREAD THE WORD THAT CLIMATE DATA WILL NOT HELP PATIENTS ONE IOTA.

For an excellent interview with John Scott:  https://madisonarealymesupportgroup.com/2017/08/14/canadian-tick-expert-climate-change-is-not-behind-lyme-disease/ (He also explains the bogus Lyme vaccine as well)

Excerpt:

John explains, “The climate change range expansion model is what the authorities have been using 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. The grandiose scheme was a nefarious plot to let doctors off the hook from having to deal with this debilitating disease. I caught onto it very quickly. Most people have been victims of it ever since.”

“This climate change ‘theory’ is all part of a well-planned scheme. Even the ticks are smarter than the people who’ve concocted this thing,” he says.

“Climate change has nothing to do with tick movement. Blacklegged ticks are ecoadaptive, and tolerate wide temperature fluctuations. On hot summer days, these ticks descend into the cool, moist leaf litter and rehydrate. In winter, they descend into the leaf litter, and are comfortable under an insulating blanket of snow. Ticks have antifreeze-like compounds in their bodies, and can tolerate a wide range of temperatures. For instance, at Kenora, Ontario, the air temperature peaks at 36°C and dips to –44°C, and blacklegged ticks survive successfully.

“Ticks are marvellous eco-adaptors. They will be the last species on the planet. Do you see how silly this theory of climate change is as a way to rationalize what’s happening. It’s all a red herring to divert your attention,” he explains.

Please know that Lyme advocates can also fall prey to the draw of power and money and for some reason good, independent research is being ignored to the peril of patients. Diverting research dollars away from issues like transmission studies, studies for more sensitive and accurate testing, as well as effective treatments has been a ploy of authorities since the beginning. Research has been run by a Cabal who have rife conflicts of interest, controlling the narrative and setting faulty study parameters for a predesignated outcome:  https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/

https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

Lyme patient and advocate Carl Tuttle writes about this diversion of funds away from important issues needing study such as borrelia persistence and appropriate treatment:  https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25690522?

Excerpt:

Per my email below which you were carbon copied on January 31st, wouldn’t it make better sense to fund research into finding a cure for this antibiotic resistant/tolerant superbug instead of financing those with a bias (racketeering scheme) against persistent infection?

NIH Funding: RO1 CK 000152 has been used to suppress evidence of persistent infection while avoiding the horribly disabled Lyme patient community. Isn’t this fraudulent use of taxpayer dollars? So why does it continue under the support of the Centers for Disease Control; an agency under your direct supervision?

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25681241?

Excerpt:

One again we see Dr. Wormser unethically fixated on the acute stage of disease after bulls-eye rash. This does not represent the entire Lyme patient population!

Patients who have had a prolonged exposure to the pathogen and advance to late stage are almost always incapacitated. By avoiding the late stage horribly disabled Lyme patient population, you can perpetuate a forty year racketeering scheme to deny persistent infection.

Patient testimony all across America is describing a disease that is destroying lives, ending careers while leaving its victim in financial ruin.

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/25671214?

Excerpt:

The continuous stalling keeps the current dogma and direction intact because a chronic relapsing seronegative disease does not fit the vaccine model.

Direct detection methods have been avoided because they have the potential to identify chronic Lyme.

It’s all about the VACCINE!!!!!! Nothing has changed and the five year NIH STRATEGIC PLAN FOR TICKBORNE DISEASE RESEARCH is written by the same government agency responsible for funding all of the Junk Science aimed at suppressing evidence of persistent infection.
https://www.niaid.nih.gov/sites/default/files/NIH-Strategic-Plan-Tickborne-Disease-Research-2019.pdf

Time to become extremely focused and demand research for issues that will help patients. We don’t need more climate data.

 

 

 

 

 

Category:

Activism, Lyme, Ticks

First Coronavirus Case in Wisconsin

https://6abc.com/health/wisconsin-confirms-1st-case-of-coronavirus-12th-in-us/5906048/

Coronavirus outbreak: 12th US case of new virus from China confirmed in Wisconsin, state says

Feb. 5, 2020

MADISON, Wis. — A Wisconsin resident has been sickened with a new virus that originated in China and spread across the world, the first case in the state and just the 12th in the country.

Health officials said Wednesday that the patient is isolated but state health officials would not say where they are located, their age or any other details.

Dr. Ryan Westergaard, chief medical officer in the Department of Health Services Bureau of Communicable Disease, said the person was never hospitalized but was evaluated and tested at the University of Wisconsin Hospital in Madison.

Other U.S. cases were reported in California, Illinois, Massachusetts, Washington and Arizona.

More evacuees from China have arrived in the United States amid the deadly coronavirus outbreak.

On Wednesday, two planes carrying hundreds of American evacuees from China arrived at a military base in California.

The evacuees are the second wave of Americans rushed out of Wuhan, China, the epicenter of an outbreak that has infected more than 24,500 people globally and killed more than 490.

The evacuees will be screened by Center for Disease Control medical personnel upon arrival and some will be moved to a quarantine site on the base, where they will reside for a federally mandated 14-day quarantine in the base. More will fly to Miramar Marine Corps Air Station in San Diego for quarantine.

Symptoms of the virus include fever, cough and difficulty breathing, which could appear between two to 14 days after someone is exposed to the virus. Health officials said symptoms have ranged from a mild illness, such as a common cold, to severe pneumonia.

Health officials recommend preventing the spread of the virus by washing your hands frequently and staying at home when you’re sick.

The Associated Press contributed to this report.

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For more:  https://madisonarealymesupportgroup.com/2020/02/04/novel-coronavirus-the-latest-pandemic-scare-which-professor-states-is-a-biowarfare-weapon/

https://madisonarealymesupportgroup.com/2020/02/01/on-the-origins-of-the-2019-ncov-virus-wuhan-china-experimental-vaccine-type/

Category:

Activism, Viruses

What is Disulfiram & Why is it Sparking Excitement in the Lyme Community?

https://www.lymedisease.org/disulfiram-bauer-moysa/

What is disulfiram and why is it sparking excitement in Lyme community?

Jan. 30, 2020

Disulfiram for Lyme

by Kristina Bauer and Cozette Moysa

Disulfiram is a chemical compound first synthesized in the late 1800s. By the early 1900s, it was used as an industrial agent in the manufacture of rubber. The sulfur-containing substance also had some medicinal uses, such as treating parasites.

In 1937, a physician published a paper about disulfiram. He reported that rubber workers experienced violent physical reactions after they drank alcoholic beverages. He suspected this was connected to their exposure to disulfiram.

This led to the discovery of what is commonly called the “disulfiram reaction”—being exposed to disulfiram and consuming alcohol causes an intensely disagreeable physical reaction.

In 1951, the Food and Drug Administration licensed disulfiram under the trade name Antabuse, for the purpose of discouraging alcoholics from drinking. (It is sold under different trade names in other countries.) Antabuse has been on the US prescription drug market ever since and has been recognized as having mild to moderate side effects.

In recent years, a combination of factors has resulted in new attention being focused on disulfiram. In 2015, a research team led by Dr. Kim Lewis of Northeastern University demonstrated that Borrelia burgdorferi (Bb), the causative agent of Lyme disease, forms dormant persister cells. These persisters cannot be eradicated by the standard recommended antibiotics. Dr. Lewis’s findings prompted several drug-screening studies looking for medications to kill off these antibiotic-tolerant persister cells.

New focus on old drug

In 2016, BioADD lab—located at Stanford University and run by Director Jayakumar Rajadas PhD and lead researcher Raveendra Pothineni PhD—published groundbreaking research. After testing thousands of compounds against cultures containing active and persister Bb cells in the laboratory, they found disulfiram to be the most effective in killing all forms of the bacteria. This was a stunning discovery.

Later that year, Dr. Lewis spoke about his work with persisters and the potential use of disulfiram against Lyme disease at the LymeMIND conference in New York City. A long-term Lyme patient later viewed a video of Dr. Lewis’s presentation on YouTube. The patient brought the information to his treating physician, Dr. Kenneth Liegner, and asked to try the medication.

After Dr. Liegner conducted a search of the medical literature on the drug, he started the patient on disulfiram in March 2017. Later on, Dr. Liegner started two other patients on disulfiram as well. All three had been diagnosed with Lyme disease and babesiosis and had remained ill even after undergoing years of antibiotic treatment. On disulfiram, all three improved substantially. Dr. Liegner published a case study paper on these three patients in May 2019.

During 2018 and 2019, disulfiram success stories began circulating among doctors and patients in the Lyme community, both in the United States and abroad. Soon, an increasing number of physicians and patients undertook disulfiram therapy, with varying results.

Patient feedback about the drug

Several Facebook patient support groups, such as Disulfiram Experience for Lyme, were established in 2019. These social media groups have provided valuable information regarding patient response to the drug. More than 15,000 people from around the world have joined such groups. Meanwhile, the number of Lyme patients conducting their own personal disulfiram trials has increased steadily.

Reports of positive responses to disulfiram have been encouraging, but unanticipated and sometimes severe tolerability issues have emerged. Most notably, a considerable number of patients on disulfiram have reported newly emerging or a worsening of mild-to-severe neuropathy. (Neuropathy is nerve dysfunction that may include numbness, tingling, shooting pains, and/or muscle weakness.) On the other hand, some Lyme patients have said that disulfiram made their pre-existing neuropathy go away.

People taking disulfiram must avoid all forms of alcohol, starting 12 hours prior to the first dose. This must continue throughout therapy and for two weeks after finishing the last dose. The disulfiram reaction can start suddenly, last for several hours and be extremely uncomfortable. Initial symptoms may include severe flushing of the skin, nausea, vomiting and headache. In rare cases, the reaction has been fatal. Alcohol is contained in many products, and patients must learn to avoid being exposed to its many hidden forms. (See chart at end of this article.)

“Start low and go slow”

There are clearly big differences in side effects between people who take Antabuse to combat alcoholism and chronically ill patients who use it to treat Lyme disease. The starting dose suggested for alcoholism (250-500 mg/day) is much higher than the dose suggested for treating Lyme disease. Lyme doctors and their patients who have experience with the drug strongly advise to “start low and go slow.”

Some people begin with a fraction of a tablet (or a compounded low dose), which is administered daily, or even once or twice a week. The dosage is raised in tiny increments, perhaps no more frequently than every two weeks, depending on evaluation, history and patient response. The recommended blood work must be conducted on a regular basis, especially within the first two months.

Disulfiram is a deceptively small molecule that undergoes extensive and complex metabolism. It requires a full two weeks for disulfiram’s metabolites to exit the body.

Severe neuropathy has most often been associated with the higher doses recommended for alcoholism. The development of neuropathy, however, has been reported even at low doses. A few alcoholic and Lyme disease patients taking disulfiram have been reported to develop a temporary psychosis. This is thought to be dose-dependent and reportedly resolves within 4-5 days after stopping the drug.

The discovery of disulfiram’s ability to eradicate Bb in the lab and reports of positive results for many patients has rocked the Lyme community. The novel use of this old drug provides new hope for Lyme patients and underscores the need for further research. It is essential for patients to recognize that any and all prescription medications can potentially cause adverse effects. The decision to take any prescription medication, including disulfiram, requires serious consideration and must be discussed with the treating physician.

Kristina Bauer is a Lyme advocate, patient and mother of four children with congenital Lyme disease. Cozette Moysa is a retired pharmacist with over 30 years of experience with the California Department of Mental Health. She also has a child with Lyme and is very involved with Lyme advocacy. They can be contacted via the Disulfiram for Lyme website.

alcohol disulfiram chart

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For more:  https://madisonarealymesupportgroup.com/2019/11/19/if-disulfiram-is-the-cure-for-lyme-disease-should-it-be-prescribed-to-all-lyme-disease-patients/

https://madisonarealymesupportgroup.com/2019/06/03/disulfiram-in-the-treatment-of-lyme-babesiosis-3-case-reports/

https://madisonarealymesupportgroup.com/2019/07/14/disulfiram-breakthrough-drug-for-lyme-other-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2019/07/26/is-disulfiram-the-magic-bullet-for-chronic-lyme-disease/

https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/

https://madisonarealymesupportgroup.com/2019/10/27/disulfiram-psychosis-update-2/

https://madisonarealymesupportgroup.com/2019/09/18/dr-liegner-interview-on-disulfiram/

https://madisonarealymesupportgroup.com/2020/02/04/a-patient-interviews-dr-kinderlehrer-about-disulfiram/

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Category:

Activism, Lyme, Treatment

A Patient Interviews Dr. Kinderlehrer About Disulfiram

https://www.lymedisease.org/bauer-interview-disulfiram/

22 JAN 2020

By Kristina Bauer

I contracted Lyme disease and co-infections in 1980, in Fairview Heights, Illinois. I remained undiagnosed and untreated until 2012.

One year later, my husband and I discovered that all four of our children had been infected at birth with congenital Lyme disease and co-infections. They started treatment in 2013.

Our family’s journey has taken us down an expensive, scary and lonely road in search of support and effective treatments.

Few doctors are sufficiently knowledgeable and experienced in treating these complex illnesses. And there are even fewer Lyme-literate practitioners to treat children.

I founded Texas Lyme Allianceto provide support and information for others facing the daunting challenges of tick-borne diseases.

Finding disulfiram

I first learned about disulfiram in January 2019. The drug, also known as Antabuse, has been used for 68 years to treat alcoholics. (If you drink alcohol while on the drug, you’ll feel horribly sick.)

Recently, researchers have discovered it has strong in vitro activity against the bacteria that causes Lyme disease. My reading on the subject started with the scientific article published in 2016 by researchers Drs. Jayakumar Rajadas and Raveendra Pothineni at BioADD laboratory, headquartered at Stanford University.

The more I read, the more I wanted to try it for myself. I discussed the possibility of conducting an empiric trial of the drug with my physician. He was familiar with the drug and after examining the medical literature, he agreed to work with me. I had two rounds of disulfiram treatment over the next eight months.

The first round was conducted very conservatively but was before Dr. Kenneth Liegner published his disulfiram case studies in April 2019. After learning Dr. Liegner’s suggested doses, I realized I may have exceeded the dose appropriate for my body weight. I stopped the drug due to uncomfortable side effects. I waited for about six weeks, until all inflammation had ceased. Then I resumed the disulfiram.

My second round of disulfiram lasted another four months, with considerably fewer side effects. After slowly titrating upwards to 375 mg/day for 60 days, I stopped again due to side effects that included brain fog, dizziness and fatigue. But much to my surprise, my previous intractable neuropathy secondary to Lyme disease had disappeared! I’m now three months from my last round and it’s still gone.

There is more work to be done. Disulfiram therapy has uncovered symptoms consistent with viral, parasitic and tick-borne illnesses that my body is still experiencing. I am currently focusing on detoxing and natural treatments.

Encouraging results

Many patients report feeling greatly improved after disulfiram therapy and this is extremely encouraging. I am hopeful that once I open up my detox pathways further, I will be able go back on disulfiram and finally win this war.

In the meantime, I have started a Facebook group for Lyme patients who are taking disulfiram or who want to learn more about it: Disulfiram Experience for Lyme Support Group.  I also have a website called Disulfiram for Lyme.

The website has several video interviews with doctors and researchers about treating Lyme with disulfiram. Here’s my latest one, with Dr. Dan Kinderlehrer.

This video offers an update of my first interview of his experience in treating over 100 chronic Lyme patients with disulfiram.  He discusses such issues as Herxheimer reactions while on disulfiram, methylation problems, and the need for probiotics and other supplements. Anyone who has started disulfiram or is thinking about it should pay close attention to what he says.

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**Comment**

I’ve posted this before, but psychosis is not all that rare and I had it:  https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/  This frightening experience has cost me $20K and a week in the hospital.

 For an excellent read by Dr. Mass:  https://madisonarealymesupportgroup.com/2019/11/19/if-disulfiram-is-the-cure-for-lyme-disease-should-it-be-prescribed-to-all-lyme-disease-patients/

Category:

Activism, Lyme, Treatment