Archive for the ‘Lyme’ Category

Yale “Dream Team” Lyme Disease Treatment Recipe

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Courtesy: Microbiologist Tom Grier

Yes, you are reading this correctly – the boneheads at Yale state that you shouldn’t get treatment even if you have the EM rash (which is indicative of Lyme disease), and test positive on tests, and that you should just wait around on your laurels to get worse.

There are still far too many noodle-headed doctors still following this antiquated and unscientific advice.
Please remember, some of the sickest patients NEVER test positive on tests which look for antibodies.

And while the EM rash is indicative of Lyme, many, many never get it. No one I work with gets the rash. The graph from Lyme Disease Organization shows those getting the rash range from 27-80% – hardly a sure thing. https://www.lymedisease.org/lymepolicywonk-how-many-of-those-with-lyme-disease-have-the-rash-estimates-range-from-27-80-2/

Don’t trust mainstream medicine with tick-borne illness. Get to an ILADS trained health professional.

 

Category:

Activism, Lyme, research, Treatment

NIH Strategic Research Plan Addresses Growing Tickborne Diseases Threat

https://www.nih.gov/news-events/news-releases/nih-strategic-research-plan-addresses-growing-tickborne-diseases-threat

Thursday, October 10, 2019

NIH strategic research plan addresses growing tickborne diseases threat

Mouth Parts of an Argas monolakensis TickThis image shows how the design of the mouth makes ticks generally difficult to remove once they’ve attached for a blood meal.NIAID
NEWS RELEASE

What

The incidence of reported cases of tickborne diseases in the United States has significantly increased in recent years. It is expected to continue to grow as tick species expand their geographical reach and new tick-transmitted pathogens emerge, raising the potential for serious human illness and death. A new strategic research plan from the National Institutes of Health aims to build on — and accelerate — new and existing research initiatives to improve scientific understanding of ticks and the pathogens they may transmit and to develop the necessary tools and strategies to better diagnose, prevent and treat tickborne diseases.

According to the U.S. Centers for Disease Control and Prevention, 59,349 cases of tickborne disease were reported in 2017 compared to 48,610 cases in 2016. Lyme disease accounted for the bulk (82%) of the cases. Recent CDC estimates suggest that Lyme disease is underreported and that the true incidence is likely 10 times higher. At least 20 different disease-causing bacteria, viruses and parasites are known to be transmitted from ticks to people. Depending on the disease, patients can experience symptoms that range from mild infections that resolve on their own to serious illness, extended disability, or death.

Many tickborne diseases have been discovered only recently. For example, in 2009, scientists reported a red-meat allergy, known as “alpha gal syndrome.” Growing evidence suggests that this reaction may be associated with the bite of a tick,  but further research is needed to understand this connection. Newly identified tick-transmitted pathogens continue to be reported, raising concerns about missed diagnoses, inadequate treatment, and knowledge gaps related to tickborne diseases.

The new NIH Strategic Plan for Tickborne Disease Research focuses on five scientific priorities for advancing research and development over the next five years.

  • First, the plan calls for improving fundamental knowledge of tickborne diseases, including the biology of tickborne pathogens; how they are transmitted to humans, evade the immune system, and spread within the body. This area also includes determining the cause of persistent symptoms in some people infected with tickborne diseases, such as Lyme disease, and furthering the understanding of how tick-derived factors contribute to the establishment and severity of disease.
  • Second, the plan calls for improving detection and diagnosis of tickborne diseases by developing rapid diagnostic tests that can detect a pathogen both early and late in infection and distinguish between active and past infections.
  • Third, NIH will support the development of diagnostics capable of predicting treatment success and identifying human biomarkers of infection and persistent symptoms. The new plan also prioritizes the acceleration of research designed to prevent tickborne disease infection, including vaccines, and immune-based treatments, as well as strategies to reduce the transmission of tickborne pathogens to animal populations that serve as hosts.
  • Fourth, the plan focuses on research to develop new treatments for tickborne diseases and techniques to reduce disease complications.
  • Fifth, the plan prioritizes the development of tools and resources to advance tickborne disease research by improving scientists’ access to biological samples, tickborne disease genetic data, and supporting preclinical development of promising products.

NIH intends to expand collaborations across its institutes and centers to promote a multidisciplinary approach to tickborne disease research, answer complex biological questions and encourage the application of state-of-the-art technologies used successfully in a range of scientific disciplines.

The new NIH strategic plan builds on the activities of the Department of Health and Human Services Tick-Borne Diseases Working Group, which issued a 2018 report to Congress outlining research recommendations. NIH sought input from the research and medical communities, patient advocacy groups, pharmaceutical industry, and the general public in developing this strategic plan.

Materials

NIH Strategic Plan for Tickborne Disease Research

Who

Anthony S. Fauci, M.D., director of the National Institute of Allergy and Infectious Diseases, and Robert H. Carter, M.D., director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, both part of the NIH, are available to comment on the strategic plan.

NIAID conducts and supports research — at NIH, throughout the United States, and worldwide — to study the causes of infectious and immune-mediated diseases, and to develop better means of preventing, diagnosing and treating these illnesses. News releases, fact sheets and other NIAID-related materials are available on the NIAID website.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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**Comment**

I had to read this about twice in disbelief.  I just hope it’s all true. Remember, these are the people that for 40 years have told us it’s “all in your head,” and to just take an anti-depressant.

Category:

Activism, Lyme, Ticks

Senate Bill Would Create National Strategy to Combat Rise of Tick-borne Illnesses

https://www.wmtw.com/article/senate-bill-would-create-national-strategy-to-combat-rise-of-tick-borne-illnesses/29660201 News Video Here

Senate bill would create national strategy to combat rise of tick-borne illnesses

Maine has highest incidence of Lyme, tick-borne illnesses in country
Steve Bottari
Anchor

WASHINGTON —A bill to create a national strategy to combat the rise in tick-borne illnesses passed out of a U.S. Senate committee Thursday and now goes to the full Senate for consideration.

The Kay Hagan Tick Act, sponsored by Maine U.S. Sen. Susan Collins, would provide $20 million annually for funding to states and health departments to improve public education and early detection and treatment.

Maine has the highest incidence of tick-borne illnesses in the country, Collins said in an interview with WMTW News 8.

In 2018, there were some 1,400 new Lyme disease cases in Maine. In 2010, the number was just 752.

“If tick-borne illnesses are caught early enough and treated early, often they have a very successful outcome,” Collins said. “But if they are not — which is often the case — they can produce lifelong health consequences.“

The bill is named after former U.S. Sen. Kay Hagan, who died this week from complications of the Powassan virus, which is spread by ticks.

Maine U.S. Sen. Angus King is a co-sponsor of the legislation.

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**Comment**

Senator Hassan Applauds HELP Committee of Bipartisan Kay Hagan Tick Act

Senator Hassan speaks of how she has watched friends suffer with a horrible form of dementia and who have lost their lives due to Lyme disease.

It appears word is finally getting to the politicians – now the word needs to wrap up the side of the heads of those in the CDC/IDSA/NIH.

Until these fraudsters admit to the devastation caused by this complex illness mainstream medicine will continue to abuse and malign those seeking medical help who suffer with tick borne illness.

The CDC has undermined everything done over the years at the State level:  https://madisonarealymesupportgroup.com/2017/07/07/cdc-sabotages-state-laws-protecting-lyme-patients/

Word on the street is that doctor protection laws aren’t working as well as bills telling doctors they must tell patients that even though a Lyme test comes back negative, they could still be infected.

Unfortunately, nothing’s really changed yet.

Please make it your personal goal to not allow your representative to rest until they know how wrong Lyme/MSIDS has been handled through the years.  Tell them how you were treated and how they need to speak up and represent those too ill to represent themselves.

You can make phone calls and write letters from your bed.
Please know that things will not change until we push this monster up the hill.  Alone we are weak.  Together we are strong.

 

Category:

Activism, Lyme

Suspect Lyme Carditis? Start Empiric Antibiotics, Case Report Suggest (And Lyme Carditis is Not Rare!)

https://www.medscape.com/viewarticle/920145

Suspect Lyme Carditis? Start Empiric Antibiotics, Case Report Suggest

By Jennifer Garcia

October 21, 2019

Lyme carditis, caused by infection with the spirochete Borrelia burgdorferi, is a rare but potentially fatal complication that may be prevented with rapid empiric antibiotic treatment.

In a new case report, public health officials describe two patients from areas where Lyme disease is endemic. The patients presented with vague, nonspecific signs and electrocardiogram (ECG) changes suspicious for Lyme carditis.

Although borreliosis was suspected and was tested for, neither patient received antibiotic therapy while awaiting test results, and both subsequently died.

“Guidelines recommend simultaneous initiation of empirical antibiotic therapy and Lyme serologic testing when Lyme carditis is suspected. Lyme carditis can progress rapidly, and waiting for confirmatory diagnostic therapy to initiate antibiotic treatment may result in negative outcomes,” write Grace E. Marx, MD, MPH, from the Centers for Disease Control and Prevention in Fort Collins, Colorado, and colleagues.

The authors note that their objective in reporting the cases was

“to remind clinicians of the importance of early recognition and treatment of Lyme carditis.”

The report was published online today in the Annals of Internal Medicine.

The first patient was a 57-year-old man from Vermont who had a 1-week history of fever, fatigue, chest pain, and shortness of breath. Erythematous macules were noted on the trunk, and ECG revealed first-degree atrioventricular block. Despite consultation with an infectious disease physician and positive results for B burgdorferi, antibiotic therapy was not initiated, and the patient died 12 days after initial presentation.

The second patient was a 49-year-old woman from Massachusetts who presented with nausea, vomiting, and severe headache. A CT scan and an ECG were normal. The patient was discharged with antiemetics and analgesics. Two weeks later, she reported syncopal episodes, fatigue, as well as bladder and bowel incontinence. An ECG demonstrated atrioventricular dissociation. Continuous cardiac event monitoring and Lyme testing were ordered. Two days later, results of Lyme testing came in positive, and antibiotics were dispensed. The patient died the following day, before the first antibiotic dose was taken.

Postmortem histopathologic evaluation of heart tissue in both patients revealed

“lymphohistiocytic pancarditis with immunohistochemical and molecular evidence of B burgdorferi.”

The authors acknowledge that Lyme carditis is rare and that only nine other fatal cases have been reported in the literature. However, given the risk for rapid progression in these patients, current guidelines recommend

“temporary pacing by an external pacemaker for patients with symptomatic or high-risk electrocardiographic features.”

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**Comment**

I pray to God that this information is getting to doctors.

Please know Lyme carditis is NOT RARE!  It’s just rarely reported. Also, the fact there are already nine known fatal cases in the literature should cause every doctor to pause and consider. ER doctors also need to know this as many people start off in the ER with heart symptoms but are sent home when they can’t seem to find anything initially.  Unfortunately it isn’t until the heart issues become much more severe or end in death that they are taken seriously.

How many more have to die before doctors wake up?

I personally know patients with serious heart issues that were pooh poohed by doctors. I hope they are still alive.

In this article, CDC expert Dr. Forrester comments that 4-10% of Lyme patients get carditis.  If we take the CDC’s estimate that 300,000 people contract Lyme each year, that’s 12,000 –  30,000 with Lyme carditis. https://madisonarealymesupportgroup.com/2019/02/21/diagnosis-treatment-of-lyme-carditis/

Does that sound rare to you?

https://madisonarealymesupportgroup.com/2018/07/09/with-unexpected-death-autopsies-should-look-for-lyme-carditis/

Excerpt:  “Lyme expert Dr. Daniel Cameron has done a nice job of summarizing five cases in a blog. http://danielcameronmd.com/autopsy-study-reviews-cases-due-to-sudden-cardiac-death-from-lyme-disease/
Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis. (March 2016)
http://ajp.amjpathol.org/article/S0002-9440(16)00099-7/abstract
Excerpt:

“Fatal Lyme carditis caused by the spirochete Borrelia burgdorferi rarely is identified. Here, we describe the pathologic, immunohistochemical, and molecular findings of five case patients.”

Please get the word out.  Enough people have died.

Category:

Heart Issues, Lyme, research, Treatment

Wisconsin Tick-Borne Illness Center of Excellence Open But Needs Practitioners

Wisconsin Tick-Borne Illness Center of Excellence Now Open

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Northern Wisconsin has opened its first lyme and tick-borne illness treatment and research center.

Inspired by Jeff and Jillayne Waite and the tragic loss of their beautiful daughter Jen to tick-borne illness and brought to fruition by the tireless efforts and compassion of the Women’s Legacy Council and the Howard Young Foundation, Jen’s spirit will live on.

The Center of Excellence is under the direction of Dr. Andy Kogelnik of the Open Medicine Institute. Connie Campbell RN, BSN is the Clinic Program Director, Kathy McCaughn is the Office Manager and Katelyn Dallman is the Research Associate. The Advisory Board is comprised of Dr. Brian Fallon MD Columbia University, Dr. Neil Spector MD Duke University and Dr. Samuel Shor MD past President of ILADS.

Dr. Kogelnik is currently seeing patients on a limited basis so the Center is actively looking for practitioners interested in working at the clinic. There is currently a patient waiting list. The Howard Young Foundation is fund raising to support the clinic through it’s early stages so please support if so inclined. Please direct all inquiries to the Howard Young Foundation  https://www.howardyoungfoundation.org/tick-borne-illness/

Address: 240 Maple St.

Woodruff, WI. 54568

Located in the Howard Young Medical Center, Woodruff, WI.

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For more:  https://madisonarealymesupportgroup.com/2019/01/11/wisconsin-tick-borne-illness-center-of-excellence/

https://madisonarealymesupportgroup.com/2019/07/02/wisconsin-public-radio-on-tick-borne-illness-center-of-excellence/  Interview with Dr. Kogelnik

https://www.howardyoungfoundation.org/tick-borne-illness/

 

 

Category:

Activism, Lyme, Treatment