Archive for the ‘research’ Category

Help Lyme Research Agenda

https://www.lymedisease.org/lymepolicywonk-help-shape-top-10-survey/  by Lorraine Johnson, JD, MBA, and Chief Executive Officer of LymeDisease.org.

Help Shape Top 10 Priorities for Lyme Research Agenda by Taking Our Survey  

(Click on link above to take survey)

Today, LymeDisease.org launches a survey of 25 research questions for the community to vote on and prioritize. The answers will be used to develop a research agenda for the Lyme community which will be publicized and used as a tool to give patients a voice in the funding of research. The ultimate goal is to ensure that research that matters to patients is funded.

It’s a fact of life that scientists often pursue research questions for their own reasons. Sometimes it’s a pet theory. Other times it may be aligned with a commercial prospect or research that may further their career. Unfortunately, those reasons don’t necessarily line up with the priorities of the people who have the most at stake in the outcome of that research—critically ill patients who are waiting for a cure.

A recent British Medical Journal article by Sally Crowe who works with the James Lind Alliance in the UK explains why patient-driven research agendas should be the foundation of funding grants:

“The …objective of . . . health research is to improve the health outcomes of patients. Our findings show a critical gap between current research and what patients considered to be high priority, and may reflect the lack of patient engagement in research priority setting.”

Our survey is the next step in a process launched in November 2015 at the American Association for the Advancement of Science (AAAS) in Washington D.C. Fifty Lyme disease experts participated in the conference—including 23 patients, 17 researchers, and 10 clinicians. Kristen Honey at the White House orchestrated the convening. LymeDisease.org was given the lead in developing the research question prioritization process and three of its board members spoke at the conference. I was fortunate to participate on a big data panel, with Dr. John Aucott, and D.J. Patel, White House Chief Data Scientist, and announce the launch of our big data project, MyLymeData.

Many physicians from the International Lyme and Associated Diseases Society, including Drs. Ken Liegner, Sam Shor, Chris Green, and Betty Maloney attended. Participating researchers included Drs. John Aucott, Ying Zhang, Nevena Zubcevik, and Cheryl Koopman, Patient community leaders included Phyllis Mervine, Jill Auerbach, Pat Smith, and others.

A series of short presentations sparked debate and dialogue among those attending and ultimately resulted in a preliminary list of research priorities. The decision could have ended there, in the hands of 50 people. However, the goal was to submit the research agenda to the community at large to ensure broad, inclusive participation from the community for those who did not attend the conference.

After last year’s kick-off conference, over 1,000 MyLymeData participants ranked the importance of the preliminary questions and suggested new questions to include on the list. We are now asking for your help in the final step of prioritizing the questions.

This will help us understand which questions are most important to patients, carers, families, researchers, and healthcare professionals for future research.

Please take part if you or a loved one has Lyme disease, or if you are a clinician working with Lyme patients, or a scientist conducting Lyme disease research. Organizations representing the interests of people with Lyme disease may also participate.

Our process is loosely based on that of the James Lind Alliance, which brings clinicians and patients in the UK together to establish research priorities. The James Lind Alliance process typically involves a number of in-person meetings and takes two or more years. We are using technology to amplify the patient’s voice and increase the reach of the survey to include patients who were not involved in the initial meeting.

If you want further inspiration on what’s important for research, we recommend that you take a look at a guest blog by Lyme patient Sherrill Franklin giving her views.

The survey takes roughly 5-10 minutes to complete. Please take the survey so your voice can be counted!

Crowe S, Giles C. Making patient-relevant clinical research a reality. BMJ. 2016;355.

The LYME POLICY WONK blog is written by Lorraine Johnson.  You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient-centered big data project, MyLymeData, please register now.

 

Category:

Activism, research

Dentistry Furthering Lyme Research

https://www.utoronto.ca/news/how-bacteria-invade-u-t-research-sheds-light-age-old-mystery

Senior author and researcher Tara Moriarty, assistant professor at the Faculty of Dentistry and the Department of Laboratory Medicine and Pathobiology, Faculty of Medicine at the University of Toronto, has not only discovered live-imaging where the team has watched borrelia in the blood stream use ‘catch bonds’ and ‘tethers’, to survive being swept away with the force of blood, they have also found bone loss in mice directly correlated to the bacterial load of Borrelia burgdorferi (Bb) found in the bones.  http://iai.asm.org/content/early/2016/12/08/IAI.00781-16.abstract  It also took only four weeks to advance to Osteopenia – a condition that leads to osteoporosis.

https://www.utoronto.ca/news/u-t-researchers-find-ancient-iceman-s-infection-helps-lyme-disease-bone-loss-discovery  They also found that while Otzi the ice-man did not die from complications from Bb, these same researchers feel he might have suffered bone loss as a result of having Lyme Disease.  

“Bone pain has been reported since Lyme disease has been studied, but it’s not something that has been investigated,” said Tara Moriarty.

The findings suggest that it may be wise to monitor bone loss in patients with Lyme Disease.

“We need to know how long the osteopenia lasts after bacterial infection, and whether it progresses to osteoporosis,” added Moriarty.

 

Category:

Lyme, research

Antibiotic Gel Prevents LD?

http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(16)30529-1/abstract

One thousand patients with tick bites were treated with a 10% Azithromycin antibiotic gel within 72 hours of attachment.  None developed Lyme borreliosis.  Of the control group, receiving a placebo, 7 contracted LD.

The gel has to be applied every 12 hours over three days to be effective.

While this is certainly a wonderful tool for our toolbox, consider the story of the little girl who in under six hours developed a facial palsy and the inability to walk or talk after a tick bite.  https://madisonarealymesupportgroup.com/2016/12/07/igenex-presentation/   If it were not for the fast actions of an experienced Lyme literate doctor giving her  injectable antibiotics, the outcome could have been devastating and life changing.

This demonstrates that infection can enter the central nervous system quickly and cause neurological symptoms, which if left untreated can cause damage.  I wish the study followed the people for a year, minimum.  Symptoms with Lyme (borrelia) tend to wax, wane, and migrate, often fooling people into thinking their symptoms are age-related.

Also, it’s important to note that no other infections were tested.  Powassan can be contracted in as little as 15 minutes.  https://madisonarealymesupportgroup.com/2016/02/21/powassan-virus/

Category:

Lyme, research, Ticks, Treatment

Endocarditis – Consider Bartonella

https://www.ncbi.nlm.nih.gov/pubmed/28027277

Multi-Organ Involvement Confounding the Diagnosis of Bartonella henselae Infective Endocarditis in Children with Congenital Heart Disease.   

Ouellette CP, Joshi S, Texter K, Jaggi P.

Abstract
Two children with congenital heart disease status-post surgical correction presented with prolonged constitutional symptoms, hepatosplenomegaly and pancytopenia. Concern for malignancy prompted bone marrow biopsies that were without evidence thereof. In case #1, echocardiography identified a multilobulated vegetation on the conduit valve. In case #2, transthoracic, transesophageal and intracardiac echocardiography were performed and were without evidence of cardiac vegetations, however pulmonic emboli raised concern for infective endocarditis. Both patients underwent surgical resection of the infected material and had histopathologic evidence of infective endocarditis. Further diagnostics identified elevated cytoplasmic anti-neutrophil cytoplasmic antibodies and anti-proteinase 3 antibodies in addition to acute kidney injury with crescentic glomerulonephritis on renal biopsy. Serologic evidence of infection with B. henselae was observed in both patients. These two cases highlight the potential multi-organ involvement that may confound the diagnosis of culture negative infective endocarditis due to B. henselae.
PMID: 28027277 DOI: 10.1097/INF.0000000000001510

For more on Bartonella:

https://madisonarealymesupportgroup.com/2016/02/08/new-bartonella-species/

https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

https://madisonarealymesupportgroup.com/2011/09/25/the-bartonella-checklist-copyrighted-2011-james-schaller-md-version-11/

Category:

Bartonella, Lyme, research

Aluminum, Alzheimer’s, & LD

Although a strong link between aluminum and Alzheimer’s is fairly well known, a recent study confirms it once again.   http://www.sciencedirect.com/science/article/pii/S0946672X16303777  Chris Exley, a member of the research group, states that in his view;

“The findings are unequivocal in their confirmation of a role for aluminum in some if not all Alzheimer’s disease.”http://www.thevaccinereaction.org/2016/12/strong-evidence-linking-aluminum-and-alzheimers/

He also states that those with familial Alzheimer’s have some of the highest levels ever measured that are similar to fatal cases of aluminum-induced encephalopathy in patients also undergoing renal dialysis.

While this information is important for everyone to know, it is particularly import for Lyme/MSIDS (multi systemic infectious disease syndrome – or Lyme with friends) patients as there is a connection between Alzheimer’s and Lyme Disease as well as other infections.
https://madisonarealymesupportgroup.com/2016/11/17/alzheimers-lyme/,
https://madisonarealymesupportgroup.com/2016/06/09/alzheimers-byproduct-of-infection/,


Published on Jun 9, 2016
Dr. Marc Siegel explains on ‘Fox & Friends’ how Kris Kristofferson was diagnosed with Alzheimer’s but actually had Lyme Disease.
(Warning:  the news reporter propagates a myth that “One antibiotic,” prophylactically will cure LD if used early.

The Take Home:  One or two pills of doxycycline will not cure LD.

What is aluminum in and how can we avoid it?

Most Vaccines: (Hepatitis A, B, Hib, DTaP, pneumococcal, Gardasil, and others.) Aluminum is added as an adjuvant that when mixed with a viral or bacterial antigen creates a greater inflammatory immune response which theoretically elicits a higher response of protective antibodies. The problem with this, according to Dr. Mercola, is that vaccines containing inactivated microbes promote antibody-mediated (Th2) immunity which means your body is less prepared to fight infections and more apt to acquire allergies. http://www.thevaccinereaction.org/2016/06/how-aluminum-in-vaccines-affects-your-health/ (Read this well written article about how vaccines work)

According to Dr. Mercola, aluminum injected into a muscle is 100% absorbed by the body, whereas, when ingested it 2-1.5% is absorbed. Also, there seems to be no upper limit in the vaccine program, with the number of aluminum containing vaccines quadrupling over the past 30 years.

The truly frightening aspect of vaccines is that studies have shown that immediately after vaccine injection, macrophages race to eat up the aluminum and the antigen and have the ability to go right through the blood brain barrier into the brain like a Trojan horse – delivering aluminum directly to the brain. This, if you remember, is what Exley warns about – an accumulation of aluminum in the brain – which is a part of the perfect storm of Alzheimer’s. Adding to the perfect storm are infections such as tick borne infections, inflammation (which TBI’s also cause), mitochondrial problems (TBI’s can cause), dysbiosis (think “leaky gut” which TBI’s can cause as well as yeast/fungus due to antibiotic use), premature birth, irradiation, infant formulas, and methamphetamines.

Antiperspirants: Aluminum (chloride, chlorohydrate, zirconium) salts can make up 25% of some antiperspirants, and after a single application about .012% of aluminum may be absorbed. The tally over a life-time of use is huge. http://articles.mercola.com/sites/articles/archive/2010/02/16/aluminum-lurks-in-crystal-deodorants.aspx   Look in your health food store for alternatives or take a pinch of baking soda mixed into water and apply to underarms.

Food supply:
http://articles.mercola.com/sites/articles/archive/2014/03/22/aluminum-toxicity-alzheimers.aspx  Aluminum compounds are often added into foodstuffs as well as by contamination with aluminum equipment. Baking powder, self rising flour, salt, baby formula, coffee creamers, baked goods and processed foods, coloring and caking agents often have aluminum. Read labels. Cooking in aluminum foil increases concentration. Avoid aluminum laminated pouch drinks.

Drugs: antacids, analgesics, anti-diarrheals and additives like magnesium stearate.

Toothpaste: read labels and avoid aluminum oxyhydroxide.

Aluminum Cookware and aluminum espresso makers

Chelating agents to detoxify Aluminum:
http://articles.mercola.com/sites/articles/archive/2014/03/22/aluminum-toxicity-alzheimers.aspx, by Dr. Mercola (March 22, 2014)

• Silica-rich water, such as Fiji water,17 which contains 83 Mg of silica per liter. Research published in 2013 showed that drinking up to one liter of a silicon-rich mineral water daily for 12 weeks effectively excreted aluminum via the urine, without detrimental effects on essential metals such as iron and copper. According to the authors: “We have provided preliminary evidence that over 12 weeks of silicon-rich mineral water therapy the body burden of aluminum fell in individuals with Alzheimer’s disease and, concomitantly, cognitive performance showed clinically relevant improvements in at least 3 out of 15 individuals.”
• Melatonin: Research shows that melatonin has a metal binding role and is a useful supplement in the treatment of neurological disorders in which oxidative stress is involved, which includes Alzheimer’s. Melatonin can travel freely across all cellular barriers, facilitating the removal of toxic metals such as aluminum. It also appears to suppress the oxidative activity of aluminum in your brain.
• Anything that raises your glutathione. Your body synthesizes glutathione from three amino acids: cysteine, glutamate, and glycine. Raw fruits and vegetables, particularly avocado, asparagus, grapefruit, strawberries, orange, tomato, cantaloupe, broccoli, okra, peach, zucchini, and spinach are rich in the precursors glutamate and glycine. Dietary sources of cysteine include eggs, meat, red peppers, garlic, onions, Brussels sprouts, whey protein, and wheat germ. Other helpful treatments for improved glutathione metabolism include:
◦ Exercise: Exercise affects your adenosine triphosphate (ATP) levels needed to help produce glutathione
◦ Optimizing your vitamin D levels through sun exposure: There’s some evidence vitamin D increases intracellular glutathione levels
◦ Epsom salt baths
◦ MSM supplementation
◦ The supplement N-acetyl L-cysteine (NAC) may also be useful. NAC is the rate-limiting nutrient for the formation of the intracellular antioxidant glutathione
• Curcumin: Research suggests that curcumin has a protective effect against aluminum-induced damage by modulating the extent of oxidative stress. It also decreases beta-amyloid plaques associated with Alzheimer’s, delays neuron degradation, chelates metals, decreases microglia formation, and has an overall anti-inflammatory, antioxidant effect. Studies have shown that curcumin can help improve memory in Alzheimer’s patients. There are some contraindications that curcumin is not recommended if you have biliary tract obstruction (as it stimulates bile secretion), gallstones, obstructive jaundice, or acute biliary colic.

Category:

Alzheimer's, Detoxing, Lyme, research