Both our own, and research done by others. We participate in research into the cause and treatment of chronic illness.

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New Study Finds Lyme Bacteria Survive a 28-day Course of Antibiotics When Treated Four Months After Infection by Tick Bite

Risk of Tick Bites in Tall Grass

Risk of Tick Bites in Tall Grass

All subjects treated with antibiotics were found to have some level of infection 7–12 months post treatment.

Despite testing negative by antibody tests for Lyme disease, two of 10 subjects were still infected with Lyme bacteria in heart and bladder.

Lyme bacteria which persist are still viable.

Portola Valley, California, Dec. 13, 2017 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced results of two papers published in the peer-reviewed journals PLOS ONE (read full paper) and American Journal of Pathology (read full paper), that seem to support claims of lingering symptoms reported by many patients who have already received antibiotic treatment for the disease.

Based on a single, extensive study of Lyme disease designed by Tulane University researchers, the study employed multiple methods to evaluate the presence of Borrelia burgdorferi spirochetes, the bacteria that cause Lyme disease, before and after antibiotic treatment in primates. The study also measured the antibody immune response to the bacteria both pre- and post- treatment, as this is how current diagnostics typically evaluate Lyme disease in humans.

The data show that living B. burgdorferi spirochetes were found in ticks that fed upon the primates and in multiple organs after treatment with 28 days of oral doxycycline. The results also indicated that the immune response to the bacteria varied widely in both treated and untreated subjects.

“It is apparent from these data that B. burgdorferi bacteria, which have had time to adapt to their host, have the ability to escape immune recognition, tolerate the antibiotic doxycycline and invade vital organs such as the brain and heart,” said lead author Monica Embers, PhD, assistant professor of microbiology and immunology at Tulane University School of Medicine.

“In this study, we were able to observe the existence of microscopic disease and low numbers of bacteria, which would be difficult to see in humans but could possibly be the cause of the variable and nonspecific symptoms that are characteristic of post-treatment Lyme disease syndrome. Although current antibiotic regimens may cure most patients who are treated early, if the infection is allowed to progress, the 28-day treatment may be insufficient, based on these findings,” Embers said.

The findings also demonstrated:

  • All subjects treated with antibiotics were found to have some level of infection 7-12 months post treatment.
  • Despite testing negative by antibody tests for Lyme disease, two of 10 subjects were still infected with Lyme bacteria in heart and bladder.
  • Lyme bacteria which persist are still viable.

To better elucidate previous animal studies demonstrating that some B. burgdorferi bacteria survive antibiotics, the study explored Lyme disease infection in rhesus macaque primates treated with antibiotics and a control group who were also infected but not treated. This species has been shown to demonstrate a progression of Lyme disease most similar to humans, particularly related to erythema migrans, carditis, arthritis, and neuropathy of the peripheral and central nervous systems.

“Clearly, some medical practices governing diagnosis and treatment of Lyme disease should be reconsidered in light of this study. This study shows that we must reevaluate the current paradigm of antibody response tests for diagnosis and move away from the one size fits all approach to Lyme treatment,” said Wendy Adams, Research Grant Director, Bay Area Lyme Foundation. “Every day, patients with Lyme disease are told their symptoms cannot be caused by Lyme, because they test negative on antibody tests or because they have received a single course of antibiotics. More research and funding are imperative.”

In the study, ticks carrying B. burgdorferi spirochetes fed on ten primates. Four months post infection, half of the primates (five) received the antibiotic doxycycline orally for 28 days at a proportional dose to that used in human treatment. Five subjects were treated with placebo and all ten were evaluated by more than five different diagnostic methods to characterize any remaining infection. The researchers used several important techniques, including xenodiagnoses, to determine if the spirochete bacteria persisted.

The results show:

Few subjects displayed a rash. Although all subjects were infected, only one of the 10 displayed a rash with central clearing, the classical “bulls-eye” rash. The subject that developed this rash, interestingly, never mounted an immune response to five borrelia antigens throughout the study period, prior to and following treatment.

Organs may be infected even if antibody tests are negative. One subject which tested negative for B. burgdorferi by skin biopsy cultures, PCR and in vivo cultures, was found to have B. burgdorferi infecting the heart. Another untreated subject, who was ultimately shown to have residual Lyme bacteria in the bladder, showed a decrease in immune response over the course of infection, with a negative xenodiagnosis test in the late stage, which would signal that the animal self-cured.

Intact spirochetes were found in three of five treated and four of five untreated subjects based on xenodiagnosis results 12 months after the tick bite.

Immune responses to B. burgdorferi varied greatly post-treatment, with one subjects antibody levels dropping to pre-bite levels for three antigens while another subject experienced elevated antibodies for the same antigens throughout the study period. This is significant because it demonstrates that subjects infected with the same strain of B. burgdorferi may have different immune responses to the same antigen. And, because humans, like primates, are genetically diverse, it underscores that testing antibody responses may be inherently unreliable as a singular diagnostic modality for Lyme disease.

Widespread and variable microscopic disease was observed in all infected subjects, despite antibiotic treatment. Compared to uninfected subjects of the same age, infected subjects in this study (treated and untreated) demonstrated Inflammation in and around the heart, in skeletal muscles, joints, and the protective sheath that covers the brain, and near peripheral nerves.
Rare, but intact B. burgdorferi spirochetes were found in the tissues of both the treated and untreated subjects. In two subjects treated with doxycycline, multiple Lyme bacteria were observed in the brain tissue. Others organs in which the spirochetes were observed included the heart, joints, bladder, skeletal muscle and adjacent to peripheral nerves.

Variable manifestations, diverse seroreactivity and post-treatment persistence in non-human primates exposed to Borrelia burgdorferi by tick feeding

Late Disseminated Lyme Disease: Associated Pathology and Spirochete Persistence Posttreatment in Rhesus Macaques

About Lyme disease
One of the most common infectious diseases in the country, Lyme disease is a potentially disabling infection caused by bacteria transmitted through the bite of an infected tick to people and pets. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and unreliable diagnostic tests. There are about 329,000 new cases of Lyme disease each year, according to statistics released in 2015 by the CDC. As a result of the difficulty in diagnosing and treating Lyme disease, as many as one million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates.

About Bay Area Lyme Foundation
Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is the leading public foundation sponsor of innovative Lyme disease research in the US. A 501c3 non-profit organization based in Silicon Valley, Bay Area Lyme collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. A pivotal donation from The Laure L STEM Fund covers all overhead costs and allows for 100% of all donor contributions to Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.

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The Stony Brook Chronic Illness Project – Patient Survey

We are providing the following information as it may be of interest to some of our patients. They are particularly interested in patients with Mastocytosis or other Mast Cell disorders, as well as other types of chronic illness. We are not affiliated with the study, though we will be interested in the outcome.

DO YOU HAVE A CHRONIC ILLNESS?

Scientists at Stony Brook University are conducting one of the largest, most important research studies ever undertaken to understand people’s experiences with chronic illness.

The knowledge we gain from this study will help scientists and physicians to improve care and develop effective treatments.
This anonymous, online questionnaire welcomes any adult who has a rare or non-rare chronic illness to participate. The questionnaire is voluntary and takes approximately 30 to 60 minutes to complete.

Please click on the link below if you are interested in participating!

View Questionnaire Here >

Thank you for your contribution to our knowledge about chronic illness!

Jennifer Nicoloro-SantaBarbara, M.S.W., M.A., Project Director and
Marci Lobel, Ph.D., Principal Investigator and Professor of Psychology
Stony Brook University
ChronicIllnessProject@stonybrook.edu
Approved: May 15, 2017
Expiration Date: May 14, 2018

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Researchers Studying Century-Old Drug in Potential New Approach to Autism

Excerpts from article originally posted May 26, 2017 | Scott LaFee and Heather Buschman, PhD in Newsroom

Robert Naviaux, MD PhDIn a small, randomized Phase I/II clinical trial (SAT1), researchers at University of California San Diego School of Medicine say a 100-year-old drug called suramin, originally developed to treat African sleeping sickness, was safely administered to children with autism spectrum disorder (ASD), who subsequently displayed measurable, but transient, improvement in core symptoms of autism.

“The purpose of CDR is to help protect the cell and jump-start the healing process,” said Naviaux, by essentially causing the cell to harden its membranes, cease interaction with neighbors and withdraw within itself until the danger has passed.

“But sometimes CDR gets stuck,” Naviaux said. “This prevents completion of the natural healing cycle and can permanently alter the way the cell responds to the world. When this happens, cells behave as if they are still injured or in imminent danger, even though the original cause of the injury or threat has passed.”

At the molecular level, cellular homeostasis or equilibrium is altered, creating an abnormal cellular response that leads to chronic disease. “When this happens during early child development,” said Naviaux, “it causes autism and many other chronic childhood disorders.”

Suramin works by inhibiting the signaling function of adenosine triphosphate (ATP), a nucleotide or small molecule produced by cellular mitochondria and released from the cell as a danger signal. When CDR is activated, the effect of extracellular ATP is similar to a warning siren that never stops. Suramin inhibits the binding of ATP and similar molecules to key purinergic receptors, according to Naviaux. It silences the siren, “signaling the cellular war is over, the danger has passed and cells can return to ‘peacetime’ jobs like normal neurodevelopment, growth and healing.”

Robert Naviaux, MD, PhD

All five boys who received the suramin infusion displayed improvements in language and social behavior, restricted or repetitive behaviors and coping skills. Assessment of improvements was based upon observational examinations and interviews using standardized tests and questionnaires, such as the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2), the Expressive One Word Picture Vocabulary Testing (EOWPWT), the Aberrant Behavior Checklist (ABC), the Autism Treatment Evaluation Checklist (ATEC), the Repetitive Behavior Questionnaire (RBQ) and the Clinical Global Impression (CGI) questionnaire. To minimize misinterpretation of natural day-to-day variations in symptoms, parents were asked to mark a symptom as changed in the 6-week CGI only if the symptom lasted for at least one week.

Read full article

Low-dose suramin in autism spectrum disorder: a small, phase I/II, randomized clinical trial

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Update on SISOH Metabolomics Research 4/6/17

Eric Gordon MD and Wayne Anderson ND at SISOH

Eric Gordon MD and Wayne Anderson ND – photo courtesy of the Press Democrat, Christopher Chung

From Eric Gordon, MD

Many of you are probably wondering where we are with the SISOH research. Good news is that Kelly Fox, previously one of the Medical Assistants at GMA, has come on as a full-time Research Coordinator! Kelly is very experienced in working with chronically ill patients, and we think you will find her a delight to work with.

Our ongoing CFS/ME studies are group studies working to develop an accepted group of biomarkers to define people with CFS/ME. We have enrolled all the patients in the replication study with Dr. Cheney, and hope to publish that in fall of 2017. [Read more…]

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Announcement For Gathering Participants For Study Of The Needs Of Persons With Environmental Sensitivities

Women with Environmental Sensitivities

The James Madison University Environmental Sensitivities Research Team is inviting adults aged 21 and over who have experienced environmental sensitivities (chemical and/or electrical) to participate in on online study of how their needs are being met as they grow older with sensitivities.

If you are interested in participating, please click on the link below to see the consent form and learn more about the study. If you are unable to complete the survey online, you are welcome to request a hard copy that can be mailed to you. To request a hard copy please email gibsonpr@jmu.edu or call 540-568-6195 and leave a message with you name (clearly stated) and your complete address.

Thank you ahead to everyone who helps me with this study.

To take the survey online, copy this url into your browser:

http://jmu.co1.qualtrics.com/SE/?SID=SV_4YGd1uBrKkxx8nr

Pamela Gibson, Ph.D., Professor of Psychology
James Madison University, MSC 7704
Harrisonburg, VA 22807
540-568-6195

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AIMS Surveys Now Going Out in Batches

Genes are ancestor based. Metabolites are how you are doing now.

Science in Service of HumanityIf you are curious to be updated on our research please check the Research News section on the SISOH website. This is the most up to date information. You can subscribe to the Sisoh blog by inputting your email in the subscription box on the sidebar.

We are sending out the Analyzing Individual Metabolomics Study (AIMS) survey emails in small batches. If you have signed up online or spoken to research coordinator Asha Baxter you are on the list for AIMS. Please be patient. *If you have a gmail account please check your spam or promotions email for our email.

Completion of the survey will add you to our list of potential study participants. Once we have enough participants for your age group, you will be given instructions on how to formally enroll in the study. All study participants will receive study updates and overall study results. Additionally, a metabolomic report of personal metabolomic results will be sent to a participant’s physician.

Please Donate to help us find answers to Chronic Illness. Every dollar counts. Donations to our non-profit GMRC are tax-deductible.

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Help Set the Lyme Research Agenda with Lymedisease.org Survey

Lyme Research AgendaToday, 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.

Take the Survey

Read more at Lyme Policy Wonk

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Health Rising – Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome (ME/CFS)

Health Rising
 
 
by Cort Johnson | Dec 13, 2016
 

Personalized treatment plans will require addressing the core metabolic abnormalities found in most ME/CFS patients plus the individual metabolic issues found of each patient.

Treatments that work for a time and then stop could be the result of not addressing all the metabolic needs of an individual.

Cort Johnson – “Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome (ME/CFS)”

The day after my brother’s wedding I shot down to San Diego to meet Rachel Riggs and a doctor with ME/CFS. Rachel, who has turned into a volunteer patient coordinator had enrolled me in Naviaux’s next metabolomics study. (Resistance, I quickly surmised, was futile – not that I was putting up any.) Rachel chatted away on the phone with another potential participant as we drove down to Naviaux’s lab. I was one of the last to give blood. editor’s note: Cort actualy enrolled in the 2nd Metabolomics study. SISOH is now recruiting for a 3rd study.

After I gave a surprising small amount of blood we tromped down the hall to meet with Dr. Naviaux in his workroom, the industrial looking pipes overhead bringing back memories of college labs in the past. Ducking into one lab Rachel showed me two $500,000 dollar mass spectometer machines each the size of a large microwave.

Gracious, as always, Dr. Naviaux offered us some coffee or tea. A bit spacey from my fast I tried out some green tea – at which point my nose immediately stopped up. At the first sound of my sniffles Naviaux turned to me and said we would have to note that for the study. (No one with a cold is allowed in the study.) Those sniffles cleared up later. (Dr. Naviaux, if you read this I promise it was from the tea…)

Read More

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MEDSCAPE – Biomarker Research Advances in ‘Chronic Fatigue Syndrome’

Science in Service of HumanityMiriam E. Tucker
Medscape – November 08, 2016

In addition, in an “unbiased” metabolomics study using mass spectrometry, metabolites that differed most between 17 patients with ME/CFS and 15 healthy participants involved pathways harvesting energy from glucose, fatty acids, and amino acids.

The finding, suggestive of a general hypometabolic state, corresponds to another recent study published in the Proceedings of the National Academy of Sciences. The specific metabolites differed between the two studies, but, Dr Komaroff said, “it’s consistent. It says that some types of metabolic pathways are downregulated in this illness, whereas others like those involving immunity and inflammation are upregulated.”

FORT LAUDERDALE, FL — New research adds to growing evidence that the illness commonly known as chronic fatigue syndrome is biologically based, researchers report here at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME) research and clinical conference. Some of the abnormalities identified suggest potential clinical diagnostic tests and targeted treatments.

The condition, now called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) by US government bodies, has long confounded the medical community because, although patients may be severely debilitated and exhibit numerous abnormal physical findings, no specific biomarker has been found to conclusively make the diagnosis.

Read More

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MyLymeData 3-month follow-up survey launched

MyLymeData

From Lorraine Johnson, JD, MBA at LYMEPOLICYWONK

Originally published on LymePolicyWonk on November 15, 2017

Last year, LymeDisease.org launched MyLymeData–a national patient-centered big data project. Today it is the largest study of Lyme patients ever conducted, with over 6,000 currently enrolled. Our goal is 10,000 participants. MyLymeData allows patients to pool their data to help find a cure.

This week we are rolling out MyLymeData’s three-month follow-up survey, which tracks patient symptoms, treatments, treatment response, and functional status on a quarterly basis. This survey holds the key to questions patients care about. What treatments work? Why do they work for some people and not others? [Read more…]