Guest Authors

Friends of Gordon Medical with important things to say.

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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.

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

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U.K. patients describe Myalgic Encephalomyelitis (ME) or (ME/CFS)

*Often called chronic fatigue syndrome (CFS) or ME/CFS


Video by M.E. Action

Patients like these are why Dr. Gordon began research into chronic illness. Find out about our Science in Service of Humanity metabolomics research in CFS/ME. Read our published study, “Metabolic Features of Chronic Fatigue Syndrome,” watch for the next study to be published in the fall of 2017, sign up to participate in new research as a patient or a healthy control, and donate to support the work.

Evidence that CFS truly does deserve all three elements of its name has accumulated over the years but a definitive diagnostic test has remained elusive. Until, perhaps, now. For in this week’s Proceedings of the National Academy of Sciences Robert Naviaux of the University of California, San Diego, and his colleagues published evidence that the metabolisms of those diagnosed with CFS are all changing in the same way. Their data suggest it is this cellular response to CFS-triggering traumas, and not the way the response is set in motion, which should define the illness. They also show that this response produces a chemical signal that might be used for diagnosis.

The Economist

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Elizabeth Large Featured in Press Democrat Article on Lyme Disease

Lucia Montiel, 9, uses a wheelchair to move around her Sonoma coast home since being diagnosed with Lyme disease (John Burgess/The Press Democrat)

Lucia Montiel, 9, uses a wheelchair to move around her Sonoma coast home since being diagnosed with Lyme disease (John Burgess/The Press Democrat)

Lyme disease leaves victims frustrated, searching for answers

Excerpted from an article by MARTIN ESPINOZA
THE PRESS DEMOCRAT | May 18, 2017

Treating these infections is like working in the dark,” said Large, adding that ticks can cause multiple infections. “You’re looking to find the light switch. Hopefully, the more you treat, you start to get a clearer picture of the infections the patient has.

Although tick activity is high in the spring and early summer, ticks are active yearlong, Holbrook ( Sonoma County deputy health officer) said. County officials said Lyme disease is endemic in Sonoma County, with 81 cases between 2005 and 2014, which meets the surveillance case definition under CDC standards.

That figure, however, is a “gross underrepresentation” of the number of Lyme and associated diseases in the county, said Elizabeth Large, a naturopathic physician with Eric Gordon Medical Associates, a Santa Rosa-based practice that specializes in treating chronic disorders such as Lyme disease, arthritis and chronic fatigue syndrome.

Based on the volume of patients seen by her practice, Large said, the number of Lyme infections and associated co-infections during that 10-year period is probably in “the thousands.”

She said determining whether someone has Lyme disease is based on a clinical diagnosis, one that takes into account the totality of patients’ symptoms and their medical history. Earlier this week, Large, who has expertise in pediatric Lyme, saw Luccia for the first time at her medical office in northeast Santa Rosa. Luccia’s grandmother and mother discussed the once-active girl’s medical history, including her bout with the illness and the battery of tests and treatments she’s undergone since February.

“She sometimes can’t tell you what she’s had for breakfast,” Zablocki said.

Luccia was bit in the head by a tick in kindergarten in 2013, but the tick was not properly removed. Its body was removed, but the head was left attached, Zablocki said, adding that the girl was also bit by a tick last summer but that tick was removed.

In most cases, the western blacklegged tick must be attached for 36 to 48 hours before the Lyme disease bacterium can be transmitted, according to the CDC. The disease is caused by the bacterium Borrelia burgdorferi and typical symptoms include fever, headache, fatigue and a characteristic skin rash that looks like a bullseye.

Untreated, the infection can spread to joints, the nervous system and the heart. The CDC says Lyme disease is diagnosed through symptoms, the appearance of such things as a rash and a history of exposure to infected ticks.

After her examination of Luccia, Large said the girl’s varying symptoms pointed to both Lyme and a different infection caused by the bacterium Bartonella, and she changed up the mix of antibiotics.

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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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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…)

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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.

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SAVE MEDICARE – Sign the Petition

At GMA we try to keep our political announcements confined to issues that specifically affect our patient population. This year there are more than usual.

Democarcy for AmericaFrom Democracy for America

Last week it became very clear that Trump and Paul Ryan are planning to privatize and cut Medicare and Medicaid — and it could happen as soon as this spring.

There’s no secret about what specifically Ryan has in mind. He intends to replace traditional Medicare, an efficient program offering guaranteed treatment and featuring rock-bottom administrative costs, with a privatized program. Seniors would get a federal voucher to help them pay premiums charged by commercial insurance plans. Ryan calls this system “premium support.”

But since the value of the vouchers would rise at less than the rate of healthcare inflation, and the costs of private insurance typically rise faster than those of Medicare, an ever-larger share of healthcare costs would land on seniors’ shoulders. In 2011, when Ryan first proposed this change, the Kaiser Family Foundation calculated that by 2022, healthcare spending would consume roughly half of the typical 65-year-old’s Social Security check, compared to only 22% under the existing Medicare system.

Paul Ryan is determined to gut Medicare. This time he might succeedLA Times

[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…]

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More from Dr. Naviaux on metabolics and Chronic Fatigue Syndrome

Science in Service of HumanityDr. Naviaux has responded to some comments on the groundbreaking paper, “Metabolic Features of Chronic Fatigue Syndrome”.

In this response he addresses the need for metabolic studies in other disease groups, whether metabolic studies determine the initial cause of sysmptoms, and how dauer states relate to what is seen in CFS.

We thank Vogt et al. for their comments (1). We respond to their three points in order. First, we are aware of the need to extend future metabolomics studies to include other disease groups. We stated this fact in the discussion of ref. 2 and are validating the results in independent cohorts. The detailed biochemical phenotype or signature that we found provides a first glimpse at a previously hidden biology. For example, disturbances in sphingolipid metabolism have important implications for immunobiology and neuroendocrine regulation relevant to myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) (3). Sphingolipids are important mediators of the cell danger response (CDR) (4), and the CDR is an important regulator of the behavioral and functional changes produced by infection, and associated with sickness behavior (5). The biochemical phenotype of ME/CFS is distinct from other diseases that Vogt et al. (1) named. For example, in heart failure, metabolomics shows that long chain acyl-carnitines are increased (6), but these long chain acyl-carnitines were not changed in ME/CFS (2). In our view, chemistry and metabolism underlie all aspects of human biology. Our studies show that metabolomics can be used as a new lens to reveal unexpected biology that was invisible before…

Robert Naviaux, et all

Read full response.
Read the letter the response was based on.

PARTICIPATE in metabolomics research at SISOH.

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Press Democrat: Santa Rosa doctor’s study offers new insight into chronic fatigue syndrome

GUY KOVNER
THE PRESS DEMOCRAT | September 21, 2016

Eric Gordon MDA new study initiated by (Eric) Gordon and including Harrison as one of the subjects could provide that breakthrough.

The study, published last month, detected a “chemical signature” in the blood of chronic fatigue syndrome patients, establishing for the first time that chronic fatigue syndrome is an “objective metabolic disorder,” said co-author Dr. Robert Naviaux, the UC San Diego researcher who identified the blood chemical anomalies associated with the condition.

Gordon is a co-author of the study, and most of the patients in the study came from his practice.

Read PD Article

Read Full Study Paper