Madison Area Lyme Support Group Meeting
When: Saturday December 1, 2018
Time: 2:30pm-4:30pm
Where: East Madison Police Station Community Room, 809 S Thompson Drive, Madison, WI
What: Support. Bring ideas and questions.
December 2018 Meeting Reminder
November 26, 2018
https://www.cnn.com/2018/11/14/health/tick-report-hhs-bn/index.html?utm_campaign=Nov+17+RMD+newsletter%3A+Proof+that+Lyme+is+Polymicrobial+%5B (News Video within Link – approx 6 Min)
Exploding tick population — and illnesses they bring — worries government
Source: CNN Business
On Wednesday, a congressional advisory committee sounded the alarm on Lyme and other emerging tick-related illnesses saying they have become “a serious and growing threat to public health.” The finding, presented in a report to congress, recommends surveillance, prevention, diagnosis and treatment measures for tackling the problem.
At least 20 known medical conditions can result from tick bites; the most common, Lyme disease, affects an estimated 300,000 Americans each year. Meanwhile, doctors and researchers continue to discover new illnesses linked to the crawling bugs.
The committee, known as the Tick-Borne Disease Working Group, was established under the 21st Century Cures Act (2016) and is tasked with proposing how to rein in this public health problem.
“As tick populations continue to grow and infected ticks expand geographically, the threat to human health intensifies,” the working group wrote. To highlight the necessity to act, the report includes stories from patients, including Ruben Lee Sims.
‘Untreated patients can lose everything’
Sims, a Vietnam veteran who in 1977 was recognized by the US Air Force as the “top enlisted management analyst of the year,” had his life derailed several years later by tick bites.
Ruben Lee Sims is a Lyme disease advocate.
Unable to diagnose Lyme disease, the military discharged Sims in 1984, labeling him a hypochondriac whose pain was caused by psychological factors. A year later, a non-military doctor also failed to deliver a diagnosis. Though the doctor suspected Lyme disease, Sims had never traveled to New England, where the disease is prevalent, so the tick-borne disease was crossed off the list of possibilities.
“I was misdiagnosed for over three decades and left untreated for Lyme disease,” Sims told the report’s authors.
Today, that’s no longer true. Better equipped to diagnose tick-borne disease, the VA has confirmed Sims’ pain as a symptom of Lyme disease, and with appropriate treatment, he no longer has symptoms.
“Untreated patients can lose everything, as I did, and become part of the unemployed, under-employed, disabled, and homeless populations,” Sims said in the report.
These days, he shares his story to help others who may be affected by tick-borne illnesses.
Most Lyme patients who are treated early can fully recover, yet up to 20% experience persistent symptoms — some disabling. Immediate symptoms include fever, chills, headache, fatigue, muscle and joint aches, swollen lymph nodes and a distinctive ring rash. Episodes of dizziness or shortness of breath, inflammation of the brain and spinal cord, and shooting pains in the hands or feet are among the longer-term symptoms in patients with chronic illness.
The spread of Lyme disease
Lyme disease cases have doubled since 2004, according to the report. Meanwhile, its geographic prevalence has grown: The number of counties considered to have high incidence of the disease has increased by more than 300% in the northeastern states and by nearly 250% in North Central states, the report states.
“The geographic range of Lyme disease cases has expanded since its first appearance in Lyme, Connecticut, in 1975 and has consistently spread northward, southward, and westward,” the report says.
The working group suggests this spread may be due, at least in part, “to ecological changes taking place in North America since the middle of the 20th century, including habitat and climate changes.”
Though less common on the West coast, Lyme disease is an important concern there, as are other diseases that result from tick bites, the report states. Despite hundreds of thousands of estimated cases, only about 35,000 are reported each year to the US Centers for Disease Control and Prevention.
Lyme disease is transmitted by infected deer ticks. Infected blacklegged ticks, Western blacklegged ticks and lone star ticks also frequently transmit illness in the United States.
Tick-borne diseases can be difficult to diagnose. Tests are not always accurate, and health care providers may not know how to use them. Additionally, patients may have not just one but two or more tick-borne illnesses at the same time.
The Tick-Borne Disease Working Group’s recommendations include improving early and accurate diagnosis and treatment, strengthening national surveillance and developing new treatment options for treating acute and persistent illness.
“For decades, tick-borne diseases have increased at an alarming rate,” the committee concluded. “The continued spread of ticks, the discovery of new tick-borne pathogens, and the spreading outbreak of human disease is a near certainty.”
_________________
**Comment**
- Stating emphatically that being misdiagnosed is “no longer true,” is a flat-out inaccuracy. People continue to be misdiagnosed at an alarming rate. They are also still told they are making it all up or just wanting attention. The bullying and abuse of patients continues on unabated and MUST END. Current CDC 2-tiered testing misses half of all cases.
- As to 20% experiencing persistent symptoms – experts truly have NO IDEA at all regarding numbers. They are completely taking a stab in the dark. If they can go from 30,000 cases of Lyme a year to over 400,000, we really can’t trust them on numbers at all. Inaccurate testing doesn’t help either.
- The symptoms listed in this article are just the tip of the ice-berg. Some people’s main symptoms are psychological – which didn’t even get a mention. This is not just a disease of aches and pains – although there’s plenty of that too!
- The Working Group needs to cease and desist on the climate change issue. It’s been debunked entirely by a PhD independent tick researcher: https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/. Please know that the any further research with the moniker climate change will NOT help patients one iota.
- Regarding the news video, I write about Kevin Esvelt’s GMO Mice here: https://madisonarealymesupportgroup.com/2016/06/21/first-frankenbugs-now-frankinmice/
https://madisonarealymesupportgroup.com/2018/10/11/new-england-scientists-explore-new-method-for-eradicating-lyme-disease/ This article also explains CRISPR, the method used to genetically modify the mice.
Another point to stress is that the CRISPR gene-editing technology (tinkering with genes) has been shown to create unintended mutations. http://articles.mercola.com/sites/articles/archive/2017/06/13/crispr-gene-editing-dangers.aspx? This article shows 100 deletions and insertions and more than 1,500 unintended single-nucleotide mutations occurred .
OOPS.
Geneticist and virologist Jonathan Latham, Executive Director of the Bioscience Resource Project and editor of Independent Science News, has spoken out about the fallacy of industry talking points in the past.
“So far, it is technically not possible to make a single (and only a single) genetic change to a genome using CRISPR and be sure one has done so,” Latham reportedly explained. This feat may not even be possible biologically; one small change to genome can inevitably lead to a host of other, unanticipated changes. https://www.naturalnews.com/2018-06-14-scientists-warn-genetic-editing-of-humans-with-crispr-technology-may-lead-to-cancer.html#
In fact, experts say that CRISPR could cause hundreds of unintended DNA alterations.
While it all seems neat and tidy on paper and in a cool colored video, what happens in the wild could be an entirely different matter. Releasing GMO mosquitoes to supposedly eradicate Zika has shown many undesirable effects. I wrote about that when it all went down: https://madisonarealymesupportgroup.com/2018/02/12/wolbachia-laced-mosquitoes-being-released-why-lyme-msids-patients-might-be-negatively-affected/ (This link shows an important dog study you need to read about as well) Take away: in dogs, Wolbachia released into the blood stream causes wide-spread inflammation, something Lyme/MSIDS patients already struggle with.
Then there’s the issue of pathogen enhancement.
According to a study by Penn State, mosquitoes infected with Wolbachia are more likely to become infected with West Nile – which will then be transmitted to humans.
“This is the first study to demonstrate that Wolbachia can enhance a human pathogen in a mosquito,“ one researcher said. “The results suggest that caution should be used when releasing Wolbachia-infected mosquitoes into nature to control vector-borne diseases of humans.” “Multiple studies suggest that Wolbachia may enhance some Plasmodium parasites in mosquitoes, thus increasing the frequency of malaria transmission to rodents and birds,” he said. https://www.sciencedaily.com/releases/2014/07/140710141628.htm
This article states CRISPR has the potential to cause cancer in a whole generation of humans: https://www.naturalnews.com/2018-06-14-scientists-warn-genetic-editing-of-humans-with-crispr-technology-may-lead-to-cancer.html# (Excerpt below)
Emma Haapaniemi, a co-author of the Karolinska Institute study, explained why this is such a concerning find.
“By picking cells that have successfully repaired the damaged gene we intended to fix, we might inadvertently also pick cells without functional p53.” Dysfunctional p53 is a major cancer risk; nearly half of ovarian and colorectal cancers can be connected to a disruption in p53. Many other types of cancer, like lung, pancreatic, stomach, liver and breast cancers, can also be attributed to p53 problems.
“If transplanted into a patient, as in gene therapy for inherited diseases, such cells could give rise to cancer, raising concerns for the safety of CRISPR-based gene therapies,” Haapaniemi added.
On top of those difficulties, scientists do not know how all of this will affect ecosystems and are unclear if the gene drives could spread to closely related species.
Noam Prywes, PhD candidate in chemistry at Harvard, claims that CRISPR/Cas-9-based gene drives will
“add a twist – introducing one gene drive after another to correct unforeseen consequences as they are discovered,” and that “decisions by researchers would become permanently written into the genomes of entire wild populations.”
He also adds that there are alternative ways to wipe out local populations of mosquitoes carrying disease that are much safer.
In this same vein, David Burwitz of Tel Aviv University, feels that gene drive research should be classified to prevent weapon development, and he’s not alone.
http://nextstageprep.com/gene-drivesthis-next-weapon-mass-destruction/ In theory, a terrorist could create a handful of insects with a gene for making a toxin, and power it with a gene drive. Pretty soon, all of these insects would make the toxin, and every insect bite would be lethal. However, according to Austin Burt, who proposed the theoretical method for making gene drives, the gene drives only work in sexually reproducing species, unlike the vast majority of genetically engineered microbes which produce asexually and they’ve only been shown to work for one generation – so far.
According to a study by an independent Canadian tick researcher, there’s been an inordinate amount of stress placed on mice, when there are plenty of other reservoirs: https://madisonarealymesupportgroup.com/2018/08/13/study-shows-lyme-not-propelled-by-climate-change/ Scott has shown that there are established populations of deer ticks in Manitoba as well as in insular, hyper-endemic Corkscrew Island, yet both are devoid of white-footed mice. He points out that there are numerous reservoir hosts that must be considered including other mammals, birds, and reptiles. For decades we’ve been told it’s the mice. Yet a real problem in the West and South are reptiles like skinks and lizards: https://madisonarealymesupportgroup.com/2017/12/03/biologists-at-sf-state-dig-into-ticks-and-ld/, https://madisonarealymesupportgroup.com/2018/06/25/the-confounding-geography-of-lyme-disease-in-the-u-s/
Disinformation From IDSA President Cynthia Sears – Please Write Your Letter Today and Be Heard
November 24, 2018
More disinformation from IDSA President Cynthia Sears
Carl Tuttle
Hudson, NH
NOV 22, 2018 —
Please see the letter below addressed to U.S. Health Secretary Alex Azar, II correcting the misinformation he received from IDSA President Cynthia Sears. Cc: to the TBD Working Group.
The disinformation/propaganda regarding Lyme disease is rampant throughout all agencies as the IDSA continues to promote the 30 year-old dogma.
If you agree with what is presented below send an email/letter of your own to Secretary Azar asking to remove the management of Lyme disease from the U.S. Centers for Disease Control. The CDC has failed miserably and if the Lyme disease plague is left in their control we will have another decade of unimaginable pain and suffering.
Thousands of letters should drive home the point.
Letter to U.S. Health Secretary Alex Azar, II
——– Original Message ———-
From: Carl Tuttle <runagain@comcast.net>
To: Alex.Azar@HHS.GOV
Cc: tickbornedisease@hhs.gov, csears@jhmi.edu, jaucott2@jhmi.edu
Date: November 21, 2018 at 11:24 AM
Subject: Letter sent by IDSA president, Cynthia Sears, MD
November 21, 2018
The Honorable Alex Azar, II
Secretary
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, DC 20201
Dear Secretary Azar,
I understand that you are in receipt of a letter sent to you by IDSA president, Cynthia Sears, MD, FIDSA regarding concerns over the recommendations from the Tick Borne Disease Working Group. (See attachment)
https://www.dropbox.com/s/pnpzz5x7421m2b0/IDSAComments%20TBDWG.pdf?dl=0
Dr. Sears should be aware that untreated streptococcal pharyngitis progresses to rheumatic fever, causing irreversible heart damage. Untreated syphilis leads to progressive disability and dementia, and untreated HIV infection progresses to AIDS with significant disability and death. What happens to the patient with Lyme disease who goes months, years or decades before diagnosis?
Dr. Neil Spector’s serologic tests were repeatedly negative missing his Lyme disease which led to the destruction of his heart requiring a transplant. https://www.bayarealyme.org/blog/story/neil-spector/
And I’m sure you have seen the lawsuit in the Supreme Court of Pennsylvania regarding a misdiagnosis of Multiple Sclerosis due to four negative serology results for Lyme disease. http://www.pacourts.us/assets/opinions/Supreme/out/Majority%20Opinion%20%20ReversedVacatedRemanded%20%2010373940443079867.pdf?cb=1
These are just two examples of how faulty/misleading antibody tests can alter a person’s life; proof that we are dealing with a very serious life-altering/life-threatening infection when left untreated. Dr. Sears does not discuss the consequences of untreated Lyme disease in her viewpoint.
Additional statements from Cynthia Sears, MD:
Epidemiology and Ecology Chapter
Statement# 1 “According to the Centers for Disease Control and Prevention, since 2004, there have been seven new human tick-borne pathogens discovered, and it is necessary to characterize these novel infections as quickly and accurately as possible.”
There may be a species of Borrellia yet to be “characterized” in the Hudson Valley, NY area as reported by Dr. Sin Lee of Milford Molecular Diagnostics. In August of 2013 the CDC provided 32 blind coded serum samples to Milford Laboratory Services for the purpose of evaluating the accuracy of a new diagnostic test for Lyme disease; “Nested PCR and Sequencing.”
New species of Borrellia in the Hudson Valley, NY area?
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/15557618
Excerpt: “Dr. Gary Wormser of New York Medical College provided the serum samples where this novel Borrelia was isolated. Not only was a novel Borrelia discovered but there was a second pathogen (Borrelia miyamotoi) found in one sample which was 2-tier serology-negative. In two of the samples containing Borrelia burgdorferi, one sample was negative and one positive for 2-tier serology making it obvious that current testing for Lyme disease has serious flaws.
Dr. Lee’s publication:
Detection of Borreliae in Archived Sera from Patients with Clinically Suspect Lyme Disease
http://www.mdpi.com/1422-0067/15/3/4284
“The #9 patient [Hudson Valley, NY] was diagnosed with “neurologic Lyme disease” and had been treated before the serum sample was drawn. Direct DNA sequencing of the nested PCR amplicon confirmed that the sequence of the amplicon is that of a novel borrelia in the relapsing fever group….”
I would have to disagree with Dr. Sears’ assessment that the CDC is “characterizing these novel infections as quickly and accurately as possible.” To my knowledge there was no follow-up to Dr. Lee’s discovery five years ago.
Statement# 2 “While IDSA acknowledges that the CDC case definition for Lyme disease is intended for use as an epidemiological tool, it is incorrect to promulgate the notion that the components of the surveillance definition should not be used for clinical diagnosis.”
The restrictive case definition of two out of three IgM Western blot bands and five out of ten IgG bands set forth at the 1994 Dearborn Conference was strictly established for surveillance purposes only but has caused untold pain and suffering for decades as patients who do not meet these strict criteria are often told they do not have Lyme disease. Please see the attached letter from Dr. David Volkman addressed to past CDC director Thomas Frieden, MD. asking to revise the restrictive case definition.
https://www.dropbox.com/s/sl5x3gzguowpj6n/Volkman%20letter%20to%20Frieden.doc?dl=0
Causes and Treatment Chapter
Statement# 3 “Conversely, there is not a pressing need for additional federally supported research on antibiotic treatment for Lyme disease.”
The following pilot study recently identified chronic Lyme disease in twelve patients from Canada. All of these patients were culture positive for infection (genital secretions, skin and blood) even after multiple years on antibiotics so there was no relief from current antimicrobials. Some of these patients had taken as many as eleven different types of antibiotics.
Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease
http://www.mdpi.com/2227-9032/6/2/33
A PubMed.gov search will uncover hundreds of papers reporting persistent Borrelia infection. An astute fifth-grade student with access to PubMed would have no trouble finding these published studies.
For example:
Seronegative Chronic Relapsing Neuroborreliosis.
https://www.ncbi.nlm.nih.gov/pubmed/7796837
Department of Neurology, and Division of Infectious Diseases, Albert Einstein College of Medicine, and Department of Neurology, State University of New York at Stony Brook, New York, NY., USA
Abstract
We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen.
____________________
Mr. Secretary, we have an incurable disease spreading across America deceitfully misclassified as a low-risk and non-urgent health issue which is destroying lives, ending careers, causing death and disability while leaving victims in financial ruin.
Public outcry has been ignored for nearly four decades while the Centers for Disease Control sat on evidence that this infection was not easily treated with a one-size-fits-all treatment approach as dictated by the Infectious Diseases Society of America. That evidence is identified in the attached letter to Brenda Fitzgerald, MD with supporting documentation in the form of laboratory tests results from Fort Collins, CO and autopsy reports identifying the destructive nature of an infection capable of death and disability. I respectfully ask that you read that letter now.
https://www.dropbox.com/s/xaul84dqmqgbre0/Brenda%20Fitzgerald%20MD%20Director%20CDC.docx?dl=0
Diagnosis Chapter
Statement# 4 “The NIH and CDC initiated a Serum Reference repository in 2008 and, at the end of 2011, began making standardized Lyme disease cases with serum samples available to the scientific community on a broad basis for testing and comparison of new diagnostic tests.”
How can the CDC use these serum samples from their serum repository to gauge the accuracy of newly developed Lyme disease test kits when they don’t even know what they contain? (As described in Statement#1)
Statement# 5 “CDC is also developing next-generation direct diagnostic tests (e.g., biomarkers) to improve upon current serological tests. However, the development, validation and commercial distribution of new tests can take years and millions of dollars.”
Direct detection laboratory methods for the early detection of Lyme disease i.e.; DNA/Sanger Sequencing, NIST which has been “shown to detect the disease near the time of infection” but has been put on the shelf or the new PHELIX Phage based PCR all offer solutions that shouldn’t take years to develop.
As this runaway plague destroys countless lives nationwide we don’t have years to wait for accurate diagnostics especially if the delay is due to focus on metabolomics which CDC employees hold patents. The 1980 Bayh–Dole Act or Patent and Trademark Law Amendments Act (United States legislation dealing with intellectual property arising from federal government-funded research) has had a detrimental effect on the way Lyme disease has been handled here in the US as government employees can benefit financially through patents. Is the right decision being made or is the promise of financial gain the driving force?
CDC Employee Patent: https://www.google.com/patents/EP2805168A1?cl=en
Inventor Theresa M. RUSSELL, Barbara J.B. JOHNSON
Access to Care Chapter
Statement# 6 “Increased federal funding for responses to tick-borne diseases is vital, but this funding cannot come at the expense of funding for other diseases, including HIV.”
With over 300,000 new cases of Lyme disease per year, Lyme now has an infection rate six times the AIDS epidemic and twice as prevalent as breast cancer. At what point in time will the U.S. Centers for Disease Control escalate Lyme disease to Highest Alert? (With funding appropriate to the level of threat to public health)
Every single citizen of the United States is a single tick bite away from experiencing this travesty as Lyme disease is capable of producing sudden death with no warning signs; [1,2,3] heart damage requiring transplant, [4] paralysis with seizures, [5] lymphoma [6] and persistent infection after antibiotic treatment [7,8,9,10,11] along with congenital transmission [12] and ability to create wheelchair bound patients [13] yet there are no Public Service Announcements informing the public that you could become horribly disabled or die from Lyme disease.
We are dealing with a life-altering/life-threatening infection with faulty/misleading antibody tests, inadequate treatment, no medical training and absolutely no disease control.
A plague denied; essentially classifying this disease as a low-risk and non-urgent health risk.
Lyme Disease is a U.S. public Health Disaster.
Respectfully submitted,
Carl Tuttle
Lyme Endemic Hudson, NH
Cc: Tick Borne Disease Working Group
Attachments:
1. Letter from IDSA president, Cynthia Sears, MD
2. Letter to Brenda Fitzgerald MD past Director CDC
3. Letter from Dr David Volkman to Tom Frieden past Director CDC
References: (Please read them!)
1. 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.”
2. CDC Case Study #1: Three Sudden Cardiac Deaths Associated with Lyme Carditis: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6249a1.htm?s_cid=mm6249a1_w
3. CDC Case Study #2: A case report of a 17-year old male with fatal Lyme carditis
http://www.cardiovascularpathology.com/article/S1054-8807(15)00025-3/abstract?rss=yes
4. Professor Neil Spector: Duke physician uses near-death experience to encourage patient self-advocacy
http://www.dukechronicle.com/articles/2015/05/28/duke-physician-uses-near-death-experience-encourage-patient-self-advocacy#.VYlYnxtViko
Dr Neil Spector from Duke University required a heart transplant after his Lyme disease went undiagnosed for four years.
5. Nashua Mom in the ‘Lyme Light’ on Katie Couric Show
http://patch.com/new-hampshire/nashua/nashua-mom-talks-chronic-lyme-on-katie-couric-show
Fifth-grade teacher Kelly Downing was paralyzed from the neck down and interviewed by Katie Couric.
6. Infection by Borrelia burgdorferi and cutaneous B-cell lymphoma (Cancer)
https://www.ncbi.nlm.nih.gov/pubmed/9331890
Specific DNA sequences of Borrelia burgdorferi were identified in cutaneous lesions from 9 patients (follicle center lymphoma: 3/20; immunocytoma: 3/4; marginal zone B-cell lymphoma: 2/20; diffuse large B-cell lymphoma: 1/6).
7. Application of Nanotrap technology for high sensitivity measurement of urinary outer surface protein A carboxyl-terminus domain in early stage Lyme borreliosis.
http://translational-medicine.biomedcentral.com/articles/10.1186/s12967-015-0701-z
41 of 100 patients under surveillance for persistent LB in an endemic area were positive for urinary OspA protein after antibiotic treatment.
8. Culture evidence of Lyme disease in antibiotic treated patients living in the Southeast.
http://danielcameronmd.com/culture-evidence-of-lyme-disease-in-antibiotic-treated-patients-living-in-the-southeast/
Rudenko and colleagues reported culture confirmation of chronic Lyme disease in 24 patients in North Carolina, Florida, and Georgia. All had undergone previous antibiotic treatment.
9. DNA sequencing diagnosis of off-season spirochetemia with low bacterial density in Borrelia burgdorferi and Borrelia miyamotoi infections.
https://www.ncbi.nlm.nih.gov/pubmed/24968274
Faulty/misleading antibody tests landed a sixteen year old male in a psychiatric ward when his lab results did not meet the CDC’s strict criteria for positive results. His Western blot had only four of the required five IgG bands. Subsequent DNA sequencing identified a spirochetemia in this patient’s blood so his psychiatric issues were a result of neurologic Lyme disease misdiagnosed by antiquated/misleading serology. This patient was previously treated with antibiotics.
10. Granulomatous hepatitis associated with chronic Borrelia burgdorferi infection: a case report
http://www.labome.org/research/Granulomatous-hepatitis-associated-with-chronic-Borrelia-burgdorferi-infection-a-case-report.html
The patient had active, systemic Borrelia burgdorferi infection and consequent Lyme hepatitis, despite antibiotic therapy.
11. Scotty Shelton and Persistent Infection in Saginaw MN
https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/11685820
“Scotty’s brain (cerebral cortex) was positive for Borrelia burgdorferi and Borrelia myamotoi, his testicle is positive for Bb. We are now testing other tissues. Seven years of antibiotics and 3.5 years of natural treatments (along with antibiotics) and he was highly highly positive.”
12. Congenital Transmission of Lyme/TBD
https://www.dropbox.com/s/z10em0szgpm8bll/Congenital%20Transmission%20of%20Lyme%202015.doc?dl=0
13. Wheelchair-Bound Girl Calls Blessing By Pope Francis ‘Most Precious Moment Of My Life’
http://newyork.cbslocal.com/2015/09/24/pope-francis-blesses-girl-in-wheelchair/
NEW YORK (CBSNewYork) — A 12-year-old girl who has been confined to a wheelchair since being diagnosed with Lyme disease said meeting Pope Francis as he arrived in New York Thursday was “the most precious moment of my life
Sears Inducted as President of the Infectious Diseases Society of America
Sears Inducted as President of the Infectious Diseases Society of America
Cindy Sears, professor in the Division of Infectious Diseases, was inducted as president of the Infectious Diseases Society of America…
https://medicine-matters.blogs.hopkinsmedicine.org
https://livingwithlyme.us/episode-46-lyme-mold-and-environmental-toxins/
Episode 46: Lyme, Mold and Environmental Toxins
Cindy Kennedy, FNP, is joined by Dr. Kelly McCann, a public health expert who discusses Lyme Disease, mold and environmental toxins.
Dr. McCann is on staff at Hoag Memorial Hospital in Newport Beach, Calif., and has been in private practice in Costa Mesa, Calif., since 2008. She founded Partners in Health at the Spring Center in August 2009.
Dr. McCann received a bachelor’s degree in music from Brown University and a master’s degree in library science from the State University of New York at Albany. She went on to receive her doctor of medicine degree and simultaneously earned a master’s in public health (MPH) in tropical medicine at Tulane University in New Orleans. She completed both an internal medicine residency at Banner Samaritan Medical Center and a pediatrics residency at Phoenix Children’s Hospital in Phoenix.
Dr. McCann practiced medicine at the Arizona Center for Integrative Medicine where she worked and trained with renowned Dr. Andrew Weil as one of 35 distinguished fellows in residence throughout the world. After completion of the fellowship, Dr. McCann became certified in medical acupuncture through the American Academy of Medical Acupuncture, studied environmental medicine and chelation with Dr. Walter Crinnion and biotoxins with Dr. Ritchie Shoemaker and membrane medicine with Dr. Patricia Kane.
Dr. McCann is certified by the Institute of Functional Medicine and also Board Certified in Integrative Medicine by the American Board of Physician Specialties. Dr. McCann completed a master’s in spiritual psychology at the University of Santa Monica in August 2010. She was named to the newly created Board of the International Society of Environmentally Acquired Illness.
She lectures internationally on mold, lyme and environmental toxins. She lives in Costa Mesa with her husband, his daughter and their dog and cat. She enjoys yoga, dancing with her partner and traveling.
________________
For more: https://madisonarealymesupportgroup.com/2018/10/15/home-invasion-mold-an-uninvited-unwelcome-guest/
https://madisonarealymesupportgroup.com/2018/03/13/are-mold-mycotoxins-compromising-your-recovery/
https://madisonarealymesupportgroup.com/2018/10/14/got-mold/
https://madisonarealymesupportgroup.com/2018/02/24/top-3-lyme-detox-myths-busted-dr-rawls/
Gone Baby Gone – Christopher Gillberg on PANDAS/PANS
November 20, 2018
https://gnc.gu.se/english/gillberg-s-blog/gone-baby-gone?
Gone baby gone
post by Christopher Gillberg 2nd October 2018
It has been 25 years since Susan Swedo described the condition now referred to as PANDAS* (which, more recently, has come to be included as a subgroup of the somewhat larger group PANS**). Swedo had herself previously examined children who after bouts of rheumatic fever (brought on by streptococcus infection) had developed Sydenham’s chorea, a condition characterised by abnormal motor movements of the face, hands and feet, and in many cases speech difficulties, slowed cognitive processing, obsessive-compulsive thoughts, concentration difficulties, hyperactivity and other psychiatric symptoms as well. Onset of Sydenham’s chorea is usually quite acute, but typically only occurs many months after a streptococcus infection has concluded.
PANDAS/PANS is similar to Sydenham’s chorea in all relevant aspects where mental symptoms are concerned, but they manifest more dramatically; motor control issues, however, are much less pronounced or completely absent. Onset is often extremely acute – from one day to the next, or at the very least from one week to the next. A child who has previously only shown minimal or moderate signs of autism, ADHD or other ESSENCE problems (problems mild enough to generally not warrant any diagnosis) are suddenly stricken with severe separation anxiety, obsessive-compulsive thoughts and actions, tics, concentration difficulties, emotional withdrawal, tantrums, crying spells or even severe psychosis-like symptoms. Quite often they also start wetting themselves and acting as though their development has regressed by several years. Some children with this dramatic symptomatology have recently gone through a streptococcus infection (in which case it might be reasonable to consider PANDAS), whereas in other cases there is no proven link to infection whatsoever (whether streptococcus or otherwise). There are some cases where, even without any clear link to streptococcus infection, penicillin treatment still appears to reduce symptoms. However, the reason for this is unknown.
The CNC/GNC is conducting a research study on PANS in children and adolescents and the first results are currently being published.
There are a number of things that I would like to strongly emphasise now that we have completed this study on PANS, the first Swedish study of its kind aimed only at children, adolescents and their families:
1. PANS exists and is not “a hoax” or “fabricated”.
2. PANS has nothing to do with Münchhausen syndrome, which is to say that this is not something that sick or weird parents have come up with.
3. The child has usually had some minor problems before the frightening deterioration occurs.
4. Immune diseases among close family members are not uncommon.
5. We know almost nothing about the causes behind it.
6. We do not know how common it is.
7. We do not know how closely related it is to regressive autism, Sydenham’s chorea or Landau-Kleffner syndrome.
All of this means that continued research on PANS should be a top priority, especially at institutions equipped with both knowledge and an interest in expanding that knowledge base, such as the CNC/GNC in Gothenburg and the OCD team/Astrid Lindgren Children’s Hospital in Stockholm.
Anyone who feels that their child has suddenly been “spirited away” without any explanation must have some avenue towards help and understanding. Most importantly, we need to figure out what is best for all the children who one day start acting in an unrecognisable manner, almost as if their old selves were “gone”. Almost nothing can be worse in this situation than to meet so-called experts who do nothing but mistrust and question one’s account of the symptoms and the circumstances surrounding their onset.
Families living with PANS know how terrible it can be to suddenly feel as though they have “lost a healthy child”. By allowing these families to meet doctors and psychologists who are knowledgeable in the field, we can at least give them a chance to feel like they “got their child back”.
*PANDAS=Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection
**PANS=Pediatric Acute-onset Neuropsychiatric Syndrome
Christopher Gillberg will be one of the speakers at the SANE Sweden 2019 PANS Conference. For more information, please visit the following link!
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More on PANDAS/PANS: https://madisonarealymesupportgroup.com/2018/07/28/stories-of-pandas/
https://madisonarealymesupportgroup.com/2018/10/10/pans-pandas-awareness/
https://madisonarealymesupportgroup.com/2018/08/01/the-3-pans-myths-that-are-ruining-lives/
