Archive for the ‘Uncategorized’ Category

Global Lyme Alliance Announces New Partnership With Delaware Lyme Board to Help Educate Physicians About Lyme Disease

https://globallymealliance.org/press-releases/global-lyme-alliance-announces-new-partnership-delaware-lyme-board-help-educate-physicians-lyme-disease/

MARCH 12, 2019

lyme disease

CURRICULUM CREATED FOR HEALTHCARE PROVIDERS TO AID IN DIAGNOSIS AND TREATMENT OF TICK-BORNE DISEASES

STAMFORD, CONN and DOVER, DEL (March 12, 2019)—Global Lyme Alliance (GLA), the leading 501(c)(3) dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness, today announced it has partnered with the state of Delaware’s Lyme Disease Education Oversight Board (LDEOB) and launched an online Lyme disease course for physicians and other healthcare professionals.

This Continuing Medical Education (CME) certified activity presents and discusses recent advances in the management of Lyme and other tick-borne illnesses. Among the topics covered are the epidemiology of Lyme, diagnostic challenges, common co-infections and routine recommendations for the testing and treatment of Lyme disease infections based on current guidelines.

“The incidence of Lyme and tick-borne disease in Delaware and nationwide is alarming and causes so much suffering,” said Sara Tyghter, GLA Director of Education and Outreach. “GLA was delighted to work with Delaware’s LDEOB to determine the learning objectives for this educational activity and help select its faculty members.”

Serving as faculty for the course, “A Clinical Guide to Diagnosing and Treating Lyme Disease and Other Tick-Borne Illnesses,” are GLA Scientific Advisory Board member Charles Chiu, M.D., Ph.D., Associate Professor of Laboratory Medicine and Medicine, University of California, San Francisco, and Elena Frid, M.D. a board-certified neurologist and clinical neurophysiologist in private practice in New York.

The course eventually came about after Delaware House Speaker Peter C. Schwartzkopf, State Senator Ernesto B. Lopez, and other Delaware state lawmakers became aware of the high incidence of Lyme and the consequent suffering it caused constituents. In 2014 lawmakers sponsored the Delaware Senate Joint Resolution 10 which was signed into law and established Delaware’s Lyme Disease Prevention Task Force. Two years later Delaware House Bill 291 created the LDEOB and reached out to GLA since it already offered CME-accredited programs. Members worked with GLA, Drs. Chiu and Frid, pictured, in collaboration with the Postgraduate Institute for Medicine and RedMedEd, an e-learning entity, to bring the Lyme disease course to fruition.

“We feel that this program is essential to help educate healthcare professionals on the complexity of Lyme disease as a multi-systemic infection that can have the potential for long-term illness if diagnosed late or inadequately treated,” said Dr. Krista Griffin, a LDEOB member. “We wanted to impress upon healthcare providers that Lyme disease is a clinical diagnosis; rash presentation or lab testing can confirm a diagnosis but should not be solely relied upon.”

Speaker Schwartzkopf added, “Delaware is right in the middle of a hotspot for Lyme disease which is misunderstood and sometimes misdiagnosed. . . Continuing Medical Education classes like this will help physicians identify Lyme early and take action quickly to limit its effects and treat patients quickly.” Senator Lopez noted, “The Delaware General Assembly values and appreciates this meaningful step forward on behalf of all affected by this illness.”

GLA is committed to providing CME-accredited educational programs for healthcare professionals to learn more about diagnosing and treating Lyme and other tick-borne diseases. For information on all its educational programs, go to GLA.org.

To access this course free of charge, visit https://globallymealliance.org/education-awareness/physicians-training-program/.

About Global Lyme Alliance
Global Lyme Alliance is the leading 501(c)(3) organization dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness. GLA has gained national prominence for funding some of the most urgent and promising research in the field, while expanding education and awareness programs for the general public and physicians. We support those around the globe in need of information about tick-borne diseases. Learn more at GLA.org.

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Please spread the word to doctors that there are accredited CME’s they can obtain to become better educated on Lyme/MSIDS.

https://madisonarealymesupportgroup.com/2018/06/06/lyme-education-for-healthcare-professionals/

https://madisonarealymesupportgroup.com/2018/02/19/calling-all-doctors-please-become-educated-regarding-tick-borne-illness-heres-how/

https://madisonarealymesupportgroup.com/2017/06/20/help-doctors-get-educated-on-lyme-and-tick-borne-illness/

https://madisonarealymesupportgroup.com/2018/02/22/new-lyme-cme-course-available-lyme-carditis-more-than-blocked-beats/

 

 

 

Category:

Activism, Lyme, Uncategorized

‘Unrest” Documentary About ME/CFS on Netflix

http://  Approx. 2.5 Min

Filmmaker Jennifer Brea captures her struggle with Chronic Fatigue Syndrome (M.E.) while connecting with others she meets along the way.

Source: Unrest – Trailer | Video | Independent Lens | PBS

About the Film

Filmmaker Jennifer Brea was a Harvard PhD student soon to be engaged when she was struck down by a mysterious fever that left her bedridden. As her illness progressed she lost even the ability to sit in a wheelchair, yet doctors insisted it was “all in her head.” Unable to convey the seriousness and depth of her symptoms to her doctor, Jennifer began a video diary on her phone that eventually became the powerful and intimate documentary, Unrest.  Once Jennifer was diagnosed with myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS), she and her new husband, Omar, were left to grapple with how to shape a future together in the face of a lifelong illness.

Refusing to accept the limitations of life in bed, Jennifer embarks on an online voyage around the world where she finds a hidden community of millions who have disappeared from their own lives, confined to their homes and bedrooms by ME. Using the internet, Skype, and Facebook, these disparate people connect with each other, finding a much-needed sanctuary of support and understanding.

At its core, Unrest is a love story. Though Jennifer and Omar may never live the life they originally dreamed about, together they find resilience, strength, and meaning in each other and their new-found community.

To watch on Netflix:  https://www.netflix.com/title/80168300

http://  Approx. 7 Min.

Filmmaker Opens Up About Illness That Doctors Told Her Was ‘All in Her Head’

Megyn Kelly – Today Show Jennifer Brea was on her way to earning a doctorate from Harvard when she was stricken with an illness that doctors said was “all in her head.” She is joined live on Megyn Kelly TODAY by her husband, Omar Wasow, and NBC News medical contributor Dr. Natalie Azar to talk about chronic fatigue syndrome and her documentary, “Unrest.”
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Please know, Lyme/MSIDS can be an underlying factor for some:  https://madisonarealymesupportgroup.com/2015/10/17/can-mecfs-be-caused-by-lyme/
I saw many persons who had been diagnosed with chronic Lyme. The symptom pattern, along with the onset pattern, response to antibiotics, and questionable laboratory results led me to believe that there was no difference between ME/CFS and chronic Lyme. I have no doubt, however, that some persons with ME/CFS have their disease initiated by the Lyme organism…That is why over the past twenty years we have been talking of enterovirus, mycoplasma, and many other organisms. I have seen patients with ME/CFS following Histoplasmosis, Psittacosis, and other strange bugs….So, I believe that chronic Lyme is ME/CFS that is initiated by the Lyme organism. Whether this is true or not, we should know in a couple of years with the research that is bound to follow Drs. Fluge and Mella’s discovery. -By David S. Bell MD
https://madisonarealymesupportgroup.com/2018/03/23/me-cfs-summit-test-for-lyme/  Just keep in mind that current CDC 2-tiered serology misses over half of all cases of Lyme – plus it doesn’t take into account the many coinfections.

This technology is only as good as those inputting the markers and in the case of Lyme/MSIDS there is a vast polarization in the medical community of those who believe it to be a benign illness cured by 21 days of doxycycline and those who believe it can infiltrate every organ of the body eventually leading to potential death without proper long-term treatment.  Technology must include all sides and it must adapt and change to new information.

My other concern is that doctors use this as only one of many tools in their differential diagnoses because particularly with Lyme/MSIDS, people fall through the cracks due to “atypical” or “rare” presentations.  In my experience these aren’t “atypical” or “rare” at all but have simply not been reported on – therefore, doctors and researchers just aren’t aware of them.  In the case of Lyme/MSIDS the worst thing a researcher could use would be old Lyme/MSIDS research (and yes, even new meta-analysis from past research) as that would only represent the Lyme Cabal and their pigeon-holing this complex illness into a square of their own making which leaves out a huge chunk of suffering patients. They also smugly state that this chunk is only 10-20% of patients.  Microbiologist Holly Ahern recently wrote a paper showing it’s more like 60% that are chronically affected:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

To join a group whose mission is to Advocate for Recognition, Definition, & Research for Myalgic Encephalomyelitis:  https://www.meadvocacy.org/about, MEadvocacy is a project of May12.org

 

Category:

Uncategorized

March 2019 Meeting Reminder

iu-5

Don’t forget our upcoming support group meeting March 9, 2019.

Details here:  https://madisonarealymesupportgroup.com/2019/02/18/march-2019-support-meeting/

Also, don’t forget to register for the upcoming Lyme Workshop in La Crosse:  https://madisonarealymesupportgroup.com/2019/03/01/learn-about-lyme-wisconsin-workshop-march-23/  It’s only $10 and lunch is provided.

See you there!

 

Category:

Meetings, Uncategorized

Skin Inflammation & Nodules – Letting the Cat Out of the Bag

https://escholarship.org/uc/item/2f31g4pv  (Pictures of the granulomas in link)

Erythema nodosum and sarcoid granulomas — letting the cat out of the bag

Authors:  Morgado, Francisca; Batista, Mariana; Courtinho, Ines; Cardoso, Jose Carlos; Tellachea, Oscar

Abstract

A 41-year-old woman presented with a violaceous papule on the dorsum of the hand, large ipsilateral axillary lymphadenopathy, and tender, erythematous, subcutaneous nodules on the legs. Accompanying signs included fever, ankle swelling, and bilateral red eye. She recalled having a previous exposure to kittens one month before and had a positive family history for sarcoidosis. Histological examination of the hand lesion showed sarcoidal granulomas with positive Bartonella henselae DNA, whereas a biopsy done on the leg nodules was compatible with erythema nodosum. Cat scratch disease (CSD) typically presents as a tender regional lymphadenopathy preceded by an inoculation papule with spontaneous resolution occurring between 8-16 weeks. Cutaneous manifestations of CSD are rare, with erythema nodosum accompanying only 0.6% of cases. Although speculative, the background of a positive family history for sarcoidosis may explain the atypical presentation of this case, with red eye, persistent arthralgia, and associated sarcoidal granulomas.

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**Comment**

There is so much yet to be discovered about Bartonella.  Nearly every Lyme/MSIDS patient I know struggles with it.  It is far more pervasive and serious than mainstream researchers and doctors know.  They’ve always attributed Bartonella infection with a compromised immune function and cat exposure, yet infection in completely healthy people without cat exposure occurs:  https://madisonarealymesupportgroup.com/2019/01/23/chest-imaging-of-cat-scratch-disease-in-2-year-old-immunocompetent-baby-with-no-history-of-cat-contact/

https://madisonarealymesupportgroup.com/2018/07/10/bartonella-henselae-neuroretinitis-in-patients-without-cat-scratch  All the patients denied a history of a cat or any animal contact, or of having CSD findings.

https://madisonarealymesupportgroup.com/2018/07/05/cat-scratch-disease-in-a-1-5-year-old-girl-case-report/  Healthy 1.5-year-old girl who was seen in hospital for the sparing use of her left arm when crawling. Tested positively for Bartonella henselae.

https://madisonarealymesupportgroup.com/2018/04/03/encephalopathy-in-adult-with-cat-scratch-disease/  Case of a 53-year-old healthy man, presenting with confusion. Serology confirmed Bartonella henselae infection.

https://madisonarealymesupportgroup.com/2019/01/09/transverse-myelitis-guillain-barre-associated-with-bartonella/  Healthy 10 year old girl had coexisting transverse myelitis and Guillain-Barré syndrome (GBS) related to infection with Bartonella henselae.

https://madisonarealymesupportgroup.com/2018/11/05/skull-infection-due-to-bartonella/  While cats are implicated, this 3 year old had no significant medical history, presented at emergency department for a 2-week history of worsening scalp lump with redness.

https://madisonarealymesupportgroup.com/2018/03/04/bartonella-erythema-nodosum-atypical-presentations/  All immunocompetent hosts.

Not sure how many cases have to be presented before researchers change their ideology about a disease, but there’s plenty right here to show Bartonella infection is not rare in healthy people without cat exposure.

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

https://madisonarealymesupportgroup.com/2018/05/07/fox-news-bartonella-is-the-new-lyme-disease/

https://madisonarealymesupportgroup.com/2019/02/27/advanced-imaging-found-bartonella-around-pic-line/

Category:

Uncategorized

Advanced Imaging Found Bartonella Around PIC Line & Bb in Skin in Patients With Persistent Infections

I initially heard Dr. Marna Ericson at a CME conference and most recently at the ILADS convention.  Her pictures using advanced imaging techniques (single and multi-photon, correlative, super-resolutioin confocal, electron microscopy, and microPET imaging, and second harmonic generation), truly exemplify the old saying, “a picture’s worth a thousand words.” The images clearly show what patients have been complaining about for decades. Ericson has a vested interest in getting down to the bottom of things as her own son is struggling with persistent Bartonellosis.  She is now looking at Bartonella in skin cancer and Gulf War Illness as well as the role of biofilms in chronic Bartonellosis.  Please consider helping her research project.

Slides are copywrited but used here with permission from Dr. Ericson.

Bartonella – More Than Skin Deep


Dr. Marna Ericson, University of Minnesota, Department of dermatology, Director of Dermatology Imaging Center

Slides found here:  Ericson, Marna_feb 2019

Slides 1-3:  Autofluorescence of tick mouthparts

Slide 4:  Tick hyposome (mouthpart) 

Slide 5:  Coinfection information

Slide 6:  Autofluorescence of Ixodes scapularis

Slide 7:  Bartonella found in and around blood vessels in lesional skin biopsy from infected patient

Slide 8:  Increasing magnification of Bartonella in lesional biopsy of infected patient

Slide 9:  Bartonella tracks on patients

Slide 10:  Bartonella tracks/skin lesions & confocal image of lesional skin stained for Bartonella

Slide 11:  Bartonella intercalated among collagen fibrils in skin of infected patient

Slide 12:  Bartonella in brain biopsy of infected patient

Slide 13:  Bartonella in hip (femoral head) detected by confocal microscopy & Second Harmonic Generation imaging.

Slide 14:  Bartonella in bone supporting cartilage (deep articular & subcondral bone) detected by Second Harmonic Generation imaging.

Slide 15:  Biofilms & Bartonella in blood smear of infected patient.

Slide 16:  Bartonella in red blood cells of infected patient found by 3D super resolution microscopy.

Slide 17:  Bartonella found in biofilm on PIC line from infected patient.

Slide 18:  Altered lymphatic vessels in arm skin of infected patient.

Slide 19:  Borrelia (Lyme) spirochete found in abdominal skin of persistently infected patient.

Slide 20:  No, those aren’t trees.  Those are tick hyposomes!

For more on Dr. Ericson’s work:  https://madisonarealymesupportgroup.com/2018/05/24/help-support-the-study-of-bartonella/

Please, help support her research:  https://crowdfund.umn.edu/?cfpage=project&project_id=24510

Help our Research Efforts – Double Your Impact!

Please join the Beating Bartonella community in supporting a research study led by Dr. Marna Ericson and her team at the Dermatology Imaging Center here at the University of Minnesota Medical School.  Following numerous reports from clinicians and patients, an association between infection with Bartonella henselae and linear skin lesions, now called Bart-tracks (previously referred to as striae), has recently been documented in our published case report. Frequently neurological symptoms are also reported. A larger study is needed to investigate the potential role that the Bartonellae play in the development of Bart-tracks in infected patients. The goal of this study is to generate preliminary data needed to apply for grant support through traditional research funding channels. In this study, Dr. Ericson and her research team will measure the prevalence of Bartonella spp. infection in patients who present with Bart tracks using advanced imaging techniques coupled with molecular tools in blood and skin samples. Dr. Ericson will further investigate the interactions of the Bartonella with fibrillar collagen in the dermis of the skin. Research partners include Galaxy Diagnostics where the blood and tissue will be tested for Bartonella DNA. Additionally, they are looking at the role of Bartonellosis in skin cancer and Gulf War Illness.

Please make a donation to support this research!! Bartonella infection is extremely challenging to confirm with laboratory testing. As a result, the findings form this study are of critical importance to physicians and patients in the effort to better diagnose Bartonella infections in people with chronic illness potentially associated with Bartonella infection. Your support will go directly to Dr. Ericson’s lab to support this important research.

Funds raised in excess will be used for Bartonella and other vector-borne disease research.

For a list of Dr. Ericson’s published papers:  https://www.researchgate.net/profile/Marna_Ericson

 

 

 

 

 

 

Category:

Uncategorized