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Move Lyme Disease to Highest Alert Level

The following petition was started by Lyme advocate, Carl Tuttle.  https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/20602886?j=89899&sfmc_sub=410444853&l=32_HTML&u=16167516&mid=7259882&jb=60&utm_medium=email&utm_source=89899&utm_campaign=petition_update&sfmc_tk=Ht7E61Sjt1EPcm3kmzT7WRd1OW4bD%2fNfk56Ikngp05VXecJHFWYj580czcFLdw8V

Please use the following letter by Tuttle and contact your Senator along with a brief story of how Lyme and other TBI’s affected you or a loved one.  Find your Senator here:  https://www.senate.gov/general/contact_information/senators_cfm.cfm

We are only going to make progress if we keep pushing.

*************************************************************************************

Senator _________________,

MOVE LYME DISEASE TO HIGHEST ALERT LEVEL

Untreated strep throat leads to rheumatic fever which can cause irreversible heart damage but rapid culture tests available in the primary care setting has virtually eliminated rheumatic fever and the life-threatening complications associated with that disease.

Misdiagnosed and untreated Lyme disease creates the same life-altering/life-threatening consequences but this has been hidden from the worldwide medical community and general population. Just ask Duke University Professor Neil Spector who required a heart transplant after his Lyme infection went four years untreated. Spector’s laboratory tests (serology) were repeatedly negative. Faulty/misleading antibody tests are the root cause of unimaginable pain and suffering.

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]. The last time we recognized a disease with this potential to cause serious harm, (Zika) the CDC wanted 1.8 billion for research. [14]

Quote from Senator Richard Blumenthal: “Today for me culminates more than a decade of work and probably a decade more, because I’ve seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease”
Source: http://ctmirror.org/2011/07/18/blumenthal-takes-lyme-disease-fight-senate/

The truth about this devastating disease has been kept from the public for 43 years.
There are no Public Service Announcements informing the public that you could become horribly disabled or die from Lyme disease. WHY?
The one-size-fits-all IDSA treatment guideline does not scratch the surface for a Borrelia infection misdiagnosed and untreated for years or decades. This growing class of Lyme patient has been ignored by the CDC, IDSA and American Lyme Disease Foundation as the focus has been to discredit the sick and disabled along with the courageous clinicians attempting to help these patients. [15]

Lyme disease belongs in the same health threat category as AIDS and Zika and with over 300,000 cases annually Lyme is now six times the AIDS epidemic and twice as prevalent as breast cancer.

The Centers for Disease Control is 100% responsible for this runaway plague with unacceptable testing, inadequate treatment, lack of medical training and absolutely no disease control.
This is an epic forty year failure of the nation’s health protection agency responsible for the health and wellbeing of all Americans.

Lyme Disease: Call for a “Manhattan Project” to Combat the Epidemic. Raphael B. Stricker, Lorraine Johnson, Published: January 02, 2014DOI: 10.1371/journal.ppat.100379
http://www.plospathogens.org/article/info:doi/10.1371/journal.ppat.1003796

REFERENCES:

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.”

14. $1.8 billion to fight Zika: CDC moves to highest alert level
https://www.washingtonpost.com/news/post-politics/wp/2016/02/08/obama-to-ask-congress-for-1-8-billion-to-combat-zika-virus/

15. Antiscience and ethical concerns associated with advocacy of Lyme disease http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70034-2/abstract
Dr Paul G Auwaerter, Johan S Bakken, MD, PhD, Prof Raymond J Dattwyler, MD, Prof J Stephen Dumler, MD, Prof John J Halperin, MD, Edward McSweegan, PhD, Prof Robert B Nadelman, MD, Susan O’Connell, MD, Prof Eugene D Shapiro, MD, Prof Sunil K Sood, MD, Prof Allen C Steere, MD, Prof Arthur Weinstein, MD, Prof Gary P Wormser, MD
These are the individuals who have colluded to deny Lyme as a life-altering/life-threatening infection by trivializing a disease capable of ruining lives.

Again, please move Lyme Disease and other tick borne illnesses to the highest alert level.

Sincerely,

Name, address, phone, and email

 

 

 

WI Representative Mark Pocan Joins Lyme Caucus

Wisconsin Representative Mark Pocan joined the Lyme Caucus yesterday.

The caucus is a bi-partisan group working together in Congress to take action on Lyme and other tick-borne diseases.  Under the leadership of Chris Smith (NJ) and Colin Peterson (MN), it has initiated letters and actions to benefit Lyme patients, such as the inclusion of the monies for Lyme and tick-borne diseases into the Congressionally Directed Medical Research Program (CDMRP) and language and Lyme monies into Appropriations over the years and has initiated favorable legislation.  Additionally, it has queried government agencies over policies not favorable to patients.  This has reminded the agencies that someone is looking over their shoulder.  Many meetings have been held and educational sessions in DC for Congress.

With nearly 400,000 new cases of Lyme Disease per year, and Wisconsin ranking 6th in the nation, this is an important issue to Wisconinites.  There are nearly 20 tick-borne diseases (and counting) being spread by at least 8 different ticks (and counting) with 30% of reported cases occurring in children between the ages of 0-19.  

In 2015, the caucus secured for the first time ever, $5 million in funding in the House Appropriations Committee annual military spending legislation, which was adopted in the Fiscal Year 2016 funding bill which was signed into law, and will provide resources for Lyme disease research through DOD’s innovative, high-risk, high reward program.

In December of 2016, the United States House of Representatives passed, and former President Obama signed, the 21st Century Cures Act.  The Cures Act included language, similar to a bill that Rep. Smith introduced previously, which created the Interagency Lyme and Tick-Borne Disease Working Group.  Specifically, the Working Group is comprised of federal and non-federal members tasked with reporting to Congress on scientific advances, research questions, surveillance activities and emerging strains in species of pathogenic organisms.

For more see:  https://madisonarealymesupportgroup.com/2016/12/14/21st-cca-signed-into-law/  Bill language is included at the bottom of the article.

Please contact your WI representative and ask them to join the Caucus.  Let’s represent Wisconsin well:  https://www.govtrack.us/congress/members/WI

Dr. Stricker at MyLymeData Conference

  May 17, 2017

LymeDisease.org board member Dr. Raphael Stricker, who serves as co-principal investigator of MyLymeData, spoke about big data, big pharma, and precision medicine.

Fantastic 30 minutes of great information.  My only comment is that I found myself fitting into the irregular group that had Lyme arthritis (swollen, red, hot to the touch knee with fever) as well as a itchy ringed rash that appeared after I started treatment.  Personally, I’m glad I was being treated for Tick Borne Illness and not Ringworm!  I’m also thankful for his reminder of the sexual transmission aspect that everyone seems to be dodging as well as the faulty testing.

May Support Group Reminder

IMG_5979

Picture taken at the Lyme Protest in Madison in 2014.  

Photos courtesy of Della Haugen (Della’s story here):  https://madisonarealymesupportgroup.com/2010/05/08/my-lyme-story-writen-for-lymenaides/

**Our last support group meeting until fall** is this Wednesday, May 17 (2017) from 6:00pm-8:30pm at the Pinney Library on 204 Cottage Grove Road, Madison, WI.

Bring questions, ideas, and share what’s been working for you.

See you there!

IMG_6046

My first Lyme rally when I was sicker than a dog.  I was impressed then and I’m impressed now with the dedication of Lyme/MSIDS patients and advocates despite an illness that brings you to your knees.  (I’ve got my hand up)

 

Systemic Review of Cerebrovascular Manifestations of LD

http://journal.frontiersin.org/article/10.3389/fneur.2017.00146/full

Frontiers in Neurology,  20 April 2017

Cerebrovascular Manifestations of Lyme Neuroborreliosis—A Systematic Review of Published Cases

imageAdam Garkowski1*, imageJoanna Zajkowska2, imageAgata Zajkowska3, imageAlina Kułakowska3,imageOlga Zajkowska4, imageBożena Kubas5, imageDorota Jurgilewicz5, imageMarcin Hładuński5 andimageUrszula Łebkowska1
  • 1Department of Radiology, Medical University of Białystok, Białystok, Poland
  • 2Department of Infectious Diseases and Neuroinfections, Medical University of Białystok, Białystok, Poland
  • 3Department of Neurology, Medical University of Białystok, Białystok, Poland
  • 4Faculty of Applied Informatics and Mathematics, Warsaw University of Life Sciences SGGW, Warsaw, Poland
  • 5Independent Department, Laboratory of Molecular Imaging, Medical University of Białystok, Białystok, Poland

Background: Lyme neuroborreliosis (LNB) is a disease caused by spirochete Borrelia burgdorferi, involving the nervous system. It usually manifests as lymphocytic meningoradiculitis, but in rare cases, it can also lead to cerebrovascular complications. We aimed to perform a systematic review of all reported cases of LNB complicated by central nervous system vasculitis and stroke or transient ischemic attack (TIA).

Materials and methods: We conducted a systematic review of literature between May 1987 and December 2016 with patients who presented with cerebrovascular course of LNB.

Results: This study included 88 patients with a median age of 46 years. The median interval from onset of symptoms suggesting Lyme disease to first symptoms of cerebrovascular manifestations of LNB was 3.5 months. The most common cerebrovascular manifestation of LNB was ischemic stroke (76.1%), followed by TIA –transient ischemic attack (11.4%). The posterior circulation was affected alone in 37.8% of patients, the anterior circulation in 24.4% of patients, and in 37.8% of cases, posterior and anterior circulations were affected simultaneously. The most common affected vessels were middle cerebral artery—in 19 cases, basilar artery—in 17 cases, and anterior cerebral artery—in 16 cases. A good response to antibiotic treatment was achieved in the vast number of patients (75.3%). The overall mortality rate was 4.7%.

Conclusion: Cerebral vasculitis and stroke due to LNB should be considered, especially in patients who live in or have come from areas with high prevalence of tick-borne diseases, as well as in those without cardiovascular risk factors, but with stroke-like symptoms of unknown cause.

Supplementary Material
The Supplementary Material for this article can be found online at http://journal.frontiersin.org/article/10.3389/fneur.2017.00146/full#supplementary-material.  **This data shows year of publication, signs and symptoms, CSF protein level, Radiological/histopathological features, treatment, and outcome (complete or incomplete).  (Treatments included:  penicillin, steroids, ceftriaxone, doxycycline, amoxicillin, azithromycin, probenecid, cyclophosphamide, cefotaxime, and ampicillin) 

May is Lyme Awareness Month in Wisconsin since 2004

In Wisconsin the Legislature passes the proclamation every year at the state level.  Hopefully the 2017 Assembly Joint Resolution 41 will pass tomorrow.  I will post it as soon as it does.  But here is the 2004 proclamation:

 

LYME Certificate

What the Media Don’t Tell You About Lyme Disease (But Should)

http://www.huffingtonpost.com/entry/5900678fe4b06feec8ac91f3  by David Michael Conner 4/26/17

Great article.   Please go to link as there are graphics you’ll want to see.

Thank you David for speaking out for those who can’t.