Thousands of Longhorned Ticks Infest and Kill 5 Cows in NC
Five cows died in Surry County, North Carolina due to the self-cloning, longhorned tick. More than 1000 ticks were found on each cow — “These ticks are known for building intense infestations on animals.” The cause of death was acute anemia, as the cows were drained of blood by the ticks.
Asian longhorned ticks were first reported in the United States in 2017 in New Jersey and have spread to a total of 12 states.
This is a warning to people who have pets or livestock to be vigilant to protect the animals from ticks.
The longhorned tick is already known to transmit several human diseases, including spotted fever rickettsiosis, in its native East Asian countries – China, Japan and Australia. It may be only a matter of time before they become carriers of tick-borne diseases that affect humans.
Update on longicornis coming into the US from MMWR / November 30, 2018 / Vol. 67 / No. 47
Concurrent reexamination of archived historical samples showed that invasion occurred years earlier. Most importantly, ticks collected from a deer in West Virginia in 2010 and a dog in New Jersey in 2013 were retrospectively identified as H. longicornis.
Breaking News! US House Actions on Lyme & TBD: July 9, 1 Passed & 1 Blocked
Congressman Christopher Smith (R-NJ-04) has been pushing for funding and recognition for Lyme and tick-borne diseases for 27 years. On July 9, 2019 Mr. Smith testified before the Committee on Rulesand introduced two amendments relating to Lyme and tick-borne diseases to the Defense authorization bill(National Defense Appropriations Act), which will be voted on by the House later this week.
ONE PASSED RULES COMMITTEE
Congressman Smith’s first amendment #321 directs the Inspector General of the Department of Defense to initiate an investigation into the Department’s possible involvement in the bioweaponization of ticks and other insects. The amendment and requested investigation was inspired by information revealed in Lyme survivor Kris Newby’s new book, “Bitten: The Secret History of Lyme disease and Biological Weapons.” This amendment was made in order by the Committee (passed by voice vote) and will be scheduled for a vote later this week, in consideration with the full NDAA legislation.
Update: On July 12 the US House of Representatives voted to pass amendment #321 directing the Inspector General of the Department of Defense to “conduct a review of whether the Department of Defense experimented with ticks and other insects regarding use as a biological weapon between the years of 1950 and 1975 (source rollcall.com).”
Various media throughout the U.S. and in the U.K published news of Amendment #321:
House orders Pentagon to say if it weaponized ticks and released them –rollcall.com
“We need to find out: is there anything in this research that was supposedly done that can help us to find information that is germane to patient health and combating the spread of the disease.”– Pat Smith, President of Lyme Disease Association in CQ Roll All and The Sun (UK)
Pentagon ordered to reveal to Congress if its scientists used diseased TICKS as biological weapons – and if any escaped the lab – thesun.co.uk
House calls for investigation into whether Pentagon tried to weaponize ticks – thehill.com
House of Representatives orders Pentagon to investigate whether ticks were once used as biological weapons – cnn.com
House passes amendment ordering Pentagon to review whether U.S. experimented with weaponizing ticks – cbsnews.com
House orders Pentagon to review if it exposed Americans to weaponised ticks – theguardian.com(UK)
Did the US Invent Lyme Disease in the 1960s? The House Aims to Find Out – defenseone.com
Lyme disease as war weapon? Rep. Chris Smith’s push for probe advances after call for Trump to investigate – Asbury Park Press, app.com
Pentagon Ordered to Tell Congress If It Weaponized Ticks And Released Them Into the Public – gizmodo.com
STAT, an internet publication and affiliate of the Boston Globe, published an article on October 12, 2016, by Charles Piller, which focused on Swiss-born scientist, Willy Burgdorfer, who discovered the Lyme pathogen/spirochete (Borrelia burgdorferi) in 1981. STAT obtained documents of Burgdorfer’s after his death in 2014, that indicated a different pathogen was involved in Lyme disease – Ricksettia helvetica, aka the Swiss Agent, which he discovered in Switzerland in 1978. This pathogen was infecting people in Connecticut and Long Island in the late 1970s. “And scientists who worked with Burgdorfer, and reviewed key portions of the documents at STAT’s request, said the bacteria might still be sickening an unknown number of Americans today.” Burgdorfer’s documents also suggest regret that he never followed up on the Swiss Agent.
CONGRESSMAN SMITH’S SECOND AMENDMENT WAS BLOCKED Amendment #322 directs the Secretary of Defense to work with the Secretary of Health and Human Services to develop a whole-of-government strategy on Lyme disease and other tick-borne diseases infecting members of the Armed Forces and civilians. This second amendment was blocked by Democrats on the Committee in a party-line vote, and will not move to the House floor for a vote at this time. See Motion & votes from Rules Record Vote #151
See votes below. If your legislator blocked, contact him/her and tell them unacceptable! We need a national strategy to fight Lyme.
Yes to pass Tom Cole (R-4-OK) Ranking Member Rob Woodall (R-7-GA) Michael C. Burgess (R-26-TX) Debbie Lesko (R-8-AZ)
No (Blocked) Jim McGovern (D-2-MA) Chair Norma Torres (D-35-CA) Ed Perlmutter (D-7-CO) Jamie Raskin (D-8_MD) Mary Gay Scanlon (D-5-PA) Joseph Morelle (D-25-NY) Donna Shalala (D-27-FL) Mark DeSaulnier (D-11-CA)
June Actions: 2 Smith Amendments Pass House of Representatives, 1 Delgato Passes
Christopher H. Smith’s (R-NJ-04) amendment, which was approved (Division C of H.R. 2740), adds $2 million to the DOD’s Congressionally Directed Medical Research Program (CDMRP) for Tick-Borne Disease Research. The program is currently funded at $5 million.
Mr. Smith’s other amendment, adopted on June 12th, will increase funding for Lyme disease research at the Centers for Disease Control and Prevention (CDC) for FY 2020. He had testified in March 2019 before the House panel that oversees the CDC, and pushed for an increase from the base $11 million to $15 million at the CDC for Lyme. After his testimony, the committee boosted the funding to $13 million. Click here for Chris Smith Press Release
What a tremendous disservice the New York Times has done printing an article in 2019 that carries a message that doctors, supposedly experts in the field, tell parents of children who they diagnose with Lyme “ Great news, it’s Lyme disease, that’s the best thing it could be….It’s baloney that you can’t cure Lyme disease, it’s eminently curable.”
Let’s cut through the baloney…Lyme disease has been around 44 years in the US that we know about. In 2017, based on CDC’s reporting underestimate by a factor of 10, 427,000 cases occurred. Numerous peer-reviewed journal articles cite 15-20% of patients continuing to remain symptomatic or relapsing after treatment with treatment percentage rates of those not diagnosed early believed to be even higher. “Chronic Lyme,” which the “experts” call Post-Treatment Lyme Disease Syndrome (PTLDS)– a term that implies no additional treatment should be given—a term couched of course, as a research construct, which any researcher courageous and principled enough to beg the federal government for grant funds to try to get answers for chronic Lyme is probably required to use in his/her studies. Many researchers cannot get a grant if they try to study “chronic Lyme.” Word has been whispered through the halls of DC… all the research that needs to be done on chronic Lyme has been done. Now, that is baloney.
A lot of research that has been done on chronic Lyme/PTLDS has been initially or completely funded through non-profits across the country. Those researchers who dare to defy ridicule from some of their “expert” colleagues for dabbling in a “patient invented” condition, have found that there are a number of reasons why Lyme may be chronic, two examples follow. “Persisters,” are cells which remain after a course of treatment and are able to survive in a different state in the body, so traditional antibiotic treatments cannot kill them, and they may reemerge under certain conditions to again cause a patient to be symptomatic (K. Lewis, Northeastern; Y. Zhang, Johns Hopkins). Biofilms are aggregates of the bacteria that develop survival mechanisms en masse (E. Sapi, University of New Haven). Some of these same researchers are further examining what other types of antibiotics are able to kill the Lyme bacteria in those states.
Different researchers from various institutions have shown in studies that indeed, the spirochete can be found in animals after antibiotic treatment for Lyme disease, for example, mice, dog and monkey studies (S.Barthold, University of California, Davis; R.K.Straubinger, Cornell; M.Embers, Tulane). Even the NIH did a xenodiagnoses study where clean ticks bit infected individuals who had been treated and yet some picked up the spirochetes that were still in those individuals (A.Marquez,NIH).
I am not a scientist, but respect the science and know that much more needs to be done. I have spent time not whispering conspiratorially in the ears of Congress but educating Congress about the science and the patient problems, so it can make informed decisions about directing more monies and attention to Lyme disease. I am a mother who “vicariously” experienced Lyme disease through two of my children, one who was out of school for 4 full and two partial years, 3 years with seizures. I am a Lyme and tick-borne disease advocate and have been for ~35 years, since I first encountered Lyme in my school district. I was a board of education member there and dozens of students and staff were sick with a disease which no one talked about, no one provided information about; none from the health department; none from the federal government. I finally went to the military to get information to provide to parents in the district. Fortunately, by the time my kids developed it, I was able to eventually recognize it and get my children diagnosed and treated until they were restored to health to a large degree.
The same Lyme “experts,” decided in a testing meeting in 1994 in Dearborn, MI, that only certain Lyme tests would be used, after they carefully stripped away from the tests two highly specific Lyme bacteria proteins that many Lyme patients with late disease responded to, meaning many of the sickest patients no longer met any diagnostic standard. 25 years later, we use this antiquated technology and testing criteria, developed for surveillance, for Lyme disease testing, which picks up ~50% of the cases. To hear the “experts” tell it, if you test positive for Lyme, it’s a false positive, and you don’t have the disease; if you test negative, you don’t have the disease; and if it’s equivocal, maybe get retested. Imagine using 25-year old computer technology today! Yet their vested interests and powerful lobbying in the halls of Congress has put the general public at great risk of delayed diagnosis and delayed or inadequate treatment, which can lead to chronic Lyme.
The Times article indicates a month long course of antibiotics is effective regardless of stage. There are two sets of guidelines out there that don’t agree on Lyme treatment. The IDSA guidelines, which embodies a few weeks of antibiotics and you are cured, or perhaps you get sent to a psychiatrist or told to go home and live with it. The ILADS guidelines, followed by the community physicians out in the trenches risking their licenses to treat patients—treatment which allows for clinical judgement. Treating these often difficult cases no one else wants is a thankless job which requires anyone tackling it to climb a steep learning curve with peer education involved. Diagnosis and treatment often requires hours of intensive patient history-taking and record keeping, and follow-ups, 15 minute visits are not an option. These doctors never know when the “experts” who dismiss their own patients with “baloney” will find a way to have medical boards go after them or find some way to tarnish their reputations and prevent them from publishing studies showing the progression of disease. Please do not think all in the medical field have the patients’ best interest at heart—not with Lyme disease anyway.
Meanwhile, the epidemic spreads with 50% of the US counties with ticks that transmit Lyme, and that CDC data is already 5+ years old. Not only do deer and small mammals carry those ticks, but also birds, on whose migrating pathways researchers often see the spread of certain ticks and diseases they carry—about ~20 tick-borne diseases and conditions in the US now.
Yes, there are individuals who have been caught early and treated and recovered. Since there is no test for cure that I am aware of, the jury is out on the term “cure” in my opinion. I am happy that the child in the article has recovered.
I am sad, angry and repulsed that the Times would use this type of sensationalism to denigrate those with chronic Lyme and spread a dangerous message that Lyme is not serious and that it being chronic “could be nothing further from the truth.” It is that unproven dogma spread by the “experts” that has allowed millions world-wide to become sick and disabled, and some to die an agonizing death. The Times passed up an opportunity to provide a balanced scientific article on the chronic versus non-chronic debate by interviewing some of the researchers cited above for their perspective but chose the baloney instead.
Pamela Weintraub is a science journalist and winner of the American Medical Writers Association book award for Cure Unknown: Inside the Lyme Epidemic. Psychology and health editor at Aeon and former senior editor of Discover Magazine.
Joanna Lyon and Hyunuk Seung, University of Maryland School of Pharmacy, published an article in Meta Gene, May 2019 (online), Genetic Variation in the ABCB1 Gene Associated with Post Treatment Lyme Disease Syndrome Status. A possible genetic connection in PTLDS/chronic Lyme was studied: “This multi-centered, randomized control trial studied the possible correlation between ABCB1 (MDR1) gene variants and the incidence of Post Treatment Lyme Disease Syndrome (PTLDS) in affected patients,” and found “a significant association with PTLDS and patients with the rs1128503 variant allele TC on the ABCB1 gene.”
Dr. Lyon received LDA grant support for the project, and the resultant publication is the 51st peer reviewed publication which focuses on LDA-supported research. (Dr. Lyon will be lecturing on this topic at the LDA/Columbia Scientific CME Conference, September 21 & 22, 2019 in Philadelphia, PA. Dr. Lyon Bio/Talk Summary)
LDA-supported research: Articles range from the 1996 ground-breaking, Borrelia burgdorferi DNA in the Urine of Treated Patients with Chronic Lyme Disease Symptoms: A PCR Study of 97 Cases, by the late Manfred Bayer in the journal Infection to articles in The Proceedings of the National Academy of Science, Neurology, Genetics, Gene, Emerging Infectious Diseases, Journal of the American Medical Association, Biochemistry, Veterinary Sciences, Clinical Infectious Disease, Journal of International Neuropsychological Society, Ticks and Tick-Borne Diseases, to Meta Gene in 2019.
Researchers funded include, Drs. Ying Zhang, Brian Fallon, Ed Breitschwerdt, Steven Schutzer, Travis Taylor, Eva Sapi, Kerry Clark, Dan Cameron, Mario Phillip, Ben Luft and many more from across the U.S.
Other ground-breaking studies LDA has suppported with grants include:
Senator Susan Collins (R-ME), along with Tina Smith (D-MN), a member of the Senate Health Committee, and Senator Angus King (I-ME) an original cosponsor, introduced a bipartisan effort to improve research, prevention, diagnostics, and treatment for tick-borne diseases. Representative Christopher Smith (R-NJ), with lead co-sponsor Representative Collin Peterson (D-MN) introduced a bipartisan companion bill, the identical House version of the Tick Act, HR3073, into the House of Representatives. It was referred to the House Energy & Commerce Committee.
The Tick Act, Ticks: Identify, Control, and Knockout (TICK) Act, S1567, is an effort to effort to improve research, prevention, diagnostics, and treatment. The Tick Act incorporates significant language from the HR 220 Chris Smith (NJ-4) bill introduced early in 2019 to establish an office for tick-borne diseases but broadens the scope to vector-borne diseases, which include tick-borne diseases but also mosquito and other insect-borne diseases. The bill also reauthorizes Regional Centers for Excellence in vector-borne diseases for FY2021-2026, $10M per fiscal year, as their current funding runs out in 2021. Additionally, the bill authorizes CDC grants of $20M per year to state health departments to improve collection of data, improve early diagnosis, improve treatment, and raise awareness.
Tick Talk from Washington, DC & the Scoop on Companion Bills
The last year has seen a flurry of activity in Washington. Here’s the scoop on the bills, briefings, and bipartisan politics.
2018 HISTORY In the last Congress, May 2018, HR 5900, “National Lyme and Tick-Borne Diseases Control and Accountability Act of 2018’’ was introduced into the US House of Representatives by Congressman Christopher H. Smith (R-NJ). Representative Collin Peterson (D-MN) and others cosponsored the bill. The Act will establish the Office of Oversight and Coordination for Tick-Borne Diseases in the Office of the Secretary of Health & Human Services (HHS) to be headed by a director appointed by the Secretary. The bill purposes are to oversee the creation and establishment of an integrated national strategy to overcome Lyme disease and other tick-borne diseases (TBD) and to oversee and coordinate Lyme and TBD programs and activities across agencies and offices of HHS.
The objectives of the Office of Oversight & Coordination for Tick-Borne Diseases include expansion and enhancement of research; expansion and improvement of surveillance and reporting of Lyme and TBD; development of effective diagnostic tests to accurately and timely diagnose, including direct detection tests; development of treatments to cure or improve the lives of those affected with Lyme & TBD/ disorder; design and conduct clinical trials of sufficient size and duration to support clinical recommendations; development of patient registries; documentation of experiences of health care professionals in diagnosing TBD; inclusion of individuals with chronic Lyme disease in clinical, research; coordination with international bodies.
2019 EFFORTS Congressman Smith (R-NJ) introduced the identical bill to the above HR-5900 in the new Congress, January 3, 2019. Collin Peterson (D-MN) was onboard as lead co-sponsor of this bipartisan legislation, HR 220. The two Congressmen are co-chairs of the House Lyme Disease Caucus and have initiated many actions over time to bring help to those afflicted with Lyme and other TBD. In 2017, Mr. Smith’s state of NJ ranked 3rd in Lyme disease case numbers (~12% of all Lyme in US) and Mr. Peterson’s state of Minnesota ranked 5th (with ~5 ½% of cases). This bill with the same provisos as in the 2018 History above, sits idling in the House Energy & Commerce Committee. Lyme Bill HR 220
In May 2019, the Senate Committee on Aging asked me to provide a phone briefing for them on Lyme and TBD and to provide follow-up material. That Committee is chaired by Senator Susan Collins (R-ME), whose state ranks 8th in case numbers (with 4+% of all Lyme in the US). The Senator’s office also held meetings on Lyme with the Midcoast Lyme Disease Support & Education non-profit, an affiliate partner of the Lyme Disease Association, Inc.
On May 23rd, I went to Washington to provide a briefing to a packed room of House staff arranged by Congressman Chris Smith (R-NJ). CDC’s Paul Mead, Columbia’s Dr. Brian Fallon, Live Lyme Foundation’s Olivia & Holiday Goodreau also spoke. Congressman Smith opened with the seriousness of Lyme and TBDs, and his decades of frustration with his work in Congress to get Lyme legislation passed to help patients—legislation similar to other disease legislation he has gotten passed without the strenuous opposition he faced with Lyme. He then spoke about Kris Newby’s newly released book, Bitten, which credibly documents a biological warfare program in the US which focused on ticks and tick-borne diseases. He announced his efforts to have an investigation to determine what happened, how it happened, and what impact it may have had on the current Lyme and TBD situation. Tornado warning sirens ended the briefing after two hours, a long time in DC. Congressman Chris Smith Guest Blog
Simultaneous to the House briefing, Senator Susan Collins (R-ME), along with Tina Smith (D-MN), a member of the Senate Health Committee, and Senator Angus King (I-ME) an original cosponsor, introduced a bipartisan effort to improve research, prevention, diagnostics, and treatment for tick-borne diseases. The Tick Act, Ticks: Identify, Control, and Knockout (TICK) Act, S1567, is an effort to effort to improve research, prevention, diagnostics, and treatment. The Tick Act incorporates significant language from the HR 220 Smith bill above to establish an office for tick-borne diseases but broadens the scope to vector-borne diseases, which include tick-borne diseases but also mosquito and other insect-borne diseases. The bill also reauthorizes Regional Centers for Excellence in vector-borne diseases for FY2021-2026, $10M per fiscal year, as their current funding runs out in 2021. Additionally, the bill authorizes CDC grants of $20M per year to state health departments to improve collection of data, improve early diagnosis, improve treatment, and raise awareness.
On May 29, Congressman Smith hosted a Congressional Town Meeting on Lyme & TBD in Wall, NJ. Dr. Ben Beard, CDC, Dr. Richard Horowitz, and I spoke for over 3 hours to a packed room despite flash flood and tornado warnings, DC déjà vu. Press coverage of the event was great. Some individuals in positions to help are beginning to take Lyme seriously. Read More
As I traveled to DC to be sworn in for a second term as a public member representing patients on the Health & Human Services Tick-Borne Disease Working Group on June 3, 4, Representative Christopher Smith (R-NJ), with lead co-sponsor Representative Collin Peterson (D-MN) was introducing a companion bill, the identical House version of the Tick Act, HR3073, into the House of Representatives. It was referred to the House Energy & Commerce Committee. APP: ‘Tick Act’ expected to aid fight against Lyme disease
LDA POSITION The Lyme Disease Association supports all of these bills. With the companion bills, we have to ensure whenever we can both during the process of passage and after passage that the monies will be distributed according to disease burden in the US, a proviso that LDA successfully strove to get included in the legislation. CDC says tick-borne diseases made up 77% of vector-borne diseases from 2004-2016. That is why we need the lion’s share of funding to go to tick-borne diseases, especially Lyme disease, with its 427,000 cases in 2017.
No tornadoes occurred during my last Working Group trip to DC; however, I picked up an unwelcome hitchhiker that “latched” on to me in DC, a tick that either decided NJ was a great place to vacation or heard that I was a danger to her kind. My 35 years working to help patients with tick-borne diseases has confirmed that we have to simultaneously deal with diagnosing and treating patients with tick-borne diseases while dealing with the perpetrators of the epidemic− to quote New York Lyme advocate Jill Auerbach, “well, it’s the ticks of course!” Let’s help these legislators provide government with the tools necessary to make our patients well, to stop ticks, and reclaim our outdoors.
Pat Smith Appointed to New Panel of the TBDWG
Patricia V. Smith, has been appointed as one of the public members of the new panel for Health and Human Services Tick-Borne Disease Working Group (TBDWG). Pat is in her 22 year as President of the all-volunteer run national non-profit Lyme Disease Association (LDA) and has been a leading voice and advocate for patients for over 3 decades. She was instrumental in writing and passing the legislation that resulted in the formation of this federally mandated TBDWG. This appointment was announced publicly during the first meeting of the new TBDWG on June, 4, 2019.
As witnessed during the meeting, Pat will continue to be the voice of the patient and the growing numbers of chronically ill. The panel convened for introductions, to hear public comment, and to develop subcommittee topics and establish subcommittee chairs to begin the work toward the next report to Congress due November of 2020. Unlike last term, nomination for subcommittee members will not be publicly solicited, but will be selected by the prospective co-chairs for each of the 7 subcommittees determined at the meeting.
Pat served on the inaugural panel of the TBDWG, which presented it’s first report to Congress in November of 2018. She is joined for a second term by other returning members:
Charles Benjamin (Ben) Beard, Ph.D.-Deputy Director, Division of Vector-Borne Diseases, National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention;
Dennis M. Dixon, Ph.D.-Chief, Bacteriology and Mycology Branch, National Institute of Allergy and Infectious Diseases, National Institutes of Health
Captain Estella Jones, DVM– Deputy Director, Office of Counterterrorism and Emerging Threats, Food and Drug Administration
Other new public and federal members and their alternates were also announced at the first meeting of the new TBDWG panel, which took place June 4, 2019 in Washington DC, and include:
The new Working Group will be chaired by David Hughes Walker, M.D., Professor of Pathology and Executive Director, University of Texas Medical Branch Center for Biodefense and Emerging Infectious Diseases. He is an expert in Rickettsial diseases, particularly RMSF; and Leigh Ann Soltysiak, Owner, Principal, Silverleaf Consulting, LLC.
Robert Sabatino– Founder and Executive Director, Lyme Society Inc., Staten Island, New York (Term expires in August 2019).
Scott Palmer Commins BS, M.D., Ph.D.– Associate Professor of Medicine & Pediatrics, University of North Carolina at Chapel Hill; Member, UNC Food Allergy Initiative, Thurston Research Center (Chapel Hill, North Carolina)
Sam T. Donta, M.D.– Infectious Disease Consultant, Falmouth Hospital; and Former Member, U.S. Department of Defense Tick Borne Disease Research Programmatic Review Panel (Falmouth, Massachusetts)
Eugene David Shapiro, M.D.– Professor of Pediatrics, Epidemiology, and Investigative Medicine, Yale University School of Medicine; Vice Chair for Research of the Department of Pediatrics; Co-Director of Education for the Yale Center for Clinical Investigation; and Deputy Director of Yale’s PhD Program in Investigative Medicine (New Haven, Connecticut)
Regular Government Employees (Federal Members)
Commander Rebecca Bunnell, MPAS, PA-C– Senior Advisor, Learning and Diffusion Group, Innovation Center, Centers for Medicare and Medicaid Services
Angel M. Davey, Ph.D.– Program Manager, Tick-Borne Disease Research Program, Congressionally Directed Medical Research Programs, U.S. Department of Defense
Leith Jason States, M.D., MPH (FMF)– Deputy Chief Medical Officer, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services
Adalberto (Beto) Pérez de León, M.D.– Director, Knipling-Bushland U.S. Livestock Insects Research Laboratory, Agricultural Research Service, U.S. Department of Agriculture
Alternate Government Employees (Federal Members)
Chien-Chung Chao, Ph.D.– Research Chemist, Viral and Rickettsial Diseases Department Infectious Diseases Directorate, Naval Medical Research Center, U.S. Department of Defense
Captain Scott J. Cooper, MMSc, PA-C- Senior Technical Advisor and Lead Officer for Medicare Hospital Health and Safety Regulations, Centers for Medicare and Medicaid Services
Shahla Jilani, M.D.-Deputy Chief Medical Officer, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services
David A. Leiby, Ph.D.-Chief, Product Review Branch, Division of Emerging & Transfusion-Transmitted Diseases, Office of Blood Research & Review, Center for Biologics Evaluation & Research, Food and Drug Administration
Commander Todd Myers, Ph.D.-Scientist, Office of the Chief Scientist, Office of Counter Terrorism and Emerging Threats, Food and Drug Administration
Samuel S. Perdue, Ph.D.-Section Chief, Basic Sciences and Program Officer, Rickettsial and Related Diseases, Bacteriology and Mycology Branch, National Institute of Allergy and Infectious Diseases), National Institutes of Health
Susanna N. Visser, Dr.PH -Associate Director for Policy, Division of Vector-Borne Diseases, National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention
On May 29, 2019, The Lyme & Tick-Borne Diseases Congressional Town Meeting Sponsored by Congressman Christopher H. Smith (NJ-4) was held in the Wall Township, NJ, Municipal Building. Despite tornado warnings, flash flood warnings with torrential rains, a packed house of more than 200 people attended the three and a half hour event.
Wall Mayor Kevin Orender gave opening remarks on the seriousness of Lyme followed by Congressman Chris Smith discussing the spread of Lyme and tick-borne diseases and the difficulties of getting legislation passed to try to prevent disease and to help get research monies for patients who have difficulty getting diagnosis and treatment. He showed a stack of bills he has authored over two decades for Lyme disease. Dr. Ben Beard, Deputy Director , CDC Division of Vector-Borne Diseases, spoke on “Tick-Borne Diseases in the US: Burden, Trends, & What You Can Do To Protect Yourself.” Dr. Richard Horowitz, Internist in Private Practice in New York, provided “Updates in the Diagnosis & Treatment of Lyme & Chronic Disease.” Pat Smith, President, Lyme Disease Association, Inc., presented “Lyme & Tick-Borne Diseases: Their Spread, The Ticks, & Government Activity.”
Brian Dashore is a 17-year-old teen who has had Lyme Disease, Mold Biotoxin illness, and other co-infections. He has been undergoing treatment for eight years with multiple world-renowned doctors. Brian is the son of Jodie Dashore who is a well-known doctor in this field. He recently established a website called teenlymehub.com with a Facebook group. He will be talking about the educational aspects of a child with Lyme Disease.
How My Differing Childhood Experiences Impacted My Educational Life
I clearly recall running at baseball practice when my left leg started to drag. I was only 6 years old, and I just kept trying to run. A burning sensation ran up to my pelvis. My coach thought I pulled a muscle and sent me home.
When I arrived home, my mom, a neurologist and naturopathic doctor, evaluated me. She couldn’t find a reason for the pain and near paralysis of my leg. We traveled to Boston to see her good friend, an orthopedic surgeon at Harvard. After a battery of tests including nuclear full body bone scans and 20 tubes of blood, they put me in a wheelchair.
The results were inconclusive.
We saw nineteen specialists before receiving a referral to a pediatric Lyme-literate specialist. I was diagnosed with Lyme disease, Bartonella, and 11 coinfections.
By this time, I had also developed several other symptoms. My face began to grimace and twitch. It felt like bugs were crawling under my skin and my brain was shivering. I also gradually grew mentally and physically weaker. I frequently lost my balance and had an assortment of cognitive issues. My anxiety increased and sleep brought on night terrors.
The pain and dragging of my leg meant that I was still in the wheelchair when I returned to school. My immune system was also weak and reactionary, so I also had to wear a mask in the hallways at school.
These presented their own world of challenges. I frequently faced bullying on the playground. The school bus rides were full of bigoted, discriminatory, and snide remarks. My guidance counselor suggested sharing my condition with my classmates might help.
I stood in front of my fourth-grade class and spoke about my condition. It was a turning point for my classmates and me. They shared that they were afraid to “catch” my motor tics, blinking eyes, head nodding, vocalizations, limp, back pain, and limited range of motion in my head and neck.
Speaking in front of my class, opened the discussion to understanding. I think for fourth graders is a huge milestone, and it seemed to help. Some of my classmates started steering my wheelchair for me. Others carried my bag. A few even came over to my house for playdates. That moment also taught me that I can’t rely on others to advocate for me. I need to be able to bring change to my own world.
My physical limitations extended into academic challenges too. When my treatment began, the school provided academic accommodations. I struggled with handwriting, math word problem, focus, and concentration. Soon enough it felt like the fog lifted. I was able to understand and grasp things that had been difficult. Many of my physical issues were also diminishing and vanishing.
As I reflect back, it’s been a long journey. There is still more work ahead, but I have goals and feel I can achieve them. I’ve had the good fortune of growing up around my mom’s practice and the work of her mentors. My involvement in the Lyme community also opened doors for me. I’ve spoken alongside Congressman Chris Smith, Dr. Robert Bransfield, and Mrs. Smith.
I’m entering my senior year at a rigorous pre-med integrated health and science high school in the fall. So, I’ll spend my summer working on my goals. I’m sharing my story at AutismOne in Chicago. I need to decide where I will apply to medical school. Helping others is important to me, so I’m also active in my online support group, TeenLymeHub which is featured on my website teenlymehub.com.
Congressman Christopher H. Smith Guest Blog
May Awareness LDA Guest Blogger
Congressman Christopher H. Smith (NJ-04), elected in 1980, is currently in his 20th term in the U.S. House of Representatives, serving New Jersey’s Fourth Congressional District.
Since the early 1990s, Smith has authored comprehensive amendments and legislation to increase federal funding for Lyme research and enhanced treatment access for Lyme patients. Smith co-founded and currently co-chairs the bipartisan Lyme Disease Caucus, which serves as an incubator for Lyme disease legislation and promotes Lyme disease awareness in the House of Representatives.
Smith’s legislation (H.R. 611; H.R. 2557; H.R. 1179; H.R. 741; H.R. 3427) to create a Tick-Borne Diseases Advisory Committee served as the prototype and was ultimately incorporated as Section 2062 in the 21st Century Cures Act (P.L. 114-255). Section 2062 established the first federal Interagency Lyme and Tick-Borne Disease Working Group dedicated to facilitate research, development, and collaboration on Lyme disease. In November 2018, the Working Group released its first report to Congress, stating: “[i]ncreased Federal funding, prioritization, and leadership are needed to reverse the alarming trends associated with tick-borne diseases.” Smith is already working on legislation to help the federal government pursue this mandate.
A Message from Congressman Chris Smith
As the co-chair of the bipartisan House Lyme Disease Caucus, I am deeply grateful and inspired by the Lyme Disease Association, other NGOs, family caregivers, Lyme literate docs, and—above all—the patients who continue to press our government to invest more in research for a cure, the prevention and best treatment options for those with Lyme.
Each day, the Caucus works to advance initiatives to help the overwhelming number of patients currently suffering from Lyme disease; the more than 300,000 Americans who will be diagnosed with Lyme just this year alone; and the hundreds of thousands who are unknowingly suffering from Lyme due to misdiagnosis or lack of clear symptoms.
The most prevalent vector-borne disease in the U.S. today, Lyme can lead to disseminated infection and can affect every system in the body, including the central nervous system. Later symptoms of Lyme include neurological problems such as facial paralysis, memory loss and heart symptoms such as heart block and inflammation of the heart muscle. Lyme has been reported in every state in the U.S. My state of New Jersey has a particularly high incidence of Lyme, yet, unfortunately incidences of Lyme are rapidly increasing across the nation.
We have made some important strides combatting Lyme disease in Congress—funding research through the Department of Defense and the Centers for Disease Control and Prevention. But Lyme is now an epidemic and much more must be done to help those exposed to and suffering from Lyme.
The federal Tick-Borne Disease Working Group—created by provisions I wrote and helped secure in the 21st Century Cures Act (P.L. 114-255)— released its inaugural report to Congress late last year. The federal Working Group admitted that “increased Federal funding, prioritization, and leadership are needed to reverse the alarming trends associated with tick-borne diseases.” They added: “Federal funding for tick-borne diseases is less per new surveillance case than that of other diseases.”
We need greater funding and resources to address the many remaining roadblocks to proper Lyme disease diagnosis and treatment. As the author of new legislation, H.R. 220, the National Tick-Borne Diseases Control and Accountability Act, I am working hard to boost scientifically-based answers to provide solutions, and to bring greater federal support to the patients living with this debilitating disease.
I am also looking into highly disturbing claims—shocking—and data revealed in a new book released just last week, “Bitten: The Secret History of Lyme Disease and Biological Weapons.” Authored by Kris Newby, a Lyme Disease survivor and producer of the compelling Lyme Disease documentary “Under our Skin,” the new book, documents serious allegations about possible complicity by U.S. government officials—as far back as the 1950s and 60s—in the development of Lyme Disease.
I’ve read the book—couldn’t put it down. The persuasive and frightening information detailed in the book requires a serious and comprehensive investigation to get to the truth and determine if there is any legal culpability in the spread of Lyme Disease. I have raised this issue with the President and Cabinet members of several government agencies, and have, along with Collin Peterson the democrat co-chair of the Caucus—requested an Inspector General investigation through the Departments of Defense, Agriculture and Homeland Security.
We owe it to the overwhelming number of individuals suffering from Lyme Disease to go wherever the facts lead. Transparency is key. We must establish the truth of the origins of Lyme disease and be fully prepared to treat, cure and prevent this insidious disease in the future.
Chris Smith is a Republican congressman serving New Jersey’s Fourth Congressional District. Smith, who has written more laws than all but one of the current 435 members of Congress, is the cofounding, cochairman of the Lyme Disease Caucus in the House of Representatives and has successfully pushed for increased federal funding of Lyme research.