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President's Blog
LDA President’s Blog – Why Patients Need Government Investigation into Lyme’s Origins & Any Biowarfare Experiments

HISTORY-Forty-six years after a mother alerted public health about an unknown disease affecting her Connecticut neighborhood, patients still await answers about Lyme disease and help from the federal government− little has been forthcoming. It’s been 37 years since I first saw Lyme as a board of education member and 29 years since I first contacted Congressman Chris Smith for help regarding Lyme disease.  

I approached him because my district had many seriously ill students and staff members who could find little medical help and no assistance for disrupted educations. Congressman Smith set up a DC meeting for me with CDC and NIH officials to present a report on 9 Monmouth/Ocean NJ school districts in the same situation, yet no public health authorities were involved to help the district. Officials were shocked and could not believe the devastation I described to them. They subsequently came to NJ and did their own study of 5 of the school districts which confirmed the effects on the districts and these children. Congressman Smith held a Congressional meeting In Wall Township which overflowed the room and CDC presented their study, and I spoke at this meeting as did my daughter who was then suffering seizures from Lyme.  The CDC refused to publish its school study, continuing to tell me they would, so the LDA asked Lyme Times, a lay journal, to publish it a few years ago for all to read, as it had been presented publicly by CDC.  

Patients and advocates have been benefitting from Mr. Smith’s efforts to help us change that situation. Working with Congressman Smith, the Lyme Disease Association has been able to get bills introduced and passed over decades; educate federal & state legislators; set up a HHS Working Group on tick-borne disease; help parents threatened with Munchausen by Proxy (making child sick) whose children were going to be removed because of long-term treatment with antibiotics; and help doctors whose licenses were threatened for treating with antibiotics. Sadly, some still have had their children removed and physicians continue to be harassed.

UNANSWERED QUESTIONS-Uncomprehendingly, we are left with many asked but unanswered questions. There continues to be government resistance to solving even the most basic issues such as the continued use of tests discussed during a 1994 meeting where dissenting researchers were refused the right to present a minority report—tests which studies have shown are less than 50% accurate, whereby a person can test negative and still have the disease. Scientists have come forth over time with tests to be examined, but CDC has appeared to have neither considered them nor recommended them for further study to our knowledge.

Why do CDC and NIH continue to rely on one set of treatment guidelines for Lyme disease which recommend (read: allow) only a few weeks of doxycycline for a complex organism such as Borrelia burgdorferi bacteria that causes Lyme disease, when there is another set of guidelines that permit doctor discretion? Why are patients still told, it’s in your head; you need a psychiatrist;  you’re cured, you had two weeks; you have to learn to live with it; don’t use alternative therapies; it’s not Lyme (what is it you ask,  a shrug)? Why are some patients being misdiagnosed with MS, ALS, CFS, FM, lupus, ADD, RA, Alzheimer’s, and Parkinson’s which turn out to be Lyme and other tick-borne diseases apparently causing these symptoms in a number of cases? Why are doctors helping patients get better with long-term and combinations of antibiotics still called quacks, unable to be a part of insurance plans, and subject to medical board actions? Why is research being privately funded in prestigious institutions investigating antibiotic treatment options and government says research is done, long-term antibiotics don’t work and can be harmful?  

CHRONIC LYME DENIAL-Many doctors, scientists, patients, and advocates have known for decades it’s “chronic Lyme”—persisting symptoms after short-term treatment which occurs in 20% or more of Lyme patients−often combined with other tick-borne diseases (TBD), almost 20 of which are now found in the US, and can be acquired singly or in combinations. Those suffering or helping these patients have been ridiculed in media over the decades, with Lyme called a housewife’s disease, a yuppie disease, mass hysteria, conspiracy theory, hoax perpetrated by those anti science.  In 2021, the “long haulers” of COVID 19 have thankfully not been scorned or shamed, why are “chronic Lyme” sufferers singled out for this abuse?

WHY INVESTIGATE ANY BIOWARFARE ORIGINS-The origins of COVID19 have already been investigated and linked  with the NIH having been shown to have funded “gain of function” research—modifying a biological agent to confer new or enhanced activity to that agent. Why is it then a conspiracy theory to investigate the murky origins of Lyme?

Biowarfare has been out there for hundreds of years. “Man has used poisons for assassination purposes ever since the dawn of civilization, not only against individual enemies but also occasionally against armies. However, the foundation of microbiology by Louis Pasteur and Robert Koch offered new prospects for those interested in biological weapons because it allowed agents to be chosen and designed on a rational basis.”  (F. Frischnecht, Pasteur Institute: 2003, EMBO, “The History of Biological Warfare”-see NIH website)

It’s time for government transparency.  Provide whatever the truth is about tick releases and other TBD experiments that some US scientists have come forth with and that government documents appear to support. 476,000 people are diagnosed and treated annually in the US according to CDC. They and the general public deserve to know what happened in the past to aid in the search for prevention and cure of Lyme and other TBD.

 




James Occi (PhD Cand.) Guest Blog – Ticks

May Awareness LDA Guest Blogger

Occi.Headshot.2018-1-e1556241691780-260x260Jim is a microbiologist and has conducted antibiotic discovery research for over 30 years in big pharma and academia. Jim is currently a supervisory microbiologist at the New Jersey Department of Health conducting viral (arboviruses and covid-19) surveillance for the state. He is starting a multi-partner plan to institute a state-wide tick surveillance and testing program for the state of New Jersey. Jim is also a PhD candidate at the Center for Vector Biology at Rutgers studying the ticks of New Jersey and the pathogens they carry. Jim expects to graduate in 2022.

“I’m Bad, I’m Nationwide.”

by James Occi*

Let’s discuss ticks around the country.  Oh, and two things about the title. Ticks aren’t “bad”, they are just trying to perpetuate their own (just like any other organism). And ticks do not obey borders of sovereign nations or states.

There are over 850 species of tick in the world.  Approximately 180 are soft ticks (argasid ticks) and 680 are hard ticks (ixodid ticks).  Since you are reading this blog on the Lyme Disease Association website, you are well familiar with blacklegged ticks (Ixodes scapularis and west coast cousin, I. pacificus), American dog ticks (Dermacentor variabilis) and lone star ticks (Amblyomma americanum). We will now consider a couple lesser-known tick species and their public health implications.

I will start with the Gulf Coast tick, Amblyomma maculatum.  As the name implies, this tick is found primarily and historically in the southeastern US Gulf states. But its range is expanding westward and northward.  In 2013, Delaware became the northern most state with established populations. There are rumors in the tick research community that A. maculatum has been spotted in New York. Migrating ground-feeding birds are the most likely means of range expansion. On appearance the adults are sometimes confused with the American dog tick, Dermacentor variabilis.  To differentiate, the Gulf Coast tick has much longer mouthparts.

The adults feed on many different hosts such as livestock, deer as well as humans and their pets. The immatures will feed on rodents, other small mammals and birds. When fully fed and mated a female Gulf Coast tick can lay 10,000 eggs.

This species can tolerate xeric conditions which means it can survive in sunny areas with relatively low humidity. (Conditions that Ixodes scapularis would cringe at.)  It will quest in the middle of the day in sunny, non-shaded areas. Whereas some ticks must climb down from their questing positions to rehydrate, Amblyomma maculatum can “hang out” all day.

This tick is tough as nails, but what’s the news on the potential for pathogen transmission?   Amblyomma maculatum is a known vector of Rickettsia parkeri which causes tidewater spotted fever sometimes known as American boutonneuse fever.  The good news is that published reports suggest the disease is not as severe as its close cousin, Rocky Mountain spotted fever.  Another difference is that most A. maculatum bites resulting in R. parkeri transmission show an eschar or small scab at the punctum (bite mark).

In cattle and deer, the ears can be so infested it results in a condition called “gotch ear”.   In dogs this tick can cause canine American hepatozoonosis caused by Hepatozoon americanum. The weird part?  Dog contract this infection by eating Gulf Coast ticks infected with the oocysts of this protozoan and not by being bitten by the tick. 

The second tick we will discuss is Carios kelleyi, the soft tick of bats in north and south America. Right off the bat (sorry) I will emphasize that bats are the victim here.  These bats are the unfortunate host of these ticks and should praised and protected for their ecological role in nature. As for the bat ticks, they have a radically different lifestyle than our more commonly encountered hard ticks. Carios kelleyi has four stages just like hard ticks:  egg, larva, nymph and adult.  That’s where the similarity ends.

These soft ticks are classified as endophilic and nidicolous. That means the hide in the nest or roost of their hosts and are rarely found outdoors. How do they find a host if they are not hanging off a blade of grass like a blacklegged tick?  They hunt based on the cues from their hosts.  Remember, they are waiting in their hosts resting area so they don’t have to “look” far.  The most important cue is probably carbon dioxide.  When the host migrates or leaves the roost for some time, these ticks will just wait in the cracks and crevices until the bats return.  And they can wait for months, sometimes years (depending on species of soft tick), without feeding. When the bats return, they give off carbon dioxide and the ticks emerge looking for a blood meal.  The other major difference between argasid and ixodid ticks is that they only feed for 30 minutes to an hour so.  They do not attach to the host for extended feeding periods (except for argasid larvae) as ixodid ticks do. Another major difference is that argasid ticks can feed multiple times for each stage.  Ixodid ticks feed only once for each stage. Argasid females also lay multiple egg batches but with fewer eggs than ixodid ticks, which lay one large batch and then die.

Is there a public health threat to humans?  On a scale of 1 to 10, surely less than 1. I say this based on this ticks’ lifestyle. Several conditions would need to be satisfied for a human to be a bite victim. There would need to be a bat-infestation (and I’m not talking one or two bats) in the home, the bat roost must have ticks and the bats were excluded or removed and the ticks are now looking for alternative blood sources. These ticks can carry Rickettsia (of the spotted fever group) and Borrelia (of the relapsing fever variety) but as far as I know, there has been only one documented case of someone testing positive for this relapsing fever Borrelia (B. johnsonii).  The disease potential of these two pathogens has not been studied. 

One final note on bats: They are under protected status.  One needs to find a knowledgeable bat exclusion expert if there is a bat problem in a residence.

I have said it before and I will say it again: “Know your enemies”. Learn their habits and their ways and you will be better prepared to prevent tick-borne diseases.

*The information in this blog reflects my own opinion and not that of my employer or educational institution.

 

 




President's Blog
LDA President’s Blog – CDC Doctor Webinar: Help or Hindrance for Patients?

BACKGROUND During May Lyme Disease Awareness Month, many Lyme groups across the country promote awareness with different projects, programs, and activities to focus on Lyme disease when the Ixodes scapularis poppy seed sized nymph ticks begin feeding in earnest.

When the CDC announced a webinar offering continuing education for health care providers for Lyme Awareness Month, some thought it would provide much needed education for doctors about the reality of Lyme disease for patients and what CDC could do to actually help. This assumption was a valid one. The 2nd HHS Tick-Borne Disease Working Group (WG) in its 2020 Report to Congress had a recommendation that CDC should develop such a curriculum with patient involvement. Federal agency arguments at the WG table said patients could not really be present in the development of such programs− too difficult to get patients incorporated into that aspect. But certainly, as the unanimously adopted recommendation reflected, “the final curriculum shall incorporate feedback from patients, clinicians, and research scientists with expertise/experience that represents diverse scientific and clinical experiences on the full spectrum of Lyme disease and other tick-borne diseases/conditions.” So did CDC solicit patient input for this online webinar? By its own admission when asked whether there was patient input at any level of this webinar, the answer was no, because it was a clinical educational tool.

MY ASSESSMENT After watching this webinar, Lyme Disease Update and New Educational Tools, several times, I can honestly say any small benefit this conceivably could have had is clearly wiped out by the continued refusal of government to present the reality of Lyme disease. I saw no meaningful help for physicians nor for patients for their illness, and no information or new tools, only old, repackaged dogma.  Read below for details.

CDC WEBINAR PRESENTER The webinar itself was presented by Grace Marx, MD, MPH, credentialed as a medical epidemiologist from Bacterial Branch, Division of Vector-Borne Diseases, CDC. No reflection on her personally, but further research online indicated she is board certified in internal medicine and infectious disease, and a member of the epidemiology intelligence service, credentials CDC did not seem inclined to mention in the webinar—despite bias in the latter two areas during the “Lyme Wars.”

TRANSMISSION TIME Following CDC’s standard rhetoric, the webinar opening discusses that disease transmission occurs after an infected tick has been attached for at least 24 hours and most transmission occurs after 36 hours.  Instead of providing solid information that the longer a tick is attached, the greater the risk of infection, qualifiers were attached− often precluding doctors from making a timely Lyme diagnose and treatment.  These qualifiers are not supported by all peer review, especially studies that indicate Lyme bacteria are sometimes found in tick salivary glands at time of attachment. So the time necessary to move from the midgut to those glands (which provides the basis for the 36 hr. estimate) is not a factor.  No comment was made on attachment time for other tick-borne diseases—we know, however, there is no safe attachment time for a tick.

DENYING LYME THROUGH GEOGRAPHY Stating that ~500,000 people annually are diagnosed and treated for Lyme, Dr. Marx then showed the map of Lyme’s geographic distribution, which only singles out 15 states in yellow — 95% of cases. The old adage, a picture is worth 1,000 words is often used in advertising to communicate ideas that in seconds convey the advertisers message which is, buy what I am selling, no time for the facts. Looking at this map quickly, a harried health care provider or anyone for that matter, can readily conclude Lyme is not a problem in other states. Tens of thousands of Lyme patients have been victims of that erroneous message and continue to be denied or have delayed diagnosis and treatment because of the false assumption that Lyme “doesn’t exist” in their state.  As pointed out by MyLymeData Patient Registry, 72% of patients see four or more physicians before diagnosis and 35% see more than 10. Much of that undoubtedly relates to diagnosis by geography, since patients in low incidence states are often forced to search everywhere in-state to find a doctor not afraid and willing to diagnose and treat Lyme but often end up traveling cross country to get help for their disease.

The WG Access to Care 2020 Subcommittee, which I co-chaired, reported to the HHS WG that some of the states believed by CDC to be low incidence for Lyme have some of the highest numbers of insurance claims for Lyme. Citing a Wall Street Journal article featuring a Fair Health study which used a data base of 150 million privately insured individuals, the report indicated in 2016, North Carolina reported 32 Lyme cases to the CDC but made 88,539 health-care claims for a Lyme diagnosis. Also in the report, “in California in 2016, there were only 90 CDC surveillance cases, while Quest Diagnostics (which is just one of the seven most-used Lyme disease testing labs) reported 483 positive tests, and FAIR Health Data showed insurance claims in the state at close to 47,000, making California one of the top five highest states for Lyme disease insurance claims in the U.S.”

Dr. Marx pointed out there are case reports in other states but most are travel related. Several years ago I provided CDC with their own reported case numbers over time from the “other than 15 states.” I asked CDC to provide me with data they had proving that most of these cases were travel related. The response: they did not have such data. On the 2nd Working Group, I tried to introduce a Recommendation to Congress that CDC go to the Council of State and Territorial Epidemiologists−who allegedly have control over surveillance criteria guidelines−and ask them to examine the validity of the “diagnosis by geography” portion of the Lyme surveillance criteria based on the inability of patients to get diagnosed due to it. CDC and other agencies at the WG table refused to agree to that reasonable request being put into a recommendation. The only conclusion I can come to is, government does not want Lyme disease to be found outside certain boundaries. They will do and have done everything in their power to prevent it from being found outside their proscriptive boundaries—turning their backs on patients who live there. 

ONE DOSE OF DOXY SOLUTION Lyme disease prophylaxis was another topic included in the webinar. In order for a doctor to determine if prophylactic treatment should be used for a bite, 5 questions were listed:

  1. Where the tick bite occurred, are ticks likely to be infected with Borrelia burgdorferi? (Geography)
  2. Was tick removal within 72 hours?
  3. Was the tick body flat or engorged?
  4. Was it an Ixodes (blacklegged tick) tick?
  5. Is doxy safe for the person?

Regarding the above questions, many people, including some physicians, do not know what a flat vs. engorged tick looks like. I have even heard stories of doctors telling patients you cannot get Lyme disease from a big tick, which at times, turned out to be a partially engorged tick. Many scientists who work daily with ticks are reluctant to even identify a tick unless they see it physically, not from a picture, and now doctors are asked to identify ticks and determine engorgement. When I pointed out a fully engorged tick hanging from my mom’s leg in the hospital years ago, the doctor told me it was a mole. I was certainly surprised to find moles had 8 legs…. As to attachment time, most people remove a tick immediately upon finding it and have no idea how long it has been attached.

The discussion of prophylaxis centered totally on one dose doxy. As I listened to this discussion, I could “see” the treating doctors and advocates cringing as I was at the CDC trying to justify using that protocol. Although they promote that protocol, Dr. Marx indicated CDC does not recommend tick testing for pathogens as a tool–results can lead to decisions about antibiotic treatment without conducive evidence of patient infection. Interesting statement, since arguments could be and have been made that current tests required by CDC don’t provide that evidence either.  Although there may be some downsides to tick testing, the only tool in CDC’s toolbox is the one dose of doxy protocol—based on a single human trial that did not conclude that single dose doxy could prevent Lyme disease only that it prevented an EM rash in a small group of people. Prescribing one dose of doxy may also interfere with any later testing results.

One of the slides contained a link (I accessed after the webinar) entitled Guidance for Clinicians: Recommendations for Patients after a Tick Bite. There is a graphic for tick removal then a statement saying “Save the tick for species ID and degree of tick engorgement (important when determining eligibility for Lyme disease prophylaxis).”  Under that is “Post- exposure prophylaxis for Lyme disease,” the circumstances explaining when a single dose of doxy can lower the risk of Lyme disease– if:

  • the bite occurred in a high incidence state [only map with 15 states highlighted is shown] or in an area where >20% of ticks are infected with Bb—consult your local health department for details
  • the tick can be identified based on adult or nymph blacklegged tick
  • the estimated attachment time >36 hours based on degree of engorgement
  • prophylaxis can be started within 72 hours
  • the patient has no contraindication to doxycycline.

Additionally included in the pdf is a ruler, conceivably for the doctor to judge the  size of engorged ticks based on feed time. Almost sounded to me like CDC does not really want to promote one dose doxy as prophylaxis.

VACCINES Patients, advocates and doctors have been concerned that vaccine development has been the force behind refusal to develop safe and effective protocols to treat patients. It certainly has influenced Lyme disease testing protocols− almost the same protocols developed at the 1994 Dearborn conference exist today, with Western Blot banding requirements (“CDC bands”) for Lyme disease influenced by the then upcoming vaccines, especially LYMErix. Bands never changed even after LYMErix was pulled from the market by its manufacturer, citing poor sales. The CDC webinar described LYMErix vaccine as both safe and effective, stating it was pulled from the market but no mention of why.  Dr. Marx indicated up and coming vaccines could be available in the future. No mention was made of the one in current FDA trials having an Osp A base, yet many felt and still feel that an Osp A base contributed to problems of vaccine recipients that led to the manufacturer withdrawing the LYMErix vaccine.

After 46 years of Lyme disease, the CDC and NIH do not yet know how to accurately diagnose Lyme or treat it successfully, especially when it has prolonged symptoms after 2 weeks of doxycycline.  Vaccines are certainly important tools when proven to be safe and effective and when they have been developed by a transparent process not being run by the vested interests themselves. The CDC wants to have those vaccines at all costs—with billions made by manufacturers of new vaccines, even when there are potentially viable treatments in sight for Lyme but not being explored.  NIH is no different in that regard.

RASH, TREATMENT, TESTING You can listen to the webinar sections yourself about the EM rash issue, treatment, and testing. Most are too painful for discussion here by me, but I mention two issues. So much emphasis is placed upon the rash in diagnosis, so rashes should have been explained and pictures shown not just with a central clearing (bull’s eye), but also without central clearing (not a bull’s eye).  On one of the testing slides, it said, “should patients be tested for Lyme disease: look at pretest probability.” Then, doctors should ask if patients have been in an area where Lyme is common, were likely exposed to ticks, and have symptoms characteristic of Lyme disease. If the answer to any of these questions is no, pretest probability is low, and testing is not advised. If all three answers are yes, moderate to high probability exists, and testing may be helpful depending on disease stage.  Based on that scenario, no testing for those in low incidence states for sure.  

COINFECTIONS   Webinar co-infection advice is to talk to your local health department about them in your area. I personally ask that you please contact CDC if you do contact your health department and let CDC know how that advice works.  Since testing of ticks has not been undertaken in many states, and some coinfections are not known or even reportable, this advice can also be a deterrent to patients receiving proper diagnosis and treatment.

NIH STUDIES The CDC cites only NIH studies of long-term antibiotic treatment and their conclusions which do not show benefit but can be harmful. No mention of recent research which indicates otherwise or of rebuttals to those studies. At the 2nd term HHS WG table, I fought tenaciously but successfully to keep in the 2020 Report to Congress papers/opinions which contradicted those NIH findings, as NIH and CDC battled to keep them out.

HOW TO CARE FOR THOSE ON NOT RECOMMENDED TREATMENTS The slide 43 minutes in on “How I can care for my patients who are receiving treatments that are not recommended for Lyme disease,” will most likely be the last straw for many. Not recommended by whom? Clearly there are published guidelines that meet National Academy of Medicine (formerly IOM) specs that support clinical judgement in treatment of Lyme disease.  The first bullet of six is “to listen to the patient’s story,” the last bullet is to ‘evaluate the risk of Lyme disease and consider an alternate diagnosis.” This slide is accompanied by Dr. Marx’s commentary not on the slide, “the goal is to demonstrate empathy and compassion….” In my 37 years of Lyme advocacy, I haven’t seen that happen yet, and treatments are still withheld.

BOTTOM LINE The non-inclusion of patient input into this webinar is probably a good thing after all. No self-respecting patient or advocate would want their names tied to this webinar, especially when they read the slide below—a slap in the face to the hundreds of thousands of patients whose lives have been saved or vastly improved with long term-treatment and to the brave physicians who put their practices on the line to help patients get better.

Post-Treatment Considerations (slide)

  • There is no proven treatment for post treatment symptoms:
    • Additional prolonged antibiotics have not been shown to improve long-term outcomes
  • Long term antibiotic therapy has the potential to cause serious side effects, including:
    • infectious diarrhea
    • antibiotic resistance
    • line associated infections

More than two courses of antibiotics are NOT recommended for the treatment of Lyme disease.

RESPONSIBILITY Who’s responsible for this decades-long Lyme fiasco?  The blame must be laid at the feet of an alliance of public health and some powerful medical “experts,” who have allowed cases to go from 9,908 reported in 1992, to an estimated 500,000 cases annually. While actively seeking to build public trust with the LymeX public-private partnership, public health has not even lived up to its commitment to recommendations they supported on the WG, like CDC including patient input into educational programs.  Yet they court the public/advocates so there will be funds allocated to government agencies to ostensibly provide help to patients. Then they use our public dollars to deny many patients the ability to get early diagnosis and appropriate treatment. Disingenuous? With so many lives at stake, that word seems too kind.

Click here for CDC slides and for a video of the webinar

Click here for Tick-Borne Disease Working Group 2020 Report to Congress

Click here for Pat Smith’s minority response: Effect of Geographic Restrictions on Lyme Diagnosis

 

 

 

 




Sue Faber, RN, BScN Guest Blog – Lyme & Pregnancy

May Awareness LDA Guest Blogger

SueFaberbyStef&EthanSue Faber is a Registered Nurse (BScN) and Co-founder and President of LymeHope, a not-for-profit organization in Canada.  Sue’s specific area of expertise and research is in the compilation and analysis of the literature that exists on maternal-fetal transmission of Lyme and congenital Lyme borreliosis; amplifying, supporting and powering urgent research initiatives to investigate this alternate mode of transmission with the ultimate goal of opening new doors to ensure that children and families affected are able to access appropriate care, treatment, and support.

In 2018, Sue co-authored a nursing resolution for the Registered Nurses Association of Ontario – based on the needs and voiced concerns of Canadians  with Lyme disease coast to coast.  ‘Patient First Treatment for Ontarians with Lyme Disease’– which was passed at the annual 2018 AGM in Toronto.    Sue was awarded the RNAO HUB Fellowship award in 2019.  Sue is honored to be an advisor to the newly formed advocacy group Mothers Against Lyme and has spoken at various conferences on maternal-fetal transmission of Lyme including ILADS (2019), LymeMIND (2019, 2020), NE Ohio Lyme Symposium,  Lyme WNY Symposium and Target Lyme (Ontario).   Sue is honored to collaborate with colleagues from McMaster Midwifery Research Centre in new ground-breaking research on Lyme and Pregnancy.

Sue is firmly committed to transparent and collaborative partnerships with governments, academia, research institutions, healthcare colleagues, and industry stakeholders, to collectively identify challenges, knowledge gaps, and fresh opportunities, to examine and develop transformative health policy, best practice guidelines, and research priorities, which are anchored in patient voice, values, and priorities.

Lyme and Pregnancy:  A Hopeful and Tangible Path Forward

My History  I’ll never forget the day at the end of January 2017 that I received an official letter from my local public health department.  The letter was in response to my requests for a meeting with senior management, to alert them to positive test results for Lyme disease for both myself and one of my daughters and to discuss my concerns that I may have transmitted this infection to her in-utero.   A year earlier I had tested two-tier positive for a European strain of Lyme in Canada – after years of complex multi-system medical symptoms which were fully investigated by multiple medical specialists, without any definitive answers.   I had no recall of a tick bite or an erythema migrans rash and thus tickborne disease had never been considered as a differential diagnosis by my medical team.  As a trained ER nurse, I knew nothing about Lyme disease. 

It was a stroke of luck that my primary doctor decided to test me for Lyme after every other possible diagnosis had been ruled out.  The test was positive. My eventual diagnosis of late-stage disseminated Lyme disease by a Canadian infectious disease physician was initially a relief as I now had a name to my illness and what I thought would be a defined path to recovery and healing.  Little did I know that this diagnosis would be the start of a journey into advocacy – one which I have likened to climbing up a steep mountain – without a map or guide – trusting and hoping that one day, I’d make it to the top.

As a Registered Nurse I am extensively trained in evidence-based practice and problem-based learning which has put me in good stead after receiving my Lyme disease diagnosis. I started delving into the published literature on Lyme disease and soon discovered the multi-system complexities of Lyme disease with some researchers identifying striking similarities to syphilis. [i] [ii]  Soon thereafter, I discovered the first published case report that Lyme disease could be transmitted from a mother to her baby in-utero in a paper titled ‘Maternal-fetal transmission of the Lyme disease spirochete, Borrelia burgdorferi’.[iii]  My heart started to race, I was nauseated and tears started to fall down my cheeks – could this mean that my precious daughters were also impacted?   Like most other aspects of Lyme, I would soon learn that the issue of maternal-fetal transmission was very controversial.

The onset of my symptoms was gradual and predated all of my pregnancies including one first trimester pregnancy loss.  All my daughters had struggled with varying complex medical issues from birth which included jaundice, severe colic, high fevers, myocarditis, atypical seizures, severe OCD, night terrors, anxiety, joint pain, learning difficulties, abdominal pain, strange rashes, speech delay, severe headaches, frequent pneumonia and double vision.  Each child had different clinical manifestations with one common theme – there were no definitive answers as to why.  Could tickborne infection transmitted in-utero be contributing to their illnesses?

My infectious disease physician who was treating me at the time never mentioned that Lyme could be transmitted in pregnancy. Later after I asked, they acknowledged that yes, there were case reports.  One of my daughters also tested two-tier positive in Canada for a European strain of Lyme disease – except unlike me who had lived in Asia and travelled throughout Europe where European strains of Lyme are predominant, she hadn’t.  We both had positive tests for a European strain of Lyme disease and this was why I had asked for a meeting with my local public health unit.  I was hoping they would be interested in investigating the possibility of maternal-fetal transmission. 

Instead, the letter I received back was disheartening and disconcerting.  I was advised that despite having tested positive in Canada, using two-tier criteria, both our cases would not be counted in Canadian surveillance statistics because our symptoms were ‘non-specific’ and we didn’t have a ‘clear onset’ or ‘reliable travel history.’  Furthermore I was informed that they had completed ‘a significant amount of research and no scientific evidence to support congenital Lyme in the scientific literature was found.’ 

—————————————–

Starting a Non-Profit: LymeHope  By this time, I had read more primary research papers reporting transmission of Lyme from mother to baby in-utero [iv] [v] including a report issued by the World Health Organization[vi] and Health and Welfare Canada[vii] clearly documenting the risk of this alternate mode of transmission and possible adverse pregnancy outcomes.  Shortly thereafter, myself and colleague Jennifer Kravis co-founded the Canadian not-for-profit organization LymeHope.[viii] 

In February 2017, we started a ‘Ticking Lyme Bomb’ petition[ix] which now has over 86,600 signatures and over 17,000 personal comments from across Canada.  We also arranged meetings with Federal politicians from all parties, organized a bi-partisan round-table in Ottawa on Lyme disease,[x] testified at a Parliamentary Health Committee hearing[xi] and met with senior executives, scientists and officials from the Public Health Agency of Canada and Health Canada.  We were invited to meet with then Federal Minister of Health[xii] and then leader of the Conservative Party of Canada – each time drawing attention to the many complex, serious issues faced by Lyme sufferers across Canada including the documented risk of maternal-fetal transmission.  Each meeting represented another step ‘up the mountain’ with goals of identifying and initiating meaningful, collaborative solutions including innovative research – anchored in meaningful patient engagement and triaged by patient priorities.

In 2018 I co-authored a resolution on Lyme disease which was passed by the Registered Nurses Association of Ontario (RNAO) membership titled: ‘Patient First Treatment for Ontarians with Lyme Disease.’ [xiii]  This resolution highlights the multi-faceted issues faced by Canadian Lyme sufferers and the RNAO would later feature our resolution in an article[xiv] in their Registered Nurse Journal. I am so grateful for the ongoing support of the RNAO and especially the brilliant leadership of Dr. Doris Grinspun who leads the organization.  I’ll never forget her addressing the RNAO membership at the 2018 Annual General Meeting in Toronto – this was the meeting in which our resolution was later being presented for vote.  She shared in general terms that ‘disruption’  may be necessary when confronting obstacles which stand in the way of Canadians accessing appropriate health care.   As she spoke, tears flowed down my cheeks as I recalled the numerous letters, petition comments, personal testimonies and cries for help from my fellow Canadians – adults[xv] and children[xvi] alike – struggling to access appropriate care[xvii] and treatment for Lyme disease within Canada.[xviii]  

I personally didn’t want to be labeled as a ‘disruptor’ but rather a bridge-builder and peace-maker.  I so badly wanted meaningful, sustainable change for Canadians with Lyme disease.  However, I have since learned that ‘disruption’ is sometimes necessary if it leads to re-calibration, innovation and opens new opportunities for critical thinking, trust-building, identifying strategic research initiatives and initiates forward momentum.  Many issues around Lyme disease urgently need re-investigation including adequate testing, treatment and alternate modes of transmission.  New research continues to emerge which challenges the status quo, such as the persistence of the Lyme spirochete despite antibiotic treatment.[xix]  [xx]  This is an issue which advocates, clinicians and scientists have identified for decades and is anchored in findings from hundreds of peer-reviewed papers.[xxi]  What is most important is that new research on Lyme disease must be patient relevant.  In a 2016 CMAJ editorial article by Kristen Patrick[xxii], she states, ‘For patient-relevant research to be meaningful, patient and public engagement in research cannot comprise a token lay person on a research ethics review board.  Patients and their caregivers must be involved in decision-making at all steps in the research process, from design, to choice of primary and secondary outcomes, through dissemination and implementation.’

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National Media Coverage  In 2019, CTV National News[xxiii] highlighted our advocacy work regarding maternal-fetal transmission of Lyme disease and the importance of initiating new research collaborations on this important, under-studied issue.  This national media coverage also highlighted a systematic review on gestational Lyme[xxiv] which had been authored by scientists from both the Public Health Agency of Canada and CDC.  This review included a meta-analysis which identified a significant difference in the frequency of adverse outcomes between treated and untreated pregnancies affected by Lyme disease.  

In 2020, an advocate shared with me a discovery that three Federal Canadian agencies including: Health Canada[xxv], Public Health Agency of Canada[xxvi] and Occupational Health and Safety Canada,[xxvii] had historically acknowledged the risk of adverse outcomes associated with Lyme and pregnancy and/or maternal fetal transmission of Lyme on their respective websites.  In all three cases, over a period of several years, this precautionary guidance was subsequently removed.   For years,  we had been advocating for acknowledgement of these issues which had already been publicly communicated!

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20 Years of Research Has Not Overtuned Publish Risks Adverse Outcomes  As there has been no new research in over 20 years which has negated, questioned or overturned the published findings of earlier investigators, these precautionary statements should be clearly communicated.  This is highlighted by the tenants of the Precautionary Principle and clearly communicated in a Health Canada Framework on Managing Health Risks which states: [xxviii] ‘A key feature of managing health risks is that decisions are often made in the presence of considerable scientific uncertainty. A precautionary approach to decision making emphasizes the need to take timely and appropriately preventative action, even in the absence of a full scientific demonstration of cause and effect.’ Both the public and healthcare practitioners should be made aware of these documented risks of adverse pregnancy outcomes and of in-utero transmission of Lyme itself, even if considered rare.  I have asked Canadian Public Health Agency officials for rationale as to why this guidance was removed and continue to await an evidence-based response. 

I trust that the Public Health Agency of Canada and Health Canada will follow the CDC[xxix] and NIH[xxx] in updating their public guidance on Lyme and pregnancy to acknowledge that YES, Lyme can be transmitted in utero.  With this simple, evidence-based acknowledgement as a starting point – new doors WILL open for urgent, multi-disciplinary research to better understand this alternate mode of transmission and open new avenues for families and children impacted to receive the medical care and support they need and deserve.

——————————————

So where do we go from here?  There is action, HOPE and meaningful forward momentum!  In Canada, a brand new research project on Lyme and Pregnancy was initiated in the fall of 2020 by McMaster University Midwifery Research Centre[xxxi] and remains open for participants from the US, Canada and globally, I am thankful to part of this research team.  The Canadian Association of Schools of Nursing (CASN) has just released free, open access, online resources including online learning modules for nurses and other professionals working with clients, communities and populations facing climate-driven infectious diseases.[xxxii]  This innovative resource acknowledges both the risk of maternal-fetal transmission of Lyme disease and potential for adverse pregnancy outcomes and also includes a section titled: ‘Living with Climate-Driven Vector-Borne Disease’ which highlights patient advocacy efforts, patient stories and patient centered resources.[xxxiii]  I am so proud that nurses are listening, engaging and paving an inclusive way forward which respects, empowers and includes patients.

In the US, the Cohen Foundation[xxxiv] continues to lead with generous philanthropy for Lyme disease research, innovation and collaboration.  For the last two years I have been honored to represent LymeHope as a panelist in the  LymeMind Conference[xxxv], speaking directly to the issue of maternal-fetal transmission of Lyme[xxxvi] and alongside other experts, bringing this important, understudied alternate mode of transmission back into the forefront of academia and government.  I recently spoke at a webinar hosted by Project Lyme and Mothers Against Lyme Disease [xxxvii] where I shared an overview of the literature on Lyme and Pregnancy[xxxviii]  and also shared several research recommendations for a path forward. 

The recent US HHS announcement of LymeX, in partnership with the Steven and Alexandra Cohen Foundation[xxxix] is an extraordinary step forward in bringing together diverse stakeholders including government, non-profits, academia, advocates, patients and industry to ‘accelerate Lyme innovation.’  A recent Notice of Special Interest by the NIH for improving outcomes for maternal health[xl] included ‘development and validation of diagnostics for gestational Lyme disease, which can adversely impact maternal health and pregnancy outcomes.’  All of these things are indicators of positive forward momentum and provide me with renewed Hope that new science, innovation and collaboration will lead the way and open new doors.

Four years after starting Lyme advocacy I believe that we are collectively reaching a Lyme tipping point and patients and advocates are being respected, welcomed and heard.  I admit, there have been times I have been discouraged, exhausted, frustrated and even wanted to step away from leadership.  I’m so thankful for many who encourage me to keep going.  Advocacy in a field as contentious as Lyme disease can be a lonely, misunderstood place.  Pushing for change can be met with skepticism and silence.   If we continue to take one step and another, anchored in evidence, leaning on scientific inquiry and partnered with respectful dialogue and meaningful collaboration – we will make it up to the top of the mountain. 

I really look forward to the view from the top of the mountain and one day reaching the pinnacle and planting a flag which represents the hard work and dedication of advocates, patients, scientists, researchers, not-for-profits, clinicians and government officials – all determined to make a lasting difference on behalf of Lyme sufferers . For all the families impacted by Lyme disease and those concerned that in-utero transmission may be a factor in their child’s illness – don’t give up!  I wish I could give you a big Mama-bear hug – we must keep speaking out and sharing our stories, concerns and ideas for solutions.  Our collective voice is being heard and acknowledged and I truly believe that help is on the way.


Footnotes

[i] Hercogova J, Vanousova D. Syphilis and borreliosis during pregnancy. Dermatol Ther. 2008 May-Jun;21(3):205-9. doi: 10.1111/j.1529-8019.2008.00192.x. PMID: 18564251.

[ii] Miklossy, J. (2008). Biology and Neuropathology of Dementia in Syphilis and Lyme Disease. Handbook of Clinical Neurology, 825–844. doi:10.1016/s0072-9752(07)01272-9 

[iii] Schlesinger PA, Duray PH, Burke BA, Steere AC, Stillman MT. Maternal-fetal transmission of the Lyme disease spirochete, Borrelia burgdorferi. Ann Intern Med. 1985 Jul;103(1):67-8. doi: 10.7326/0003-4819-103-1-67. PMID: 4003991.

[iv] Weber K, Bratzke HJ, Neubert U, Wilske B, Duray PH. Borrelia burgdorferi in a newborn despite oral penicillin for Lyme borreliosis during pregnancy. Pediatr Infect Dis J. 1988 Apr;7(4):286-9. doi: 10.1097/00006454-198804000-00010. PMID: 3130607.

[v] MacDonald AB. Gestational Lyme borreliosis. Implications for the fetus. Rheum Dis Clin North Am. 1989 Nov;15(4):657-77. PMID: 2685924.

[vi] World Health Organization, Geneva. Weekly Epidemiological Record. No. 39. 26 September 1986. Page 297-304.

[vii] Health and Welfare Canada. Lyme Disease in Canada. Canada Dis Wkly Report, June 4, 1988.

[viii] LymeHope:  https://www.lymehope.ca/

[ix] Ticking Lyme Bomb Petition: https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now

[x] MP Round Table and MP engagement.  https://www.lymehope.ca/advocacy-updates/update-on-mp-round-table-and-mp-engagement-regarding-lyme-disease-in-canada

[xi] Standing Committee on Health, Tuesday, June 6th, 2017.  Evidence. https://www.ourcommons.ca/DocumentViewer/en/42-1/HESA/meeting-59/evidence

[xii] Kingston, Anne.  How the Impatient Patient is Disrupting Medicine.  Macleans Magazine,  Oct, 2017. https://www.macleans.ca/society/health/how-the-new-impatient-patient-is-disrupting-medicine/

[xiii]https://myrnao.ca/sites/default/files/attached_files/Resolution%202018%20Final%20from%20AGM%20with%20amendments%20for%20website.pdf

[xiv]Registered Nurses Association of Ontario. ‘Ticking Lyme Bomb, May/June 2018. https://rnao.ca/sites/rnao-ca/files/RNJ-MayJune2018_ticking_lyme_bomb.pdf

[xv]Patient Testimonies at 2016 Federal Framework on Lyme Disease. https://www.canada.ca/en/public-health/services/diseases/lyme-disease/federal-framework-lyme-disease-conference/audio-recordings/public-forum-1.html

[xvi] Stimers, Daniel. Lyme Disease MP Roundtable Address, May 2018.  https://www.youtube.com/watch?v=Td-Vw-V7kGU&feature=youtu.be

[xvii] Gaudet EM, Gould ON, Lloyd V.  Parenting When Children Have Lyme Disease:  Fear, Frustration, Advocacy.  Healthcare 2019, 7(3), 95: https://doi.org/10.3390/healthcare7030095

[xviii] Boudreau CR, Lloyd VK, Gould ON. Motivations and Experiences of Canadians Seeking Treatment for Lyme Disease Outside of the Conventional Canadian Health-Care System. J Patient Exp. 2018;5(2):120-126. doi:10.1177/2374373517736385

[xix] Sapi E, Kasliwala RS, Ismail H, Torres JP, Oldakowski M, Markland S, Gaur G, Melillo A, Eisendle K, Liegner KB, Libien J, Goldman JE. The Long-Term Persistence of Borrelia burgdorferi Antigens and DNA in the Tissues of a Patient with Lyme Disease. Antibiotics (Basel). 2019 Oct 11;8(4):183. doi: 10.3390/antibiotics8040183. PMID: 31614557; PMCID: PMC6963883.

[xx] https://news.tulane.edu/pr/study-finds-evidence-persistent-lyme-infection-brain-despite-aggressive-antibiotic-therapy; https://www.frontiersin.org/articles/10.3389/fneur.2021.628045/full

[xxi]Peer-Reviewed Evidence of Persistence of Lyme Disease Spirochete Borrelia burgdorferi and Tick-Borne Diseases https://www.ilads.org/wp-content/uploads/2018/07/CLDList-ILADS.pdf

[xxii] Patrick, K. Realizing the Vision of Patient Relevant Research. CMAJ, Vol 188, Issue 15, Oct 2016. https://www.cmaj.ca/content/188/15/1063.full

[xxiii] CTV National News.  Mothers on a mission to prove Lyme disease can be passed to an unborn child. https://www.ctvnews.ca/health/mothers-on-a-mission-to-prove-lyme-disease-can-be-passed-to-unborn-child-1.4261403

[xxiv] Waddell LA, Greig J, Lindsay LR, Hinckley AF, Ogden NH (2018) A systematic review on the impact of gestational Lyme disease in humans on the fetus and newborn. PLoS ONE 13(11): e0207067. https://doi.org/10.1371/journal.pone.0207067

[xxv] Health Canada. (October 2006) https://web.archive.org/web/20061018070947/http:/www.hc-sc.gc.ca/iyh-vsv/diseases-maladies/lyme_e.html

[xxvi] Public Health Agency of Canada (March 2009)

https://web.archive.org/web/20090307034620/http:/www.phac-aspc.gc.ca/id-mi/lyme-fs-eng.php

[xxvii]Canadian Centre for Occupational Health and Safety (May 1999)

https://web.archive.org/web/19990508215316/http:/www.ccohs.ca/oshanswers/diseases/lyme.html

[xxviii] Health Canada Decision making framework identifying, assessing and managing health risks, August 1, 2000: https://www.canada.ca/en/health-canada/corporate/about-health-canada/reports-publications/health-products-food-branch/health-canada-decision-making-framework-identifying-assessing-managing-health-risks.html#a13

[xxix] CDC. Pregnancy and Lyme Disease: https://www.cdc.gov/lyme/resources/toolkit/factsheets/Pregnancy-and-Lyme-Disease-508.pdf

[xxx] Lyme Disease, the Facts, the Challenge. NIH Publication No. 08-7045.  2008.

https://permanent.fdlp.gov/lps81243/LymeDisease.pdf

[xxxi] McMaster University Midwifery Research Centre.  ‘Health Outcomes of people with Lyme disease during pregnancy.’

English Version:  https://obsgynresearch.mcmaster.ca/surveys/index.php?s=MN9CCXDTW9

French Version: https://obsgynresearch.mcmaster.ca/surveys/?s=KWJT9K9TR9

[xxxii] Canadian Association of Schools of Nursing. Nursing and Climate Driven Vector Borne Disease.  https://vbd.casn.ca/

[xxxiii] Canadian Association of Schools of Nursing. Living with Climate Driven Vector Borne Disease. https://vbd.casn.ca/index.php/resources/living-with-climate-driven-vector-borne-disease/

[xxxiv] Cohen Lyme and Tickborne Disease Initiative:  https://www.steveandalex.org/ticks-suck/

[xxxv] LymeMIND: https://lymemind.org/

[xxxvi] 5th Annual LymeMIND Virtual Conference 2020: Mothers and Children Panel. https://www.youtube.com/watch?v=gevtoKkzS2Y&t=8s

[xxxvii] https://lymediseaseassociation.org/about-lyme/pregnancy-and-lyme/lyme-disease-pregnancy-research-opportunities-webinar/

[xxxviii] https://lymediseaseassociation.org/wp-content/uploads/2021/05/SueFaber_Maternal-Fetal-Transmission-of-Lyme-Research-Gaps-and-Next-Steps_April-29-2021_Webinar.pdf

[xxxix] LymeX initiative: https://www.hhs.gov/cto/initiatives/innovation-and-partnerships/lyme-innovation/lymex/index.html

[xl] Notice of Special Interest (NOSI): Small Business Initiatives for Innovative Diagnostic Technology for Improving Outcomes for Maternal Health

https://grants.nih.gov/grants/guide/notice-files/NOT-EB-21-001.html

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 




Kenneth Liegner, MD – Lyme & TBD: Where Are We, 2021?

May Awareness LDA Guest Blogger

Dr. Kenneth Liegner, MD

Dr. Kenneth Liegner is a Board Certified Internist with additional training in Pathology and Critical Care Medicine, practicing in Pawling, New York. He has been actively involved in diagnosis and treatment of Lyme disease and related disorders since 1988. He has published articles on Lyme disease in peer-reviewed scientific journals and has presented poster abstracts and talks at national and international conferences on Lyme disease and other tick borne diseases. He has cared for many persons seriously ill with chronic and neurologic Lyme disease. His work has focused on the serious morbidity and (occasional) mortality that can eventuate from this aspect of the illness. He has emphasized the urgent need for widespread clinical availability of improved methods of diagnostic testing and for development of improved methods of treatment for Lyme disease in all its stages. He holds the first United States patent issued proposing application of acaricide to deer for area-wide control of deer-tick populations as a means of reducing the incidence of Lyme disease. He has authored In the Crucible of Chronic Lyme Disease – Collected Writings & Associated Materials, a documentational history of the struggle to characterize the nature of Lyme disease in the late 20th and early 21st centuries, published November 2015 (www.inthecrucibleofchroniclymedisease.com).

He served two terms on the Board of Directors of The International Lyme and Associated Diseases Society (www.ilads.org), is on the Scientific Advisory Board of the Lyme Disease Association (www.lymediseaseassociation.org), and is a member of the American Medical Association (www.ama-assn.org), the Westchester County Medical Society (www,wcms.org), the Medical Society of the State of New York (www.mssny.org) and The American Association of Physicians and Surgeons (www.aapsonline.org). He is on the staff of Northern Westchester Hospital Center in Mount Kisco, New York (Northwell Health System) and the Sharon Hospital in Sharon, Connecticut (Nuvance Health System).

He was the first physician to apply disulfiram in the treatment of Lyme disease and published his experience with his first three patients in the peer-reviewed journal Antibiotics, May 2019 (https://www.mdpi.com/2079-6382/8/2/72) and reported his first 3 years’ experience with the drug in December 2020 (Antibiotics 2020, 9(12), 868; https://doi.org/10.3390/antibiotics9120868) He was co-author on a landmark pathologic study of tissues from a person with chronic Lyme disease (https://www.mdpi.com/2079-6382/8/4/183) and co-author of the ILADS evidence-based definition of chronic Lyme disease (https://www.mdpi.com/2079-6382/8/4/269).

Lyme & Tick- & Vector-Borne Disease: Where Are We, May 2021?

The COVID-19 Pandemic has overwhelmed the U.S. of A. and the world and has temporarily overshadowed another ‘shadow on the Land’* – the global pandemic of Lyme disease.

As city denizens flee for more rural areas in efforts to minimize the risks of acquiring COVID-19, they may be less mindful of the risks ticks pose. Deer tick bites often go unnoticed, yet they can transmit the agent of Lyme disease and a range of other infectious diseases:  non-Lyme borrelioses (e.g. tick-borne relapsing fever due to the spirochete Borrelia miyamotoi), Powassan virus, anaplasmosis (a Rocky Mountain Spotted Fever-like illness) and babesiosis. Bartonellosis may also occur in persons with Lyme disease (whether tick- or flea-transmitted or due to a cat scratch), complicating the clinical picture.  Onset of Lyme disease can be insidious and tests not always reliable so there can be delays in diagnosis which allow borrelial infections to become deeply entrenched and more difficult to treat.

The HHS Tick-borne Diseases Working Group with very significant input by patients, advocates and some treating clinicians has developed important perspectives to the problems posed by tick-borne infections and is serving to ‘move things forward’. 

Although there has been some increased Federal funding for Lyme and other tick-borne diseases recently, as well as influx of funds from charitable foundations and private donors, the total commitment to solving these complex problems had been inadequate: consistent funding for H.I.V./A.I.D.S. greater than $1 billon/year for decades has enabled real progress in diagnosis and therapy.  An infection that was basically a death sentence is now eminently manageable with oral anti-viral agents. Affected individuals can enjoy a good quality of life with a life-span approximating those not infected.  Annual funding for Lyme disease by comparison, has been paltry.

Sadly, despite decades of advocacy we still lack a clinically available, well-validated and reproducible direct detection test for Lyme disease that can measure ‘borrelial load’ (analogous to measures of ‘viral load’ so very useful in the management of H.I.V./A.I.D.S.).

Likewise, attention to the development of improved therapeutics has been grossly inadequate at the Federal level, progress stymied by the damaging dogma: chronic Lyme disease does not exist.

In the past decade and largely due to funding from private foundations and patient advocacy groups, innovative forays in to repurposing of FDA-approved agents already in the United States Pharmacopeia and novel combinations of pharmaceutical as well has herbal-derived principles in vitro have identified promising new approaches which are beginning to be explored clinically, mostly by individual practitioners.

This ought to be vastly expanded and undertaken as systematic and formal clinical trials against ‘comparator’ agents such as ‘standard’ recommended antibiotherapies.  Such trials are costly, however, would lead to more ‘robust’ data that are more than merely ‘anecdotal’.   This merits funding with Federal dollars.  Academic medical centers are well-equipped and well-accustomed to running such randomized controlled trials.  However, such trials could also be undertaken ‘in the community’ through clinicians actually caring for patients with chronic tick-borne illnesses. 

I have likened practitioners caring for patients with the ‘big 3’ B’s  of tick- and vector-borne diseases (Borreliosis, Babesiosis and Bartonellosis) to playing 3 simultaneous games of chess in 3 dimensions against 3 opposing Grandmasters.  It is a great challenge for practitioners.  It is not boring!  But when one successfully enables patients to improve their quality of life and sometimes (with shared decision-making, luck, skill and patient & practitioner perseverance) to make a full or substantial recovery, well, it is very gratifying.

Lots of work remains to be done!  Let us all resolve to do that work!  Let’s cooperate!  Let’s get busy!

*the title of United States Public Health Service Surgeon General (1936-1948) Thomas Parran’s influential book concerning syphilis

Kenneth B. Liegner, M.D.
Pawling, New York
April 29, 2021

 




Adrian Baranchuk, MD, Guest Blog – Lyme Carditis 2021 Update

May Awareness LDA Guest Blogger

Adrian_Baranchuk_Photo_2020

Adrian Baranchuk MD, FACC, FRCPC, FCCS, FSIAC is Professor of Medicine at Queen’s University, Kingston, Ontario, Canada. He is Editor-in-chief, Journal of Electrocardiology; Vice President, International Society of Holter and Non-Invasive Electrocardiology (ISHNE); Secretary, Interamerican Society of Cardiology (SIAC); Co-Director, ECG University; Past President, International Society of Electrocardiology (ISE); and Director, NET-Heart Project (Neglected Tropical Diseases and other Infectious Diseases affecting the Heart).

Lyme Carditis: Update 2021. An Evasive Diagnosis in the Time of COVID-19

Adrian Baranchuk MD, FACC, FRCPC, FCCS, FSIAC; Chang (Nancy) Wang MSc (c), MD
Department of Medicine, Kingston Health Science Center, Kingston, Ontario, Canada

Lyme disease (LD) is a tick-borne bacterial infection caused by Borrelia burgdorferi. Lyme carditis (LC) is an early-disseminated manifestation of LD, most commonly manifesting as a complete “shut-down” of the electrical system (high-degree atrioventricular block (AVB)) that can evolve rapidly over minutes, hours, or days producing severe symptoms like fainting, palpitations, shortness of breath, extreme dizziness, or sudden death (1-2).

Other cardiovascular manifestations include alterations of the “motor” of the heart (sinus node disease) (3), a disorganization of the cardiac rhythm that increases the risk of stroke (atrial fibrillation) (2), lesion in the distal cables of the heart (bundle branch blocks) (4), and different degrees of inflammation of the layers of the cardiac walls (myocarditis, pericarditis, and endocarditis) (2). Some of these manifestations could be so severe that a total dysfunction of the cardiac function occurs in a matter of hours, and the patient may die even if admitted to the best ICU in the world.

The initial symptoms of LD can be mistaken by other common infections or allergic reactions. Delayed diagnosis is one of the most important risk factors to serious LD presentations including LC in all its forms. The good news is that prompt diagnosis and appropriate antibiotic therapy links to a much better prognosis. In addition, we now know that when appropriately treated with antibiotics according to guidelines (2); there is no evidence of residual disease in the heart (5).

Most conduction abnormalities caused by LC resolve with appropriate antibiotic therapy (2).

The current COVID-19 pandemic is posing a new challenge in the diagnosis of LD. There are lots of overlapping symptoms such as: fever, malaise, generalized pain, lack of energy, etc. During these times, one would advise on ruling out COVID-19 first before embarking on any other test. However, what could we recommend in terms of confirming or ruling out LD, specifically during these challenging times?

Learning how to recognize the many presentations of LD from a clinical point of view has been published several times. It is especially important to ask about outdoor activities, history of tick bites, tick removal and dermatological rashes (remember that the classic “bull eye” is only present in about 40% of cases). Extensive dermatologic examination may be necessary. Residence in an endemic region for LD is essential for risk stratification, as these recommendations should be encouraged in all ED and family doctor offices in areas of high prevalence.

Once the diagnosis is suspected, specific interrogation should be directed to cardiovascular symptoms such as: dizziness, palpitations, fainting or near fainting, chest pain and shortness of breath. If the patient recognizes any of these symptoms, along with any other factors suggesting LD, a 12-lead ECG (the simple and unexpensive electrocardiogram) should be performed (2). Any evidence of electrical disturbance should prompt admission in hospital for a course of IV antibiotics while waiting the results of serological tests.

On the other hand, in patients presenting with unexpected high-degree AV block, clinical suspicion for LC can be assessed using the validated risk score called SILC (Suspicious Index in Lyme carditis) (6) where the acronym COSTAR (Constitutional symptoms, Outdoor activities/endemic region, Sex male, Tick bite, Age > 50, Rash) may help in determining the risk of presenting early disseminated LC.

In summary, use your clinical tools to suspect LD in the context of COVID-19 pandemic, order serological tests when appropriate, and remember to check for cardiovascular complications with a history, physical, and ECG. If evidence of LC, admit the patient to hospital with continuous cardiac monitoring and appropriate IV antibiotics. Decision for permanent pacemaker implantation should wait until completion of antibiotics as heart block in LC is often reversible. Most patients maintain normal rhythm on long-term follow-up. Avoiding unnecessary implants is crucial as most of these patients are young and active individuals.

References
1. Wan D, Blakely C, Branscombe P, Suarez-Fuster L, Glover B, Baranchuk A. Lyme Carditis and High-degree Atrioventricular Block. Am J Cardiol 2018; 26(5): 233-239
2. Yeung C, Baranchuk A. Diagnosis and Treatment of Lyme Carditis. J Am Coll Cardiol 2019; 73(6): 717-726
3. Gazendam N, Yeung C, Baranchuk A. Lyme carditis presenting as sick sinus syndrome. J Electrocardiol 2020; 59: 65-67
4. Maxwell N, Dryer M, Baranchuk A, Vinocur M. Phase 4 Block of the Right Bundle Branch Suggesting His-Purkinje System Involvement in Lyme Carditis. HeartRhythm Case Reports. 2020; 7(2): 112-116
5. Wang C, Baranchuk A. Long-term evolution of patients treated for early disseminated Lyme carditis. Third prize at the ICE 2021 (International Congress on Electrocardiology)
6. Besant G, Wan D, Yeung C, Blakely C, Branscombe P, Suarez-Fuster L, Redfearn D, Simpson C, Abdollah H, Glover B, Baranchuk A. Suspicious Index in Lyme Carditis (SILC): Systematic Review and Proposed New Risk Score. Clin Cardiol 2018; 41(12):1611-1616

 

 

 

 

May Awareness LDA Guest Blogger

Adrian_Baranchuk_Photo_2020

Adrian Baranchuk MD, FACC, FRCPC, FCCS, FSIAC is Professor of Medicine at Queen’s University, Kingston, Ontario, Canada. He is Editor-in-chief, Journal of Electrocardiology;
Vice President, International Society of Holter and Non-Invasive Electrocardiology (ISHNE);
Secretary, Interamerican Society of Cardiology (SIAC); Co-Director, ECG University; Past President, International Society of Electrocardiology (ISE); and Director, NET-Heart Project (Neglected Tropical Diseases and other Infectious Diseases affecting the Heart).

Lyme Carditis: Update 2021. An Evasive Diagnosis in the Time of COVID-19

Adrian Baranchuk MD FACC FRCPC FCCS FSIAC, Chang (Nancy) Wang MSc (c), MD
Department of Medicine, Kingston Health Science Center, Kingston, Ontario, Canada

Lyme disease (LD) is a tick-borne bacterial infection caused by Borrelia burgdorferi. Lyme carditis (LC) is an early-disseminated manifestation of LD, most commonly manifesting as a complete “shut-down” of the electrical system (high-degree atrioventricular block (AVB)) that can evolve rapidly over minutes, hours, or days producing severe symptoms like fainting, palpitations, shortness of breath, extreme dizziness, or sudden death (1-2).

Other cardiovascular manifestations include alterations of the “motor” of the heart (sinus node disease) (3), a disorganization of the cardiac rhythm that increases the risk of stroke (atrial fibrillation) (2), lesion in the distal cables of the heart (bundle branch blocks) (4), and different degrees of inflammation of the layers of the cardiac walls (myocarditis, pericarditis, and endocarditis) (2). Some of these manifestations could be so severe that a total dysfunction of the cardiac function occurs in a matter of hours, and the patient may die even if admitted to the best ICU in the world.

The initial symptoms of LD can be mistaken by other common infections or allergic reactions. Delayed diagnosis is one of the most important risk factors to serious LD presentations including LC in all its forms. The good news is that prompt diagnosis and appropriate antibiotic therapy links to a much better prognosis. In addition, we now know that when appropriately treated with antibiotics according to guidelines (2); there is no evidence of residual disease in the heart (5).

Most conduction abnormalities caused by LC resolve with appropriate antibiotic therapy (2).

The current COVID-19 pandemic is posing a new challenge in the diagnosis of LD. There are lots of overlapping symptoms such as: fever, malaise, generalized pain, lack of energy, etc. During these times, one would advise on ruling out COVID-19 first before embarking on any other test. However, what could we recommend in terms of confirming or ruling out LD, specifically during these challenging times?

Learning how to recognize the many presentations of LD from a clinical point of view has been published several times. It is especially important to ask about outdoor activities, history of tick bites, tick removal and dermatological rashes (remember that the classic “bull eye” is only present in about 40% of cases). Extensive dermatologic examination may be necessary. Residence in an endemic region for LD is essential for risk stratification, as these recommendations should be encouraged in all ED and family doctor offices in areas of high prevalence.

Once the diagnosis is suspected, specific interrogation should be directed to cardiovascular symptoms such as: dizziness, palpitations, fainting or near fainting, chest pain and shortness of breath. If the patient recognizes any of these symptoms, along with any other factors suggesting LD, a 12-lead ECG (the simple and unexpensive electrocardiogram) should be performed (2). Any evidence of electrical disturbance should prompt admission in hospital for a course of IV antibiotics while waiting the results of serological tests.

On the other hand, in patients presenting with unexpected high-degree AV block, clinical suspicion for LC can be assessed using the validated risk score called SILC (Suspicious Index in Lyme carditis) (6) where the acronym COSTAR (Constitutional symptoms, Outdoor activities/endemic region, Sex male, Tick bite, Age > 50, Rash) may help in determining the risk of presenting early disseminated LC.

In summary, use your clinical tools to suspect LD in the context of COVID-19 pandemic, order serological tests when appropriate, and remember to check for cardiovascular complications with a history, physical, and ECG. If evidence of LC, admit the patient to hospital with continuous cardiac monitoring and appropriate IV antibiotics. Decision for permanent pacemaker implantation should wait until completion of antibiotics as heart block in LC is often reversible. Most patients maintain normal rhythm on long-term follow-up. Avoiding unnecessary implants is crucial as most of these patients are young and active individuals.

References
1. Wan D, Blakely C, Branscombe P, Suarez-Fuster L, Glover B, Baranchuk A. Lyme Carditis and High-degree Atrioventricular Block. Am J Cardiol 2018; 26(5): 233-239
2. Yeung C, Baranchuk A. Diagnosis and Treatment of Lyme Carditis. J Am Coll Cardiol 2019; 73(6): 717-726
3. Gazendam N, Yeung C, Baranchuk A. Lyme carditis presenting as sick sinus syndrome. J Electrocardiol 2020; 59: 65-67
4. Maxwell N, Dryer M, Baranchuk A, Vinocur M. Phase 4 Block of the Right Bundle Branch Suggesting His-Purkinje System Involvement in Lyme Carditis. HeartRhythm Case Reports. 2020; 7(2): 112-116
5. Wang C, Baranchuk A. Long-term evolution of patients treated for early disseminated Lyme carditis. Third prize at the ICE 2021 (International Congress on Electrocardiology)
6. Besant G, Wan D, Yeung C, Blakely C, Branscombe P, Suarez-Fuster L, Redfearn D, Simpson C, Abdollah H, Glover B, Baranchuk A. Suspicious Index in Lyme Carditis (SILC): Systematic Review and Proposed New Risk Score. Clin Cardiol 2018; 41(12):1611-1616




Joseph Burrascano MD, Guest Blog – Lyme Testing

May Awareness LDA Guest Blogger

Joe_Burrascano 2019Joseph J. Burrascano Jr. MD is a physician who was an early innovator in the field of tick-borne diseases, having begun his clinical research in the mid-1980s in cooperation with several other key pioneers. In addition, he is well known for his educational presentations and for his monographs on diagnostic and treatment guidelines for Lyme and related tick-borne illnesses- a classic series that has been freely circulated around the world since 1989.

With over three decades of clinical experience and research in this field, he has appeared in and on virtually every form of media, has advised the CDC and NIH, testified before the U.S. Senate, an armed services joint subcommittee, and at various governor’s councils. A founding Board Member of ILADS, he also served as a Director of the ILADS Educational Foundation.

A graduate of the NYU School of Medicine with a specialty in Internal Medicine, Dr. Burrascano left clinical practice in 2006 to enter the biotech space. However, he continues to be active in educating practitioners and the public on issues related to tick-borne diseases. He is an active writer and ghost writer and has authored or edited articles (both lay and peer-reviewed), book chapters, whole textbooks, web page content, public relations releases, book reviews and more. In addition, he serves on the editorial review board for several medical journals.

He currently works full time as a project analyst and manager for a private biotech company, helping to bring advanced technologies and treatments out of the lab and into general use. In addition, he is a clinical advisor for a specialty diagnostic lab, and his lifelong interest in nutrition has resulted in his ongoing consultative work with various nutritional supplement suppliers.

Quiet Revolution in Testing for Tick-Borne Diseases

I was thinking about how it was, over 35 years ago, when I first became aware of Lyme disease and began managing patients with this. One of the biggest problems then was confirming the diagnosis. My Lyme-aware colleagues and I were familiar with the clinical presentation but too many times the Lyme tests, primitive as they were, were non-reactive. Thus “sero-negative Lyme.”

We learned over time that ticks were transmitting pathogens other than B. burgdorferi– first was Babesia, then a Bartonella-like organism came into play. When these were the primary cause of the illness, Lyme tests were negative and Lyme treatments did not help the patients. This explained a lot. If someone had Babesia they would not be expected to have a positive Lyme test. As time passed, more potentially co-infecting bacteria, protozoans and others were found. Perhaps all this seronegativity was appropriate after all.

Fast forward to today- thanks to a quiet revolution in testing that has uncovered previously unknown and/or unexpected tick-borne diseases, many more patients are able to get laboratory confirmation of their clinical diagnoses. Not only is it comforting to practitioner and patient alike to have a supportive lab test, it is also more important than ever to assure insurance coverage for treatments, and for practitioners who may be under constant scrutiny by their medical boards.

With Lyme, using advanced testing methods, it has been shown that many patients who were seronegative on standard testing were found to have infection with species of Lyme Borrelia other than burgdorferi. They actually were infected with members of the Bb sl complex previously thought to not be in America! These species were unlikely to be detected by tests based upon the lab strain of B. burgdorferi, B31. Here, seronegativity was not because of poor test quality, but because of testing for the wrong species.

An even more surprising finding is that many seronegative Lyme patients did not have Lyme Borrelia– they had tick-borne relapsing fever Borrelia! How is this possible? How could relapsing fever be confused with Lyme? After all, the textbooks describe TBRF as having an acute onset with high fever and severe chills and malaise, followed by a drenching sweat and then relative normalcy until a relapse of similar symptoms occurs five or so days later, that then repeats. Clearly a distinctive presentation, but the problem is that in many patients, TBRF presents as “seronegative Lyme” and not as classic relapsing fever. Apparently the TBRF spirochetes did not read the textbook! It seems this “classic” presentation of TBRF occurs relatively rarely, similarly to the rarity of Bell’s Palsy in “classic Lyme”. So again, seronegativity was due to testing for the wrong species.

Bartonella is notoriously difficult to document with blood testing, and now with the possibility that greater than thirty species could be pathogenic to humans, better testing is really important. The key here is the ability to test for these multiple species. Nowadays we have multispecies western blots (soon to be replaced with immunoblots), multispecies PCRs and FISH tests.

Droplet digital technologies seem to be another advance. Finally- these “stealth” infections are no longer so stealth.

And what about Babesia? Same issue? Yup. Research has shown that several species of Babesia can and do infect humans, and the genus-level testing now available can uncover infections that previously went undetected.

This testing revolution has even extended to COVID-19, with immunoblots available that are not only more sensitive and specific than standard serologies, they can identify whether the immune reactivity is to a natural infection or due to vaccination. While this serological approach is a great advance, it only demonstrates B-cell response to the infection. Thankfully, we now have T-cell response testing and combining the two will give a much needed, more complete picture of a patient’s status.

Looking forward, the revolution will continue with the expanded application of immunoblot technology to additional pathogens. Tests that detect the pathogen’s RNA, which is only present in an active, ongoing infection, are expanding. Currently the FISH test does this, and other RNA-based detection methods are being developed. Along the same lines, looking for the presence of bacteriophages may prove to be a useful way to detect disease activity.

It is very exciting to see that skin biopsies are coming of age thanks to recent advances. The full spectrum of nerve damage seen in tick-borne illnesses will soon be able to be documented- not only damage to small cutaneous fibers and the pre-ganglionic innervation of sweat glands, but even demyelination can be seen! These direct tests that show what we have been postulating but could not prove represent a major advance. And these same biopsies hold the promise to be a highly efficient way to conclusively show infection with Bartonella species.

For decades we had to struggle with little more than clinical diagnoses- we knew our patients were ill but we could not prove it and care oftentimes could not be given. Finally, testing science is catching up with us. It’s about time!

 

 

 

 

 

 

 

 




Look For: May Guest Blogs for May Lyme Awareness

Each May, the LDA asks experts in the area of Lyme & tick-borne diseases to write a blog to educate the public in an opinion piece on a specific topic or one they choose. One blog is published each week. For Lyme/TBD awareness 2021, LDA will present the following: 
 
Joseph Burrascano, MD  Lyme Testing
Adrian Baranchuk, MD  Lyme Carditis 2021 Update
Kenneth Liegner, MD  Lyme & TBD Where we are 2021
Sue Faber, RN, BScN  Lyme & Pregnancy
James Occi, PhD (Cand.)  Ticks
 
The opinions expressed by the authors are their own opinions. Check LDA Guest Blogs page on our website each week in May to see the new blog or to read past blogs by other guest experts. Go to the President’s Blog page to read posts by the LDA president.



Horowitz Blog Honoring Congressman Smith’s Efforts to Save a CLD Pt. with COVID

Richard Horowitz, MD, PLLC –  LDA Guest Blogger.

Dr. Richard Horrowitz co-author of the published case study on Lyme disease and COVID-19Dr. Richard I. Horowitz, MD, PLLC, is a board-certified internist and medical director of the Hudson Valley Healing Arts Center, where he has treated over 13,000 Lyme and tick-borne disease patients during the past 30 years. He is the author of two best-selling books, Why Can’t I Get Better? & How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease. Dr Horowitz was also a member of the HHS Tick-borne Disease Working Group and Co-chair of the “Other Tick-borne Diseases and Co-infections” subcommittee which provided recommendations to Congress to improve the care of those suffering with tick-borne disorders.

Dr. Richard Horrowitz co-author of the published case study on Lyme disease and COVID-19
Congressman Chris Smith

The Lyme Disease Association thanks Congressman Chris Smith,
US House Lyme Disease Caucus Co-Chair, & Richard Horowitz, MD, for their valiant efforts to help a chronic Lyme patient
hospitalized with COVID-19.

The following Blog, posted on his Facebook, is reprinted with permission from Dr. Richard Horowitz. The LDA applauds these two courageous individuals trying to buck the system to save a life.

Dr. Richard Horowitz
November 2 at 7:43 AM ·

I feel inspired to write a blog this am, which I would like to entitle “What it truly means to be a public servant.” It is in honor of Congressman Chris Smith from NJ. Please read the story below, and see if you agree that his action, going far above and beyond the call of duty, is why Congressman Smith is now currently serving his 20th term in Congress.

Congressman Smith contacted me several nights ago asking for my assistance. A chronic Lyme disease patient was extremely ill in a NJ hospital on a ventilator with COVID-19, and was on dialysis after failing traditional therapies. He called me late on Thursday evening, as he had known about my success with glutathione and ivermectin, thanks to Pat Smith, head of the LDA. He asked if I could contact the hospital and discuss with the ICU team the therapeutics that had helped my patients, as well as speak to the patient’s wife. I promptly sent over 10 email attachments to Congressman Smith highlighting the role of glutathione and ivermectin in COVID-19, as well as links to the two articles that I published in the peer-reviewed medical literature (R.I. Horowitz, P.R. Freeman, Three Novel Prevention, Diagnostic and Treatment Options for COVID-19 Urgently Necessitating Controlled Randomized Trials, Medical Hypotheses (2020)
Horowitz, R.I., Freeman P, Bruzzese, J. Efficacy of glutathione therapy in relieving dyspnea associated with COVID-19 pneu-monia: A report of 2 cases. Respiratory Medicine Case Reports, April 21, 2020. Article Number: 101063)

Fast forward to Sunday. I had not heard anything from the hospital and was getting ready to call the patients wife, as I was curious how he responded to the IV glutathione. Just as I was about to pick up the phone, I suddenly I got a call from Congressman Smith again. He let me know that the patient was deteriorating and that the hospital had not administered the IV glutathione. Why? It was not on formulary and was not a drug. Congressman Smith asked me if I could please call the hospital again and speak to the head of the pharmacy to sort things out. I did so and spoke to a woman we will call ‘Adele’. Adele let me know that she agreed to try it, since the patient had failed all traditional therapies. I gave her the name of the compounding pharmacy that I used and drove over to my office to see if I had some unused bottles of IV glutathione. Fortunately, I did. They were in the original box with the lot numbers, to ensure purity, and I called Adele back up, asking if a courier could come to my home and pick them up since the patient was rapidly deteriorating. She said she wasn’t sure a courier could come from NJ to NY to do so, at which point I offered to drive from my home across the border into NJ onto the first stop of the Garden State Parkway. A patient’s life was at stake. She said she would get back to me and let me know if that was a possibility.

Two hours later I got a call from Congressman Smith at 7 pm on Sunday night. He let me know that he and his chief of staff were going to drive 3 1/2 hours to my home to pick up the glutathione and the nutraceuticals that I had procured from my office. It was heavily raining outside, and would be a 7-hour trip back and forth. I asked him, was he sure, and that perhaps my meeting him halfway could help. He said no. He was already on his way.

While in the car driving to my home, Congressman Smith got on a three-way call, to contact Adele again, and be sure that the patient would be able to receive the IV glutathione stat Sunday night. It would otherwise be 48 hours to get an emergency FedEx shipment from a compounding pharmacy. She let us know that she spoke to the hospital administrators and legal team, who were not comfortable with using the glutathione from the compounding pharmacy that I used. They were not familiar with them (even though you could google the name of the pharmacy online, with their license number and history). Congressman Smith, the patient’s wife and I got on the three way call and begged them to please consider it, as the patient had failed all traditional therapies, and was rapidly deteriorating. I explained to Adele that glutathione was a natural substance made by the body and the liver, and that I had a 30-year experience using it for Herxheimer reactions in Lyme disease patients. I had always found it to safe and well tolerated unless someone had chemical sensitivity and a severe sulfa allergy. After listening to our arguments, Adele said she would re-contact the administration and legal team and get back to us.

Two hours later, we received notice from the wife that the patient had died. Congressman Chris called me with the news and turned around after having driven over 2 hours on a cold, wet, rainy night. He thanked me, and I said to him: “Chris, please don’t thank me. Thank you. I know very few public servants who would ever go out of the way you did for your constituents in their district. What you did is the true meaning of the highest form of public service. God bless you.”

Congressman Smith let me know that he was going to be on a call with Alex Azar, head of HHS today. I asked if there was any way to get a randomized, controlled trial done for glutathione and ivermectin, as cases were spiking in the US, with death rates continuing to rise. He said he would speak to him about it and get me on a call. As I got off the phone and turned to my wife, and explained what had just happened, I was struck by what it means to truly be a public servant and deeply care about your constituents. Very few individuals would hear the call of duty and rise to such heights. Congressman Smith is such a man. When you consider all that he has done for the Lyme community during the past 3 decades, it is no wonder that he has been in Congress since 1981.

It is ultimately not billions of dollars in money and advertising that gets you that type of loyal support that has followed him for decades in Congress. It is because Congressman Smith has the heart and soul of a man who cares and goes the extra mile to ensure that he is always doing his best, getting the best for his constituents. If everyone in Congress followed his lead, America would truly be great again.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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President's Blog
Slam Dunk for WNBA−Slam for Delle Donne & Lyme Patients

2014 NBA Elena
In partnership with the Lyme Disease Association, at the 2014 LymeAid 4 Kids night: All-Star and Delaware 87ers goodwill ambassador, Elena Delle Donne

From LDA President Pat Smith’s Blog:

What has happened to one of the best Women’s National Basketball Association (WNBA) players is no surprise to the Lyme Disease Association or hundreds of thousands of chronic Lyme patients. Elena Delle Donne, of the Mystics, has been denied by the WNBA league’s panel of physicians as having a health exemption due to being at high risk for COVID 19, thus unable to be paid for exemption status if she does not play the upcoming season. She had a letter from her personal physician who confirmed her high risk status as she has suffered from Lyme for many years, and the team doctor deferred to that physician’s appraisal.

Apparently, the league’s physician panel decision was based on the CDC’s list of people of any age with certain underlying medical conditions are at increased risk for severe illness from COVID-19. The CDC medical conditions list does not include Lyme. The omission is not surprising when you consider that our government has denied treatment to 20%+ of Lyme patients because it does not acknowledge their condition. This position of the government on chronic Lyme has persisted for decades–Lyme disease as we know it has been around 46 years.

Chronic Lyme can lead in many cases to complete debilitation and even death, so why wouldn’t the government classify someone with chronic Lyme as high risk? A high risk admission would provide validity to the claims backed by hundreds of peer reviewed articles published on research in credible institutions that indicate chronic, persistent, Lyme might be real.

The recent discovery of “persisters” and biofilms associated with Lyme disease threaten the house of cards built by the deniers. The patients they have denigrated, mocked, and dismissed over decades might really be sick?  These chronic patients might actually need more antibiotics than the ~3 weeks now provided under the IDSA guidelines—guidelines clandestinely, or not so, supported by federal health officials? Guidelines that these officials have tried to remove references to on their websites by removing the name and keeping the contents? As the saying goes, “If it looks like a duck, swims like a duck, and quacks like a duck, then it probably is a duck.”  From what I hear, the Lyme community votes for the duck.  The government continues to endorse IDSA guidelines for diagnosis and treatment.

The government will not however, reference the International Lyme & Associated Diseases Society (ILADS) Lyme Treatment Guidelines, those used by Lyme literate physicians, who use clinical judgment to treat longer-term for Lyme disease if they feel it is necessary. 

In fact, a recent NIH FOIA came to my attention which documents  a discussion in 2008 between a then NIH official and an HHS employee as to possible removal of the ILADS guidelines from the government’s then active National Guidelines Clearing House under HHS’s Agency for Healthcare Research and Quality (AHRQ).  

The chronic Lyme deniers carefully choose their handpicked biased science often published in their own journals and loudly tout the over generalized Lyme treatment trial conclusions–all are sacrosanct. Their message is clear: No more research is necessary, and no one should question that, especially patients, advocates, and Lyme literate physicians.

Meanwhile, patients cannot get a timely diagnosis, an appropriate treatment, and as Delle Donne found out, a high risk designation.  All this denial, yet CDC estimates from studies that there are 300,000+ Lyme disease cases annually in the US alone, and government admits some 15-20% continue to have symptoms. But is it Chronic Lyme? NO. Persistent Lyme? NO. What is it then we ask, 46 years later. Listen to the sounds… of silence.  

NOTE:  Although LDA President Pat Smith is an HHS TBD Working Group Member, this Blog does not express the opinions of HHS or the HHS Tick-Borne Disease Working Group.

For more information:

Deadspin Article: ‘She’s Being Discriminated Against’: League Says Two-Time MVP’s Health Issues Not Serious Enough For Opt-Out 

LDA Post 2015: Delaware 87ers, LymeAid 4 Kids Partner For Second Season
– Sevens, Delle Donne and University of Delaware College of Health Sciences to host LymeAid 4 Kids night

LDA Post 2014: WNBA Rookie of the Year Partners with LDA’s LymeAid 4 Kids: on CBS TV Sports Network