Newtown, CT – Rotary Lyme Disease Forum

Newtown, CT – Rotary Lyme Disease Forum

Newtown, CT – Rotary Lyme Disease Forum

LDA Background: (LDA 2)
• LDA is an all-volunteer national nonprofit (501c3), nationwide affiliates/chapters
• Mission: education, prevention, research and patient support.
• LDA has supported research projects coast to coast including in NJ; many published in peer review including JAMA, Infection, Neurology, and The Proceedings of the National Academy of Science.
• LDA with its CT affiliate is partnering with Columbia University to open an endowed chronic Lyme disease research center, the first of its kind in the world, $200,000 remains
• LDA has LymeAid 4 Kids fund for children without insurance, supported by internationally acclaimed author Amy Tan.


(Title slide 3)
(TBDs 4) Today we can’t just talk about Lyme disease. Other tick-borne diseases (TBDs) are spreading rapidly across this country and the world. Many diseases can be acquired by the bite of the same tick and can cloud the diagnostic picture, complicate treatment, and drive up costs. Co¬infections including Ehrlichiosis, anaplasmosis, babesiosis, STARI, and Rocky Mountain spotted fever have been transmitted to people through tick bites, and studies have indicated Bartonelliosis may be a tick-borne disease, although the transmission of Bartonella through tick-bite is still controversial.
(Mouse 5) One of the significant players in this disease is the white-footed mouse which harbors Lyme and other infections and is then bitten by the nymph stage of the tick. The tick then becomes infected with Lyme disease or some other bacteria. The chipmunk is also an important reservoir for the disease.
(Deer ear 6) The deer is a wonderful transport system for the tick. The adult tick will often bite the deer before mating and laying eggs.

(Tick Warning 7) Something that should be posted in all parks and recreation areas where ticks are prevalent in my opinion.
(Ixodes scapularis (deer tick) 8 Here is a female adult (to your left), male, and nymph deer ticks. Nymphs produce the most disease probably because they are poppy-seed size (see seeds on slide) and hard to see. Adults actually have a higher infection rate. Encephalitis, Lyme, babesia are all diseases transmitted by the deer tick. Bartonella, tularemia, tick paralysis are diseases that may be diseases transmitted by these ticks, the jury is out yet.
(deer tick)& straight pin 9 Size comparison
(deer tick) almost mating 10
Amblyomma (lone star) 11 STARI (southern tick-associated rash illness) is a disease transmitted by the bite of the Amblyomma americanum, or lonestar tick. Its existence has been debated for fifteen or more years, with the CDC long denying its presence and/or significance, and Dr. Ed Masters in Missouri leading the scientific battle to show it is a distinct entity of clinical significance, leading to some labeling it Master’s Disease. STARI, with its Lyme-like symptoms and indistinguishable EM rash has become a rallying point for those treating TBDs and embodies, in microcosm, the 30 year Lyme disease war. Its existence, prevalence, severity, treatment and range have/are being questioned. The Lone star tick, which is extremely aggressive, once roamed only as far north as central New Jersey, where I live. Now studies have placed this tick and the Borrelia lonestari bacterium it carries in New York and Massachusetts.i And the same study documented B. lonestari bacterium in Ixodes scapularis (deer tick).

Other diseases carried by the lone star are tularemia and HME (human monocytic Ehrlichiosis). Tick paralysis and RMSF may possibly be transmitted from this tick but the jury is still out on that issue.
Pencil (lone star & deer)12 Size
Block (deer & lone star)13 Size
Dermacentor (American Dog)14 With one bite of the American dog tick, often BTW, dismissed by the physician with a “don’t worry, that’s not a deer tick, “wave, you may contract RMSF, tularemia and perhaps Ehrlichiosis, that last not clearly established yet.
American Dog on grass15
American Dog & deer on paperclip16 size
Deer, lonestar, dog 17 size
Western black-legged tick 18 In case you thought you would move to California to be safe, you should know that the western black-legged tick, closely related to the deer tick here, transmits Lyme disease, babesia, anaplasma phagacytophilum (HGA), and may transmit bartonella, still an unsettled question with the latter.

(Risk 19) According to the CDC, people who live or work in residential areas surrounded by tick-infested woods or overgrown brush are at risk of getting Lyme disease. People who work or play in their yard, participate in recreational activities away from home such as hiking, camping, fishing and hunting, or engage in outdoor occupations are at risk for Lyme disease. That does not exclude many people!

(Prevalence 20) Lyme is the most prevalent vector-borne disease in the US today, reported in 49 states and DC. It is also found worldwide in over 80 countries. In 2004, the Centers for Disease Control & Prevention (CDC) reported 19,804 cases of Lyme disease. According to the CDCii, only 10 percent of cases meeting its criteria for Lyme disease are reported. Therefore, 198,040 new cases meeting the criteria occurred nationwide in 2004,iii with countless numbers of other cases that do not meet the criteria occurring.
(Final Reported Numbers 21) Look at the chart with states listed in order of occurrence of reported cases for 2004. Connecticut ranked 5th in 2004 in reported cases at 1348 cases, thus 13,480 cases of Lyme occurred in CT in 2004 that met the CDC criteria. Additionally, a totally unknown number of cases that do NOT meet the CDC criteria also occurred. For 2005, the official numbers are generally released in August, but yesterday the press reported 1810 cases for CT, which they claim is a 26% increase in case numbers. Additionally, CT usually has one of the highest per capita number of cases in the country (53.1/100,000).

According to a just released news article, referencing the CDC, Lyme reports a dramatic rise in the last decade from 11,700 cases in 1995 to 21,304 last year.iv That’s over 210,304 cases last year that met the CDC surveillance criteria.
(Maps 22) These maps show the spread of Lyme disease since 1985.
(Surveillance Definition 23 ) Reported cases meet the surveillance criteria if the patient has a physician-diagnosed EM (bull’s-eye) rash, or positive blood work and other system involvement.
(CDC Problems w. criteria 24) Studies have shown that the EM rash appears less than 50% of the time, and that testing, especially the initial required screening test, the ELISA, is highly inaccurate. A recent Johns Hopkins study shows that blood tests commonly used to diagnose Lyme missed 75% of cases.v This is particularly alarming in light of studies which show the Lyme bacterium, Borrelia burgdorferi, has the ability to enter the brain in less than a day’s time after a tick (CDC Statement 25)The CDC states that doctors should not use surveillance criteria for diagnosing Lyme but should make a clinical diagnosis, nor should they be use them to set the standard of care. Insurance companies should not use them to establish reimbursement criteria.

Misusing CDC Criteria 26 Yet many physicians continue to improperly use the surveillance criteria to diagnose, missing many patients. Doctors are faced with a dilemma: do they treat sick patients who do not meet the CDC surveillance criteria and patients with chronic symptoms? Of those doctors who chose to treat, many treat according to the International Lyme & Associated Diseases Society (ILADS) guidelines that address the management of chronic Lyme diseasevii , since the Infectious Disease Society (IDSA) guidelines only address short-term treatment. Unfortunately, many entities including insurance companies and many physicians do not recognize that there are now two standards of care for Lyme disease, although the ILADS guidelines are on the National Guidelines Clearing house website maintained by HHS.
(Crime against Lyme Cycle 27) Physicians, who understand that patients who receive a delayed diagnosis and improper treatment often develop chronic disease, place themselves at great risk. They often diagnose and treat outside the CDC guidelines, which I again add, the CDC says is OK to do. Besides being investigated by state medical boards for long-term treatment, these doctors are pressured by insurance companies who often deny reimbursement to anyone not meeting CDC surveillance criteria, despite CDC’s warning that the guidelines are not meant to be used for reimbursement criteria. Doctors indicate that insurance carriers strongly suggest they stop treating Lyme patients long-term or leave the plan. While a few continue to treat, some refer their patients to other long-term treating physicians, while others, fearing reprisals or facing economic hardship, stop seeing Lyme patients.

Standard of Care 28 (Thanks to Lorraine Johnson, JD, CALDA Ex. Dir. and an LDA Professional advisor for much of this material.) Legally speaking the standard of care is what is done by a consensus of physicians. Now however, that is not necessarily happening. There is a heavy reliance on guidelines, a push to centralize medical care and take the decision making away from doctors.
Problems Leading to 2 Standard of Care 29 There is a lack of sensitive & reliable markers for Lyme disease so it is hard to determine who has disease. Ideal antibiotics, ideal route of administration, and duration are really not settled. Treatment failures are reported with all current regimens.
2 Standard of Care Exist 30 Opinion divided in medical community. Both viewpoints are in peer reviewed guidelines: the International Lyme & Associated Diseases Society (ILADS) guidelines that address the management of chronic Lyme disease and the Infectious Disease Society (IDSA) guidelines only addressing short-term treatment. Both were on the National Guidelines Clearing House of the federal government. IDSA guidelines were removed a few months ago, presumably because they are stale.

Who Decides Which Standard to use 31 The selection between legitimate treatment approaches belongs to the patient under the medical ethics doctrine of autonomy and of informed consent (usually required for invasive and experimental treatment). It does not belong to the doctor, to the insurer or to the medical board. (American College of Medical Quality). Lyme disease treatment is not really experimental, it is up one notch, it is an emerging standard of care.
Patient Preference 32 Public health researchers recommend more research and shared decision making with patients. (JE Wennberg, Dartmouth) Patient Autonomy 33 Respect for patient autonomy is a principal of medical ethics. Patients do need to be informed of all options outcomes and the risks and benefits of all treatment options. Unfortunately, especially with HMO doctors, treatment is denied patients because the treatment protocols often used by HMOs are designed to keep down costs. Patients need to find independent doctors, and then generally insurance will not pay for treatment.

(Development of Chronic Disease 34) This uncertain climate existing around Lyme disease diagnosis and treatment leads to few treating physicians, delayed diagnosis, delayed/improper treatment, and often leads to chronic disease─developed by an estimated 35% or more of patients─viii which can last a lifetime.
Unfortunately, children are in the highest risk category for contracting tick-borne diseases. The effects on students can be staggering, ranging from reported median school absences of 140 days from a CDC study of New Jersey students with Lyme disease,ix to a Columbia University Medical Center study reporting a 22-point drop in IQ in students with Lyme disease, which was reversed with treatment.x
The long-term cost of Lyme disease to families, school systems, the health care system and the economy is astounding. According to Contingencies, an actuarial trade publication, the cost to society for Lyme disease is about one billion dollars per year. That was a 1993 study, when only half the numbers reported today were reported, thus that would bring costs to $2 billion annually with today’s case numbers.
(Borrelia Wins 35) What happens in these cases of treatment denial? Borrelia wins. Bb entering a B cell and destroying the cell, which was supposed to destroy the Borrelia. Thanks to David Dorward, NIH Rocky Mountain Labs for this great photograph.

Ironically, although often erroneously denied health insurance reimbursement for chronic Lyme disease, patients diagnosed with chronic Lyme disease often cannot buy life insurance policies, nor can they donate blood. Red Cross blood donor guidelines distinguish between Lyme disease and chronic Lyme disease, “Accept persons with Lyme disease if they were treated, the disease resolved and at least one year has passed. Those with chronic Lyme disease are not eligible to donate blood.” The American Society of Clinical Pathologists (ASCP) blood donor guidelines state under “serious illness,” “defer indefinitely…Lyme disease.” The bacteria that cause Lyme have been shown to survive blood banking conditions, although to date, no cases of Lyme disease transmission have been reported to occur through blood donations.

(Patient Initiated Remedies 36) Despite being 30 years into the disease, little has been done by government to unravel its mysteries or help those already infected. There is not even a gold standard test. Recently, states have begun to take legislative and/or policy actions, thanks mostly to advocacy groups across the country, including the LDA and its chapters and affiliates. RI has mandatory insurance coverage and doctor protection; CT has a bill which provides some coverage but has serious flaws; California and NY have treating physician protection based on existing protections for doctors using non-conventional treatments; NJ added Lyme-literate doctors to its State Board of Medical Examiners Review Board, and NJ has mandatory teacher in-services for educators who have students with Lyme disease, and a state adopted Lyme curriculum; Advisory councils are formed in a half dozen states. Pennsylvania has a bill for physician protection and insurance which passed the assembly, NJ and FL have mandatory insurance bills introduced; Massachusetts and Maryland have had legislative introductions at various times and several other states have groups which are looking at advocating possible legislation.

(Federal Government Actions 37) What are they doing? (Pie Graph 38) US Army CHPPM (Centers for Health Promotion & Preventive Medicine) is testing ticks from military bases for Lyme and other tick-borne diseases such as RMSF, Ehrlichiosis, Anaplasmosis, Babesiosis, and STARI. The information on tick populations can be beamed to GIS satellites then to hand held devices in the field which can advise the troops where the population and infectivity rates of ticks are high, so they may maneuver troops around high risk areas. CHPPM has recently used the GIS tick data on its Virginia Ft. A.P. Hill installation which hosts the Boy Scout jamboree to determine where ticks were located so they could map and spray those areas for ticks before the Scouts arrived. CHPPM also has developed a laptop-sized device which can be taken in the field and ticks which bite troops can be tested. If a tick which has bitten a soldier tests positive, he/she can receive immediate treatment.

(Federal Companion Bills 39) In order to expand the research base, to better educate physicians and to allow treating physicians and patients to have input into Lyme disease policies at the federal level, companion bills have been introduced into the U.S. House (HR 3427, Smith/Kelly) and U.S. Senate (S 1479, Dodd/Santorum). They provide $100M over 5 years for Lyme disease research and education to be utilized for well delineated goals. They create a patient/ physician/researcher task force with input to Health & Human Services (HHS). LDA has been working with legislators since 1996 to have sound legislation introduced and it now has a letter from over 100 groups and notables expressing support for the bills.
(WNV vs Lyme 40) Obviously the military thinks Lyme disease is serious. We need to convince other branches of the government that is, indeed, the case, because only funding can change this picture. Currently, although Lyme disease is almost eight times more commonly reported than West Nile Virus (WNV) in the U.S., a significantly higher percentage of funding is being set aside to prevent and treat WNV:

The companion bills HR-3427/S-1479 introduced into the US House and US Senate in DC can provide necessary funding for Lyme disease and its many co-infections. Go to for details.
LDA briefed HHS in DC on doctor-patient issues in 2003 and expects to meet with them soon for further discussion.
(Supporters 41) Right now, the LDA has been successful in getting over 100 groups across the country to support the federal bills. There are now 47 co sponsors in the House. In CT, Representatives Nancy Johnson and Christopher Shays have signed onto the bill. In the senate, Senator Dodd has introduced the bill, he is the only Connecticut senator onto the bill.

(Global Warming 42) ABC News Report
(Thank You 43) Remember, risky behavior for Lyme disease can be jogging, golfing, walking the dog, or even playing on the swing set. Thank you for attending today to learn more about TBDs and the options you may have for helping unravel the mysteries of Lyme.

i Taft, SC et al, Vector Borne Zoonotic Dis., 2005 Winter; 5(4):383-9 ii Dr. Paul Meade, CDC epidemiologist, Lyme: Battles with Illness, Emotions, Insurers, Jessica Adler, (NJ) Herald News 5-4-04 iii MMWR, CDC, 1-6-06 for weeks ending 12-25-05 iv Richmond Times Dispatch April 20, 2006 v P. Coulter et al, J. Clin Microbiol.. 2005Oct.; 43(10): 5080-4 Two Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease vi Steere, Allen, Mandell, Douglas and Bennett’s Principals and Practices of Infectious Diseases, 4th ed. 1995. vii ILADS working group Expert Review Anti-Infective Therapy 2(1), Suppl. 2004 viii ix CDC Survey of School Districts in NJ, reported at US Congressman Christopher Smith’s (NJ-4) Lyme Disease Forum, Wall Township, 1992. x B Fallon, et al, Underdiagnosis of Neuropsychiatric Lyme Disease in Children and Adults, Psychiatric Clinics of North America Vol. 21 (3), Sept 98.