Persistent Lyme Disease Controversy Continues

As we enter yet another year of increasing cases of Lyme disease reported, we look back over the past several years and the history of Lyme as well as the controversy that remains.

In 1976, the United States first recognized the disease after an outbreak of juvenile arthritis in and around Lyme Connecticut. While many incorrectly use a plural form of the word, it is “Lyme” disease, named after Lyme Connecticut.  

In 2014, Act 83 was established with the intent of the General Assembly:
(1)  To provide the public with information and education to create greater public awareness of the dangers of and measures available to prevent, diagnose and treat Lyme disease and related maladies.
(2)  To ensure that:
(i)  Health care professionals, insurers, patients and governmental agencies are educated about the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses.
(ii)  Health care professionals provide patients with information about the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses to enable patients to make an informed choice as part of informed consent and to respect the autonomy of that choice.
(iii)  Government agencies in this Commonwealth provide information regarding the broad spectrum of scientific and treatment options regarding all stages of Lyme disease and related tick-borne illnesses.
(iv) A system is established for tick surveillance.
This act also provided a “Definition” of various stages of Lyme disease, which is still not being used as well as mandating the development of a state task force. The entire act can be found at https://www.legis.state.pa.us.
September 24, 2014, was the first Pennsylvania Task Force meeting. The report was issued three years later and can be found at https://www.pasenategop.com/blog/102417/.
In 2015, the Susquehanna County Tick-Borne Diseases Task Force was initiated, which was to be modeled after the State task force. Commissioner Arnold was charged with the oversight. No report or intent could be found publicized to date.
As part of the 21st Century Cures Act, Congress established the Federal Tick-Borne Disease Working Group in 2016 to develop a report of recommendations for federal response to tick-borne disease prevention, treatment, and research, as well as how to address gaps in these areas. Starting in December of 2018 the Working Group is required to submit a report every two years. The first report can be found at https://www.hhs.gov
These task forces were developed with instructions to include a diverse mix of individuals including patients and advocates.
Lyme disease is incurable and has become an epidemic. The number of newly reported Lyme disease cases has continued to increase at dramatic levels and is now found in all 50 states. Pennsylvania has reported the highest rate of increase over the past eight recorded years if continued this year will be 10 years straight. The CDC records going back to 2009 reported 4,950 new confirmed cases of Lyme disease. In 2017, the last year published, 9,250 new confirmed, and 2,650 new suspect or probable cases of Lyme disease were reported totaling 11,900. Suspect or probable cases were added in 2008.  This was to include those with positive serological tests, but without symptomology submitted by the attending physician.
The CDC estimates ten times the numbers reported due to lack of reporting, and diagnosis which means 119,000 new cases of Lyme disease in Pennsylvania for just the year 2017.
Since 2009, the CDC shows 61,985 new confirmed only cases. Multiply those numbers by the ten times they feel are not being recorded, and we are looking at 619,850 new cases of Lyme disease in the past eight years just in Pennsylvania.
If treated immediately some of these cases will do well, but many will continue to suffer the long-term effects of what scientists refer to as “persistent” Lyme disease cases. Medical definition and coding issues currently leave these patients un-treated or under-treated.
The medical community uses the term PTLDS or Post Treatment Lyme Disease Syndrome, which infuriates patients, advocates, and Lyme literate doctors, who highly disagree with the term as it leaves patients untreated and incapable of getting insurance to pay expenses for even maintaining their current condition. “Post Treatment” implies after treatment ends.
Many healthcare providers will withhold treatment if patients do not present with the typical bulls-eye or EM (erythema migrans) rash, even with several peer-reviewed reports indicating less than 40% ever experience a rash of any kind. Others treat even those who do with a single, seven to ten-day or twenty-Eight-day course of antibiotics and then label the patient as a “PTLDS” patient. These patients in many cases will show improvement at first and over time begin to revisit early signs and symptoms as well as new and worsening health issues. Recent research presented at the Columbia University Lyme Conference this past fall coincides with this, however, due to the severely outdated IDSA guidelines and those who follow them, PTLDS patients do not receive further treatment. These patients are left on their own accord to find healthcare providers who follow the ILADS guidelines for continued treatment. This treatment is generally paid for out of pocket not only for additional travel but also for the office visits, lab work, imaging, and pharmaceuticals and supplements as well.
National Guidelines Clearing House guidelines were updated and posted on the government website. The guidelines still stand; however, the web-page to access has been removed due to budget cuts. These guidelines were more up to date and helped to guide healthcare providers and their patients in decisions of testing and treatment plans. This needs to be re-instated, added to the PA Dept. Of Health page and updated promptly.
Scientists, Doctors, and patients who follow current studies and peer-reviewed trial publications that show the bacteria in different forms still active in these symptomatic patients refer to this lingering disease manifestation as “chronic” or “persistent” Lyme disease. Scientists refer to the bacteria that remain active as active persister cells or persistent infection. This persistence that continues to develop, is ongoing and/or develops worsening symptoms. Many other diseases have a series of diagnosis based on these same issues, yet PTLDS patients have only one that leaves them untreated or under-treated and without insurance coverage. Proper medical definitions, terms, and codes need to be initiated immediately for patients to start receiving the care needed at affordable rates.
Legislation is also needed to get this coverage implemented in a way to treat as cost-effectively and in the same manner as pharmaceuticals. Treatments proven in peer-reviewed trials to help patients include; chiropractic care, acupuncture, laser treatment, some supplements including oils and should be included at rates similar to those pharmaceuticals being used.
Alternate treatments such as; supplements, chiropractic care, counseling, physical therapy, and even acupuncture have shown effectiveness in many studies especially when combined, yet few are paid for by insurers at rates that patients can afford with current co-pays. These alternate treatment plans if covered in the same manner as pharmaceuticals with low co-pays, would allow more patients (not just Lyme patients), to return to a healthier quality of life.  When you increase the quality of life, you decrease costs not only medical but also disability costs, which have also been published in several reports by universities as well as governmental reports.
A general consensus among health care providers, insurance providers, as well as patients and advocates are needed to help provide the validity of this long term persistent form of Lyme and other tick-borne disease infections. The following are terms currently being used, with definitions that could be of use to get proper medical coding, as well as help, explain what this means to patients and interested parties.
Acute Lyme Disease: (ALD) Sudden onset, soon after a tick or vector bite. (If treated early and aggressively many times patients do well)
Chronic or “Persistent” Lyme Disease: (this still being debated) (CLD or PLD) persisting for a long time or constantly recurring. This stage should include patients who are treated but have returning, lingering, worsening and possibly migrating symptoms unexplained by other diseases, of which can be accurately confirmed.
Lyme Disease Remission: (LDR) or a temporary recovery, where the disease seems to be stable with no further complications but may have left behind permanent damage and is without treatment to keep patients stable. This stage may be due to persister cells that have changed form, to a cyst or L form of the bacteria which could reemerge at any time creating a flare in, or even new symptoms. This would include those who have only stagnant non-migrating remaining effects, in which continued treatment and testing cannot improve. This is the only area PTLDS may be useful, but only to the extent all therapies have been exhausted, there is no further improvement, and no return or change of symptoms once treatment has stopped. This would also be a case when the disease is carefully monitored for return of symptoms, new symptoms, or unexplained new health issues and if found moved back to the acute or persistent category so treatment may resume.
Post Treatment Lyme Disease Syndrome (PTLDS): (Currently used for all cases that continue to need monitoring and treatment after the initial course of antibiotics is used, which is determined by the attending physician.)
The most controversial term used, as many believe that it is why treatment is withheld to many who continue to decline in health. “Post-treatment” implies after treatment and many, who even with mounting evidence still do not believe that a “chronic” form of Lyme exists. Many patients never find a remissive state, while the disease may continue to cause damage. Studies have and are being conducted, showing the long-term effects. Some patients may maintain a stable level while being on a maintenance drug or therapy, but soon after stopping the therapy, symptoms return and/or continue to show declined health.  This term is too broadly used to define anyone who has received any kind of initial treatment, including those also continuing to be treated or maintained. Health care professionals who choose to treat these patients continue to fall victim of ridicule and board reviews. Laws enacted to protect physicians from these claims have done little to protect those who choose to treat. Peer pressure becomes the driving force behind those working in facilities that mandate following old outdated IDSA guidelines while patients continue to suffer.
A conference in RI held this past summer by Columbia University and Lyme Disease Association, brought together several top scientists and physicians in their field to discuss testing and treatment for these long-term suffering patients. The studies presented at the conference verified the effects of the bacteria. Charts and graphs were displayed showing the disease at the beginning of infection, with initial treatment killing off many bacteria but not eliminating it. After treatment, as the weeks and months passed the bacteria increased to higher rates of infection than the initial, which coincides with what patients are reporting with increasing symptoms, and a decrease in overall quality of life. These presentations also compared Lyme disease to cancer with remarkably like results.
Current Lyme disease testing is flawed, leaving many untreated. The conference scientists also revealed studies currently in progress for new improved testing and promising new treatment options that are in need of funding, FDA approval, and patients to volunteer for human studies.
Conference presentations also revealed studies that indicate a relationship to other diseases with unknown causes, such as Dementia and Alzheimer’s.
Pennsylvania has funded in part, some of these studies, but to select schools or universities, leaving patients and advocates to wonder of impartial treatment.  The current administration has increased funding to tick-borne diseases but it seems has directed the majority of the funding to tick surveillance and public education, while leaving patients and care for them at a severe shortfall.
The FDA has been given approval to fast-track some medical treatments that could use this to help Lyme patients, however, Doctors and facilities will not use this for Lyme disease due to the continued controversy and peer pressure surrounding the disease.
State and Federal funding are needed to deal with the alarming increase of new patients each year.
Priority should be placed on; patient care and centers, with new and repeated studies to follow the disease and progression as well as treatment plans. These studies should include harvesting past patient health information already computerized, and updated with information not already computerized, all while following HIPAA guidelines. Studies with patient involvement and full knowledge would be shared with universities and trials for updated treatment and testing.
Physician and care team education is also a priority, with healthcare providers willing to keep an open mind and increase their knowledge of tick-borne diseases. This education should include both infectious disease standards as well as ILADS standards to provide the most up to date evidence-based patient care possible.


Utilizing harvested information from the current patient computerized information would further reduce costs and threats to even more patients, especially with the single dose treatment that may leave more patients open to long-term suffering.
New studies also need to be a part of this patient-centered care, for those who are currently being diagnosed with Lyme and other tick-borne diseases, with emphasis on the newly found diseases. These studies need to be conducted with full patient knowledge and consent, and not just a blank signature box signed as they check in to receive care. New studies should be sent as bulletins to all treating Lyme and other tick-borne disease health care providers. These bulletins could be compiled and implemented immediately when peer-reviewed studies show positive results for the patient.
The studies of ticks have given the opportunity to find new diseases or newly noticed diseases that can be delaying improved health. Other Tick-borne diseases are still not being tested for when they are known to be in this area as suggested by even the current CDC guidelines.

Doctors have stated, “I do not want to treat Lyme patients because they take up too much of my time, and I don’t want to learn about Lyme disease either.” Others, who choose to make this field their profession, are so overwhelmed with new patients they are booked well over six months out.
The controversy needs to end, and patient care made top priority.
While Lyme Disease Coalition, Inc. is not a group of doctors and scientists with resources to provide the professional education needed for health care providers, we can and have provided; evidence-based information in educational presentations, social media pages, and a web site as well as advocating and attending legislative sessions for changes. The LDC, Inc. has also supplied books to our libraries, awareness, assisted surveillance, and supported the needs of the patients and their caregivers. Funding from private individuals and local businesses has aided in this effort. Government aid could also be directed to further these efforts as has been directed in past legislation. This includes partial funding to organizations to help educate the public as is done with most other organizations that provide services for the health and education of our communities, many of which have paid staff and staff assistance such as grant writing with scheduled reports for monitoring. Lyme Disease Coalition, Inc. is all-volunteer in need of a programs director/grant writer. If you would like to help please contact (570) 500-5963 or email [email protected].

by Colleen Schake
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