Years ago, I worried that I was losing my mind. As I’ve described before, I had sudden-onset panic attacks and became so paranoid that I for a time had my groceries delivered so that I wouldn’t have to go to the grocery store, where I felt other people were inexplicably staring at me. I was going crazy, beyond anxiety caused by living in Washington, D.C. Ultimately, I was re-diagnosed with Lyme disease—over 15 years after my initial diagnosis at age 19—and with treatment came relief from much of the physical pain and mental anguish.
Over the past year, I have at times pinched myself (really) to discern whether I am asleep. I’ve wondered whether I may have slipped into a coma and perhaps everything surreal that has happened has been some kind of fever dream. It’s a vastly different kind of insanity, as the chaos in my life has come from outside, from the political circus that has driven not only the United States but the whole world over the past year. For many of us, this has not been a time of great hope.
Those of us who have navigated the surreal (how did that word become the best descriptor for real life?) nature of Lyme disease, both the symptoms and attempts to find medical treatment, suddenly have several opportunities to find hope in the waters of chaos.
Burgeoning Lyme Disease Research
Although Lyme disease research is vastly under funded by the United States government compared with other less common and usually less severe infectious diseases such as West Nile, research marches on, and bit by bit it is beginning to unravel many of the mysteries of Lyme disease, which appears to be at least as complex from a pathological standpoint as any known disease to date. Research coming from Johns Hopkins University, for example, shows that Lyme disease “persister” bacteria—those that survive typical antibiotic treatment—may be vulnerable to uncommonly used antibiotics in combination. I learned from the International Lyme and Associated Diseases Society that there has been a resurgence of interest in investigating the role of Lyme disease in triggering mast cell activation syndrome (MCAS), observed as far back as 1999, which may explain a great number of symptoms in patients who are described as suffering post-Lyme disease treatment syndrome. Headway is being made into another contentious mystery illness, Morgellons disease, which has devastated lives of many people including musician Joni Mitchell, and yet which has been dismissed as a myth for years despite physical evidence. Recent research has linked Morgellons to Lyme disease, as the filamentous growths or “fibers” that Morgellons patients report have been determined to contain Borrelia burgdorferi, the bacterium that causes Lyme disease, along with other species of Borrelia.
Federal Investigation & Prioritization of Lyme Disease
In December, President Obama passed the 21st Century Cures Act, which includes a specific clause that requires reform in the ways that Lyme and other tickborne diseases are addressed by the federal government. This is extraordinarily significant, and is a reason for Lyme disease patients, physicians and other advocates to be both hopeful and vigilant.
- From an advocacy standpoint, the legislation was a hard-won “win,” and the legislation almost backfired on patients. The Cures Act’s Lyme disease provision was crafted with input from patient advocacy groups; however, just before it was set to be introduced to the U.S. House of Representatives, the Lyme disease language was rewritten in such a way that it would make life worse, not better as was originally intended, for Lyme patients. Immediately, Lyme disease advocacy groups including the Lyme Disease Association, Hudson Valley Lyme Disease Association, Lyme Disease.org, Lyme Action Network, Tick Borne Disease Alliance and Global Lyme Alliance, Patient Centered Care Advocacy Group, and NatCapLyme collaborated to take action. House Majority Leader Kevin McCarthy (R-Calif.), Energy & Commerce Committee Chairman Fred Upton (R-Mich.), Congressman Christopher H. Smith (R-N.J.), Co-Chair of the House Lyme Caucus, and Congressman Chris Gibson (R-N.Y.) worked to restore the Lyme disease provision to its originally intended version.
This swift and decisive action, both on the part of Lyme organizations that historically have not always agreed on priorities, and by members of U.S. Congress is encouraging. It suggests that, finally, recognizing a plague that is affecting millions of Americans sometimes to the point of disability and sometimes causing tragically premature deaths due to sudden heart failure, has become a national priority.
- The 21st Century Cures Act calls for the establishment of a federal Tick-borne Diseases Working Group that must be comprised of both federal researchers and independent individuals, including medical practitioners from a variety of disciplines, and Lyme disease patients. According to the bill, “The Working Group is to provide expertise and review all efforts within the Department of Health and Human Services (HHS) related to all tick-borne diseases, help ensure interagency coordination and minimize overlap, and examine research priorities.”The working group could work either for or against Lyme disease patients, depending who is appointed to it, and so Lyme disease patient advocates must be extremely vigilant about watching developments and vocal about who is appointed. Many of the federal appointees are bound to come from the U.S. Centers for Disease Control and Prevention (CDC), National Institutes of Health, and other federal organizations. Under the leadership of Thomas Frieden, the CDC historically has been resistant to Lyme disease parity, having chosen to address Lyme disease publicly with the exclusive focus on prevention—not improving flawed diagnostic testing or researching the pathology and treatment of this highly complex disease. Frieden’s CDC has aligned itself with the Infectious Diseases Society of America (IDSA), choosing inexplicably to endorse the IDSA’s Lyme guidelines even a year after the federal Agency for Healthcare Research and Quality’s National Guidelines Clearinghouse removed the IDSA guidelines for having been long overdue for updating based upon current science. This is especially bizarre because both the NGC and the CDC fall under the Department of Health and Human Services; yet, the NGC has accepted, recognized and listed the ILADS guidelines, which it has determined to meet all federal regulations, and the CDC rejects those guidelines in favor of the IDSA’s, which have been determined by the federal government to be based on outdated science. In August, Lyme disease patients petitioned the CDC to end its preferential treatment of the IDSA, and as revealed in a striking but shockingly underreported story published by The Hill, the newspaper of Washington, D.C.’s Capitol Hill, group calling itself CDC Scientists Preserving Integrity, Diligence and Ethics in Research, or (CDC SPIDER) asked Congress to investigate the CDC for unethical behavior. This group of CDC staff—who despite federal whistleblower protection laws felt a need to make the statement anonymously for fear of retribution from Frieden’s agency—stated that CDC scientists “are often directed to do things we know aren’t right.” This is a stunning statement, and one that needs to be addressed immediately, as the CDC is responsible for the public health and well being of United States citizens; if it is not doing this, it is undermining its own mission.
On December 31, Thomas Frieden announced that he will be leaving the CDC effective January 20, the day Donald Trump will be sworn in as president. Trump will need to appoint a new CDC director, and this could be an opportunity to revise federal Lyme practice with a focus on patient well being. Trump reportedly was supportive of his former wife Marla Maples following her Lyme disease diagnosis three decades ago. Maples told New York City news team Fox 5 NY that many of her symptoms have persisted all these years.
Hopefully, Trump’s personal experience with Maple’s Lyme disease will inform his appointment and his administration’s attention to Lyme disease.
Regarding the developing Lyme working groups, patients need to be vigilant for a few things:
- The IDSA Lyme guidelines that were rejected by the National Guidelines Clearinghouse are currently being rewritten. Paul Lantos, MD, who is serving as the chair of the IDSA Lyme guidelines’ self-review, told me that “the guideline being written now is not an “IDSA” guideline and you won’t hear any of us refer to it that way. This guideline is a joint and equal effort of the American Academy of Neurology (AAN), American College of Rheumatology (ACR), and the IDSA.” This may be concerning for a few reasons: First, many Lyme patients—and this has been my own experience, which I discussed in The Guardian—are referred by our regular physicians to both neurologists and rheumatologists when we present with complex Lyme disease symptoms. In many cases—again, as was my own experience—these specialists often suspect multiple sclerosis, ALS, lupus, Sjogren’s syndrome or other better-understood diseases and test patients for these. Failing positive diagnosis for these diseases, specialists far too often defer to “anxiety” as a likely cause of even the most severe neurological and arthritic symptoms of Lyme disease. Because in my experience neurologists and rheumatologists almost never make Lyme disease diagnoses—they are inclined instead to refer patients they suspect of having Lyme to an IDSA-affiliated infectious diseases specialist or, if they are better informed, to an ILADS-affiliated Lyme disease specialist. This means that the neurologists and rheumatologists who IDSA has selected to co-author its guidelines almost certainly will simply defer to the IDSA’s opinions, which includes dismissing a great deal of peer-reviewed Lyme disease research published in non-IDSA-owned journals. And yet by expanding the review to include two widely respected additional medical associations, the perception of IDSA’s biased and limited Lyme guidelines may be assumed to be a scientific consensus as the two other organizations that are not familiar with Lyme defer to the IDSA’s opinion. This is a great concern, and the concern could expand to the federal working groups, as the IDSA no doubt will campaign to have its predetermined and pre-indoctrinated affiliates from the AAN and ACR “stacked” into the federal working groups, thereby influencing the opinions of the working groups to align with the IDSA opinion and to diminish the lived experiences of the one or two patients who may be assigned to the non-federal working group. Lyme patients and members of U.S. Congress need to be extremely vigilant about this likely event and be willing to speak out against any anti-patient bias as the working groups are implemented. Given that the IDSA Lyme guidelines panel includes high-profile anti-patient reviewers such as Paul Auwaerter, the revised guidelines are almost certain to continue to deny emerging science that proves the persistence of Lyme disease symptoms despite short-term antibiotic treatment.
- While the Lyme disease provision of the 21st Century Cures Act sounds great, it unfortunately does not provide any funding at all for additional Lyme disease research. This is a great disappointment because funding is needed, and because looking at NIH allocations for other infectious diseases reveals a tremendous bias against Lyme: Over 300,000 cases per year, dismissed as insignificant and warranting $24 million in NIH funding, in favor of Zika’s emergency status (like SARS, swine and bird flus, Ebola), which is the top priority at CDC and to which Congress last year considered dedicating $622 million to $1.1 billion in response to the White House’s request for $1.9 billion. CDC Director Tom Frieden was quoted in the New York Times as saying: “Three months is an eternity for control of an outbreak,” he said, adding: “There is a narrow window of opportunity here and it’s closing. Every day that passes makes it harder to stop Zika. This is no way to fight an epidemic,” Frieden said. To date, Zika has affected 216 people on American soil. Annually, over 300,000 Americans contract Lyme disease in this country. Think about those numbers. You can count to 544. Try counting to 300,000. So while the working group may recommend research, the Lyme provision of the new legislation will not provide any funding for Lyme disease research—funding must be found elsewhere. Perhaps under new leadership, the CDC will urge for Lyme disease research funding as Frieden urged for Zika funding while choosing to ignore Lyme disease altogether.
Both in the United States and Canada, Lyme disease has affected so many people that it has become impossible to ignore—despite the CDC’s truly inexplicable history of doing so. Canada historically has followed the CDC’s guidelines for diagnosing and treating diseases, but finally was forced to break with this convention because of the devastation being caused in Canada by Lyme disease. Its unprecedented Lyme Disease Framework law sounds a bold and frankly shocking alarm call about this country’s handling of Lyme:
“…the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness…”
This assertion is unambiguous and frankly recalls the Tuskegee syphilis experiments in which black American men were refused diagnosis and treatment of syphilis by a federally sanctioned and administered program, with the cooperation of medical doctors who happily forwent their Hippocratic oath for the sake of being part of a federal project. This program was carried out by the U.S. Public Health Service—the federal agency that was succeeded by the CDC—and it has been roundly condemned in a historic context. So how can the government continue to recommend refused medical treatment and, as the Canadian legislation observes, “abandoning sick people with a treatable illness”?
The new year will usher in new opportunities to address the Lyme disease epidemic, and a great deal of potential positive outcomes will be determined by who Congress appoints to the federal Lyme working groups, and who the new president appoints to oversee the CDC.
The American public need to wake up to this disease, as it infects one in every 100 Americans each year, and prevent any further devastation.