Is this becoming a trend? Another opinion piece on Lyme disease that dismisses post-treatment and chronic Lyme disease. The author calls these debilitating stages of Lyme an “identity” for people rather than an illness. And ridicules patients for finding solace online, in a community of people who are suffering from the same illness. Can you imagine someone writing an article that dismisses patients with late-stage Alzheimer’s, another illness that relies on a combination of clinical diagnosis and laboratory tests?
The story, “Maybe It’s Lyme. What happens when illness becomes an identity?,” by Molly Fischer feigns to take a fact-based approach. Yet when she cites Global Lyme Alliance (GLA), not once is there a direct quote, but rather second hand accounts from fundraising events. In one sentence the author states, ““chronic Lyme,” which can encompass a vast range of symptoms and need not be linked to any tick bite — has grown into a phenomenon often untethered from scientific method or peer review.” Yet if she had referenced the multitude of peer-reviewed studies on the GLA site or performed even a modest Google search for “Lyme disease research”, she would have found the science she quickly dismissed as lacking.
Does more research need to be done to better understand the persistent and chronic form of the disease? Absolutely! If she had called to speak with one of our two in-house Ph.D.s they could have had an in-depth conversation about tick-borne disease research, from basic science, understanding the persistent form of the bacteria, to treatment options. But that didn’t happen. Unfortunately, articles like this, that dismiss and mock Lyme patients, hinder that progress because it influences the community that more research is not needed. Articles like this delay progress and ultimately hurts patients.
There is one item in the article we can agree with. Yes, there are some Lyme physicians who treat without science, studies, or clinical trials to support their protocols. Some are more genuine than others. But as in the early days of HIV, before protocols were developed, many doctors were forced to try various treatment options, looking for the right combination that would alleviate pain and suffering. And yes, patients desperate to feel better subscribe to these treatments. But what else would you suggest they do? There is no standard of care for anything beyond acute Lyme disease. And even that doesn’t work for everyone, with 10-20% continuing to suffer symptoms.
What does the author prescribe for the two million patients that will suffer from post-treatment Lyme disease by 2020? And the untold number of patients who did not have the “fortune” to be diagnosed and treated early in the disease, that while the bacteria had time to move to the patients’ heart and other organs, the illness got worse and worse, and then harder to eradicate.
The bottom line? We must work together to help patients, not tear them down.
GLA invites anyone needing facts about Lyme disease to reach out to us.
As we approach Thanksgiving, many of us pause to reflect on why we are thankful.
Without a doubt, the challenges with Lyme remain—better diagnostics and improved treatments are still sorely needed. But there are some things we and others in the Lyme community can be grateful for this year:
More Celebrities Speak Out
Supermodel Bella Hadid and President-elect Trump’s former wife, actress Marla Maples, were honored by GLA in 2016. They joined a growing list of celebrities who are turning the spotlight on Lyme disease, including singer Avril Lavigne; TV personality Yolanda Hadid; basketball superstar Elena Delle Donne; TV producer and author Ally Hilfiger; Daryl Hall; Marisol Thomas, wife of Matchbox Twenty frontman Rob Thomas, among others.
New State Laws Help Lyme Sufferers
Maryland’s first ever Lyme disease law requires healthcare providers and medical laboratories that draw blood for a Lyme test to give patients a written statement explaining the potential for inaccurate test results. In Massachusetts, health insurers must now cover long-term Lyme antibiotic treatment prescribed by a licensed physician.
Increased Research Interest
GLA received a record number of 31 grant requests for 2016-2017 research funding, an 80 percent increase over the previous year. This year’s applications are from researchers at top-tier universities in the United States, Australia, France, Switzerland and the United Kingdom. While their areas of research are diverse, it’s clear that the tick-borne disease community is zeroing in on unraveling the complexity of Lyme disease.
IDSA Guidelines Removed from Federal Database
Outdated Infectious Diseases of America (IDSA) guidelines were removed early this year from the National Guidelines Clearinghouse (NGC), a federal database used as a reference for physicians and healthcare practitioners in treating Lyme patients. The guidelines, currently undergoing revision, have for years restricted antibiotic treatment of Lyme patients to between two and four weeks. At present, only the guidelines from the International Lyme and Associated Diseases Society (ILADS) are on the NGC.
Increased Media Coverage of Lyme
FOX5 News aired two specials watched by tens of thousands called “Lyme & Reason: The Cause and Consequence of Lyme Disease” and “Lyme & Reason 2:0: Lyme Disease & The Voices of Change.” In addition, Lyme disease stories aired on WNET/MetroFocus, WBUR/PBS, CBS and local outlets as well as in national publications such as Huffington Post, Science, Town & Country, and others.
Most of All
… we are grateful for the unwavering support of Global Lyme Alliance’s volunteers, donors, and friends. Please help us accelerate progress in the fight against Lyme and join us in our Quest for the Test, GLA’s global effort to raise funds for a critically needed Lyme diagnostic test.
Wishing you and your loved ones a Happy Thanksgiving.