As TBD Working Group closes down, I offer seven final suggestions
Since 2017, the federal Tick-Borne Disease Working Group has been a big part of my life. I watched all 25 TBDWG meetings, many of which spanned two days.
I live-tweeted the proceedings of each one on behalf of LymeDisease.org.
I served on the panel’s tick ecology subcommittee, which involved additional hours of meetings. Furthermore, over the past six years, I have provided 25 written and/or verbal comments to the Working Group.
The Working Group held its final meeting on November 21. Here are the last written comments I submitted:
I’d like to thank all the members of the Tick-Borne Disease Working Group for your service. I have been witness to every meeting since the groups’ inception and am really impressed at the progress that has been made over the past six years, including the adoption of a national strategy for vector-borne disease, the inclusion of alpha-gal syndrome and maternal Lyme disease on the CDC website.
While we have made some progress, we still have work to do. Here are my top priorities:
We need a better diagnostic test for Lyme disease. A perfect test would be 100% sensitive and could also determine when the infection has been cured. Accurate early diagnosis would improve treatment outcomes and lead to fewer patients with persistent symptoms.
Currently, there are three main hypotheses regarding potential mechanisms of chronic Lyme: immune inflammation and dysregulation; persistent infection and/or lingering antigens including co-infections; and neural network alterations. (Bobe 2021)
An accurate diagnostic would solve the question of which treatments are most effective and it would end the controversy of when and how frequently persistent infection is the cause of persistent symptoms.
Because ticks can carry multiple human pathogens, ideally we could develop a single test that is capable of detecting the most common tick-borne pathogens in humans similar to the veterinary panel used for dogs.
We need better treatments and treatment options for Lyme disease, including off-label and combination use of FDA approved medications. For instance, a 2019 study out of Johns Hopkins University found that a triple-drug combination was the only method successful in eradicating the infection in mice. (Feng 2019)
Even in a best case scenario following acute diagnosis of Lyme disease, roughly 30% of patients treated with current IDSA-recommended courses of antibiotics continue to have moderate to severe symptoms. (Aucott 2013) And for patients who are misdiagnosed and/or receive a late diagnosis, the treatment failure ratio is even higher. (Johnson 2018 )
In fact, a delayed diagnosis is a huge contributing factor as to why millions of patients are left with debilitating symptoms after standard treatment for Lyme. (Hirsch 2018) During the months to years that patients are suffering, the untreated infection spreads throughout the body, embedding itself deeply into connective tissues where standard antibiotics have a hard time reaching. (Embers 2012, Cabello 2017, Caskey 2015) One study demonstrated a delay in treatment by as little as 9-19 days is predictive of persistent Lyme symptoms. (Bouquet 2016)
We need to update the treatment recommendations on the CDC website to include patients with neurological Lyme disease and persistent symptoms following treatment. Unfortunately, there is no standardized treatment for this patient population. The last NIH-funded treatment trial for patients with persistent Lyme disease was over 25 years ago and it did not reveal a solution. (Klemper 2001, Krupp 2003, Fallon 2008, Fallon 2012, Goswami 2013)
Lyme arthritis is the best understood and most studied manifestation of Lyme disease. Even Dr. Allen Steere, who first described Lyme arthritis in 1979, prescribes longer courses of antibiotics. (Steere 1979) In 2015, Dr. Steere wrote: “In our experience, some patients do require longer courses of antibiotic therapy for effective treatment of Lyme arthritis. Thus, if there is mild residual joint swelling after a 30-day course of oral antibiotics, we repeat the oral antibiotic regimen for another 30 days. However, for patients who continue to have moderate-to-severe joint swelling after a 30-day course of oral antibiotics, we treat with IV ceftriaxone, 2gm/day. Although there is trend toward greater efficacy with 4 weeks compared with 2 weeks of antibiotics, there is also a greater frequency of adverse events.” (Arvikar, Steere 2015)
The CDC needs to include the extended treatment options for Lyme arthritis to patients with persistent neurological symptoms following standard treatment.
Remove the recommendation of a single dose of doxycycline from the CDC website listed as “Tick Bite Prophylaxis.” The fundamental goal of health care is to help patients find a rapid and proper diagnosis, receive the appropriate treatment, and return to a normal health. To shorten the duration of illness, it is imperative that the CDC recommend only those treatments that will reduce the number of people who remain ill following treatment for Lyme disease.
What we know from animal studies is that undertreatment of Lyme disease is predictive of persistent Borrelia burgdorferi infection. (Bobe 2021) How many patients with chronic symptoms of Lyme disease are a result of undertreatment with doxycycline? Doxycycline is a bacteriostatic drug meaning it does not kill Borrelia. Rather, in ideal environments, doxy slows the growth of the bacteria long enough for the immune system to recognize and kill it.
Current evidence DOES NOT support giving only one dose of doxycycline, because it DOES NOT ensure the best outcome for patients with Lyme and other tick-borne diseases. I would ask that the Tick-borne Disease Working Group encourage the CDC to remove the recommendation of doxycycline prophylaxis until further proof exists of the ability for a single dose of Doxycycline to kill Borrelia burgdorferi in humans.
We need to design treatment trials for patients with co-infections including Bartonella—one of the most common vector-borne disease in the world today. The issue with many of these co-infections is they are not all treated with the same prescription medication as Lyme disease.
For instance, a patient may receive a diagnosis of Lyme and be prescribed an antibiotic, but they may also have an undiagnosed Babesia infection which requires an anti-parasitic medication. As a result, this patient may not get well until all the infections are treated properly. Unfortunately, there are no clinical trials on the most effective method to treat patients with co-infections.
I suggest that all laboratory research be scrutinized for the method of innoculation (how the animal is infected.) Recent discoveries as to the contributing factors of tick saliva in the transmission of Borrelia and other pathogens warrants a stronger look. (Strobl 2022) During feeding, the composition of proteins in tick saliva changes to include mechanisms that block pain and itch, dilate blood vessels, prevent the blood from clotting, and suppress the host immune response. (Bobe 2021)
Not only do these salivary molecules affect the host, they also trigger and potentially alter the pathogen(s). Without the presence of tick saliva, it is possible researchers are not seeing the true pathogenicity of Borrelia and other tick-borne pathogens. Any tick-borne disease studies done in the laboratory should be done via tick inoculation rather than needle inoculation.
Finally, we need to improve clinician education to include the fact that an erythema migrans (EM) rash rarely presents as a bull’s-eye shape. While a bull’s eye rash is diagnostic of Lyme disease, a recent study found only 6% of Lyme lesions looked like a bull’s eye or ring-within-a-ring. (Schotthoefer 2022) Unfortunately, the misconception of a classic bull’s-eye rash often leads to people being told they do not have Lyme disease when they actually do.
Thank you for your time,
LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. She served two terms on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @ Email her at: email@example.com.
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