We live in an age where the news, including medical research reports, can be spun in so many different directions to hide the truth that we all know. Researchers reported that a “notably small percentage of children took longer than six months to recover from Lyme disease” but their definition of “notably small percentage” is 22%. They don’t think that parents should be concerned that 1 in 5 children who get chronic Lyme disease take more than 6 months to recover. Furthermore:
“…9% had symptoms classified as PTLD syndrome. Six percent of the children were not fully recovered at the time of the survey, with 1% experiencing symptoms significant enough to impair daily functioning, the authors noted.” (Science Daily)
They spin these concerning statistics as, ‘don’t worry, be happy’. The spin is so impressive, in fact, that I almost got dizzy reading the paper.
First of all, many patients with Lyme disease will tell you that their experience was no walk in the park. While stories of “summer flu” symptoms in which patients bounce back in a week or two abound, lives changed for years and decades fill the clinics of functional medicine thanks to conventional medicine’s neglect of the reality of the issue. Both adults and children frequently continue life with non-descript but very real symptoms, even disabilities secondary to this little bacteria. Chronic headaches, chronic fatigue, chronic anxiety or depression, chronic joint pain, and more may plague sufferers, leaving them to the rotating conventional medical specialists none of which do more than offer symptom bandaids.
With the potential long-term severity and its impact on the lives of all ages, let’s consider the scope of the problem and whether 22% is a reassuring number or not. The most recent CDC estimate for yearly Lyme disease report cases is over 470,000. Their website attempts to downplay this but must admit that the numbers are rising each year over the last 1 to 2 decades. Beyond the total number, a different paper by Schwartz etal in 2017, published confirmed and probable Lyme cases by age range for 2008 to 2015. A quick look at their graph will show that Lyme diagnosis peaks in the 5 to 9 year old group and in the 50 to 60 year old group. Clearly, a large number of children get Lyme. Getting more granular in the data, for that 7 year time frame, we can see that over 8,000 children age 0 to 4 years, over 17,000 children age 5 to 9 years, and over 14,000 children age 10 to 14 years were confirmed diagnoses of Lyme over those years. This calculation gives us at least 39,000 children we know have acute Lyme.
Now, take 1 in 5 of those children and project that at least 7,800 continued to have symptoms for at least 6 months and 390 experienced debilitating symptoms over 6 months. All this assumes that the children received the standard medical therapy. No estimate is known for those who were not properly diagnosed and therefore received no therapy. While the CDC can continue to claim that the 470,000 per year estimate is overstated, I would continue to claim that it is an underestimate. True, parents should not necessarily constantly fear their children getting Lyme disease, but if their child does get Lyme disease, who really thinks a 1 in 5 chance of chronic symptoms is acceptable?
Ultimately, the reassurance by the study authors leaves one a little underwhelmed. They are forced to admit that 1 in 5 children continue to have symptoms after 6 months, with some who they are forced to categorize as Post Treatment Lyme Disease syndrome (PTLD). Their opinion that having 9% of children with functional impairments at 6 months or longer leave me concerned about their perspective on childhood. Given the 2008 to 2015 surveillance totaled 275 thousand cases and we are now counting 476 thousand per year, multiplying the percent of pediatric cases in the former, we get maybe over 60 thousand children per year with Lyme disease. If you take 1 in 5 to have continued symptoms, we now have possibly 12,000 children per year with chronic Lyme and maybe 5,000 with chronic limiting symptoms.
Building on this every year, we have a undeniably growing number of children and young adults with debilitating symptoms. If similar percentages apply to the whole group including adults, we have maybe 90,000 per year with chronic Lyme. The paper asks for more research, but until the broader medical world gets past the spin that this chronic disease is no big deal or just doesn’t exist, we will not get a medical system working to restore healthier more abundant lives post Lyme disease. Functional medicine providers are left to turn off the spin cycle and actually treat the patients who flood our clinics with Lyme disease and other tick-born illnesses.
Primary article in focus:
Monaghan, M., Norman, S., Gierdalski, M. et al. Pediatric Lyme disease: systematic assessment of post-treatment symptoms and quality of life. Pediatr Res (2023). https://doi.org/10.1038/s41390-023-02577-3
Science Daily Summary:
NIH/National Institute of Allergy and Infectious Diseases. (2023, April 21). Study shows most children recover from Lyme disease within six months of treatment. ScienceDaily. Retrieved May 2, 2023 from www.sciencedaily.com/releases/2023/04/230421112640.htm
Schwartz AM, Hinckley AF, Mead PS, Hook SA, Kugeler KJ. Surveillance for Lyme Disease – United States, 2008-2015. MMWR Surveill Summ. 2017 Nov 10;66(22):1-12. doi: 10.15585/mmwr.ss6622a1. PMID: 29120995; PMCID: PMC5829628.
Sanctuary Functional Medicine, under the direction of Dr Eric Potter, IFMCP MD, provides functional medicine services to Nashville, Middle Tennessee and beyond. We frequently treat patients from Kentucky, Alabama, Mississippi, Georgia, Ohio, Indiana, and more... offering the hope of healthier more abundant lives to those with chronic illness.