Long Term

A study followed 33,000 people in Scotland who had tested positive for Covid and 63,000 who had never tested positive, checking symptoms at six-month intervals. The study’s authors wanted to examine the long-term risks of Covid by comparing the frequency of symptoms in people with and without previous Covid diagnoses. Published on Wednesday in Nature Communications, the study found that, eighteen months later, one in twenty people who had been sick had not recovered at all. Another 42% reported only some improvement in health and well-being.i

This sounds like terrible news. And I admit that fear of long Covid is what kept me diligently masking for so long. Yet there is also good news here. According to Dr. Ziyad Al-Aly, chief of research at the V.A. St. Louis Health Care System, because the study uses a control group, researchers can accurately assess which symptoms are associated with long Covid (and not something else). “It also tracks with the broader idea that long Covid is truly a multisystem disorder… not only in the brain, not only in the heart – it’s all of the above.”ii

According to Dr. Jill P. Pell, senior author of the study and head of the School of Health and Wellbeing at the University of Glasgow, “Covid can appear differently in different individuals, and it can have more than one impact on your life…”iii

While long Covid is clearly terrible, I find good news in this report because

• It reminds us that researchers are diligently working to learn more about the long-term effects of a disease that many people are now dismissing; and
• Medical practitioners will be better prepared to help people with end up with long Covid as well as with other ailments with similar symptomatologies.

One of those other ailment which “is truly a multisystem disorder” and “can appear differently in different individuals” is chronic Lyme disease. For me and for the tens of thousands of people who struggle with the disease, this study and others like it offer great hope.

But wait, you say. Tens of thousands? That many?

An estimate based on insurance records suggests that about 476,000 are diagnosed and treated for Lyme disease in the U.S. each year.iv Although the CDC/NIH estimates a treatment failure rate of between 10-20%, the International Lyme and Associated Diseases Society (ILADS) found that among those treated early, 16% to 39% remain ill.v For those treated for chronic Lyme, estimates range from 26% to 50%.vi (These numbers do not include those who never learn they have Lyme.) Using the CDC’s old estimate that 300,000 people in the U.S. contract Lyme each year, Lorraine Johnson, CEO of LymeDisease.org, offers a prevalence chart. (Disease prevalence is the cumulative number of people who get a disease and remain ill – whether treated early or later.vii)

Even in the best case scenario, that would be 300,000 people within ten years. A more realistic number would be between 600,000 and 1.2 million in the same timeframe (and many people have had Lyme for decades). So I greatly underestimated when I said tens of thousands.

A survey of about 3,000 patients with chronic Lyme disease found that more than 70% reported only fair or poor health.viii 

This suggests that a great many people are suffering from an ailment that can be as debilitating as long Covid but without the press, and often without support of no medical professionals who take them seriously even if they don’t know how to help, insurance that covers their treatment, or even family support. In short, without a social or a medical safety net.

If there are blessings to come out of this pandemic, my prayer is that better care for chronic Lyme patients will be one of them.

i     Damian McNamara, “For Many, Long COVID's Impacts Go On And On, Major Study Says,” WebMD, last viewed on October 15, 2022, https://www.webmd.com/lung/news/20221012/for-many-long-covids-impacts-go-on-and-on and Benjamin Mueller, “Nearly Half of Covid Patients Haven’t Fully Recovered Months Later, Study Finds,” New York Times, October 12, 2022, last viewed on October 15, 2022, https://www.nytimes.com/2022/10/12/health/long-covid.html?campaign_id=154&emc=edit_cb_20221014&instance_id=74673&nl=virus-briefing&regi_id=126117459&segment_id=110042&te=1&user_id=c32140b396f770fc82f0c145275a76b0.
  
ii    Benjamin Mueller, NYT.
  
iii   Benjamin Mueller, NYT and Damian McNamara, WebMD.
  
iv    CDC, “How many people get Lyme disease?” last viewed on October 15, 2022, https://www.cdc.gov/lyme/stats/humancases.html.
  
v     “Lyme Basics: Chronic Lyme Disease,” last viewed on October 15, 2022, https://www.lymedisease.org/lyme-basics/lyme-disease/chronic-lyme-disease/. While I have found lymedisease.org to be a helpful resource in my own Lyme journey, I cannot assure the reader that everything presented there is fact-checked and without bias.
  
vi    “Lyme Basics: Chronic Lyme Disease.”
  
vii   Lorraine Johnson, “Growing Number Of Chronic Lyme Patients – Still No Government Action Plan?” July 11, 2015, last viewed on October 15, 2022, https://www.lymedisease.org/lymepolicywonk-growing-number-of-chronic-lyme-patients-still-no-government-action-plan/
  
viii  Lorraine Johnson, Spencer Wilcox, Jennifer Mankoff, Raphael B. Stricker, “Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey,” March 27, 2014, https://peerj.com/articles/322/ referenced in “Lyme Basics: Chronic Lyme Disease.”