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.”

Coping with Covid

Life has been a real roller coaster these last two years, hasn’t it?

Record storms and fires, a contested U.S. presidential election followed by an attack on the Capital when the sitting president didn’t like the results. Oh, and a pandemic that just won’t quit. (Who would have thought there’d be this kind of world-rattling pandemic in our lifetimes? Not I.)

Life has been turned upside-down for many of us.

• Remote work as kids attend school virtually.

• Rampant unemployment and resignations.

• Grocery store shelves emptied of toilet paper and hand sanitizer.

• Hospital oxygen supplies depleted.

• Masking. Having to consult the NIOSH Certified Equipment List to be sure the N95 masks you buy are legitimate. (According to the CDC, 60% of respirator masks sold in the U.S. are counterfeit.) The CDC suggests double-masking as a substitute which I did for tai chi class but with Omicron raging in Wisconsin I also ordered (real) KN95 masks.

Life has been and is likely to remain crazy for the foreseeable future.

How are you managing? Are the habits you set in place during calmer days still working? Are you leaning on less-healthy practices more than you'd like?

Because of being sidelined by Lyme disease – I’d been working on an exit-plan long before Covid-19 struck – my situation is a little different. These last 18 months were spent nurturing my body and mind and working toward healing. Until last fall, I’d confined myself to home except for medical appointments, 14-minute grocery runs and get-togethers with my bubble-friend. 

That said, my habits have not been good. Oh, food and drink intake are generally good (except for holidays) and I’ve been sleeping well. (What a delight that is!) But I have two struggles:

1. While I say that meditation and yoga are important for my well-being, I don’t make them happen. Every effort at scheduling fails. My Google calendar has three (3!) weekly commitments with lots of blank space. I make plans but too often don't follow through. 
   I am playing piano regularly so there’s good along with the mediocre. But what will happen when I start working again if I can’t make these into habits now?

2. Then there’s Sudoku. I learned to remove Solitaire from devices so that I don’t lose whole days mindlessly. I had hoped that deleting the Sudoku app from my tablet would free me from this black hole. But one day I found that I could casually play online. Oh, dear.
   I tell myself that having something with which to check my fatigue level is beneficial – if on good days I can solve “Evil” puzzles, then when I find “Hard” ones taxing I can cut back on other activities. This works (but at what cost?) since I can solve most puzzles. I say this not with pride but with an awareness that I spend entirely too many hours at it. 

I am a work-in-progress. That's okay.

I might write about shame another day. For now, I’ll simply say that when I feel inclined to keep something to myself I look for a way to shine light on it. That’s one of my reason for sharing this story. (None of us need more shame.)

Another reason is so that I might have credibility when I ask how you are managing. Life is wonderful but it can also be a bear – and there’s been a lot of bear lately.

If you’re reading this, you already know suggested ways to help yourself. Mayo Clinic offers a good list. I might add:

• Do more of what nourishes you and, where possible, less of what depletes you.

• Find ways to help others.

• Allow yourself time simply to be. We’ve been trained to be “human doings” but we need the other as well. “Being” freshens the mind and enhances creativity.

• Hum. Yes, this sounds strange. But years ago I read that humming eases anxiety and it works for me. If you’re not musical, hum tunelessly. It the physical action that matters.

That’s it for today. Stay healthy. Be safe.

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