I'm Still Here! COVID on Top of ME/CFS

Ironically, just three days after my last post, 2024 Mid-Year Update: Yeast, Diet, NO Crashes, COVID hit me with full force. For the last 13 days, I've been badly crashed, living life horizontally, though I am slowly improving now. Here's a brief recap to bring you up to date:

How Did I Get It?

Good question! I don't go out a lot, I avoid crowds when I can, and I always wear a mask in public. When I started feeling sick on July 13, my husband had been away for a week. Our son lives with us, but he's not around much! He and I did have breakfast together Saturday, but my symptoms began that evening, so I didn't get exposed through him. With my husband away, I did see a few friends during the week and ran a few errands (wearing my mask). A friend came here Tuesday (specifically to reduce my risk), and I met two friends at a restaurant for dinner Thursday evening. I rarely eat in restaurants because obviously, you have to remove your mask to eat, but we were at a table in a far corner without anyone else nearby, and we went early, while it was still pretty empty. Still, I could have been exposed from our waitress. None of those three friends had any symptoms or got sick. Typical incubation period for COVID is anywhere from 3-8 days, so who knows?

Course of the Illness So Far

It started with a severe sore throat Saturday evening. While sore throats were a typical part of immune activation for me in the early years of ME/CFS, I don't usually get them anymore. The severe sore throat, plus swollen glands, continued for about a week and has gradually cleared up. I was pretty sure right from Sunday that I had COVID because of the severity of the sore throat, I hadn't done anything to overdo (and as I explained in that last post, hadn't crashed from over-exertion in 7 months in spite of being very active), and I just don't catch other viruses (the immune dysfunction typical of ME/CFS makes our immune systems over-react to viruses and allergens). I haven't had a cold in decades. I also read that this very severe sore throat (it hurt even to swallow water) is very common in the recent COVID variant that's on the rise right now.

Besides the sore throat and swollen glands, I felt feverish, though as is typical for me, didn't have much of a measurable fever. My "normal" temperature runs about 97.5 F, and the highest it went (that I measured) was about 100. And of course, I was just completely crashed - absolutely exhausted, zero energy, no stamina, couldn't even sit up for more than a few minutes. I also developed some mild sinus and chest congestion and mild cough. Those symptoms are slowly improving.

I tested negative for COVID on Sunday and Monday before finally testing positive on Tuesday. Did you get that? No positive test until Day 3 of symptoms. Last time my son had it, it was Day 5 before he finally tested positive. It is SO important to keep testing if you or someone near you is sick and has the symptoms of COVID and to isolate from the first symptoms.

Paxlovid

Just on heavy suspicion of COVID, I messaged my primary care doctor Monday morning to ask for Paxlovid, the antiviral combination that works most effectively against COVID. She's known me for 21 years and was the first to accurately diagnose ME/CFS in me, so she gets it. Unfortunately, she is out of the office for a month with a medical situation of her own! Yikes - bad timing! It took me 2 days (even after the positive test) of messages and phone calls with various office staff, trying to explain ME/CFS and how dangerous COVID is for us, before the Nurse Practitioner covering for my doctor finally called in the Paxlovid prescription. I started it on Tuesday. It's a 5-day course of 3 pills taken twice a day, so I finished it Saturday. The only side effect I experienced was a nasty taste in my mouth.

The reason I was so adamant that I start Paxlovid was because COVID is such a strong trigger for ME/CFS, to start it or to worsen it if you already have it. The research so far isn't clear (and of course, isn't focused on those with ME/CFS). This large NIH study on the effects of Paxlovid in preventing long-COVID is very confusing. Their conclusions don't match the details they describe. Right in the abstract, they state that Paxlovid during an acute COVID infection did not reduce the chance of developing long-COVID, but then they say that data showed it did reduce the incidence of cognitive and fatigue symptoms post-COVID (which, of course, is much of what long-COVID and ME/CFS is). 

The first time I had COVID, Paxlovid was not yet widely available, and it took me 6 months to fully recover back to my normal baseline. By taking Paxlovid this time, I am hoping to both reduce the severity of the initial infection and reduce (greatly, I hope) my recovery time. So far, so good. I didn't get the severe chest congestion and cough this time (and I am highly susceptible to bacterial bronchitis, which I want to avoid). Last time, I was severely ill for the first month, and this time, I'm starting to see improvements in the second week. I'm hoping that continues.

What Else Did I Do?

I already take piles of medications and supplements every day, including everything usually recommended to help fight COVID or other viruses. To give myself an extra boost, I increased my dose of nutrients that support the immune system and the herbal antivirals I take every day, and I added in a couple of extra herbal antivirals:

• Doubled vitamin D3 from 5000 IU to 10000 IU daily (5000 IU twice a day)
• Doubled liposomal vitamin C from 1000 mg (1 g) to 2000 mg (2 g) daily (1000 mg twice a day)
• Doubled Zinc Glycinate from 20 mg to 40 mg daily (20 mg twice a day)

Herbal Antivirals:

• Increased olive leaf extract from 750 mg (with 20% oleuropein, the active ingredient) twice a day (1 pill twice a day) to 2250 mg (3 pills) twice a day
• Added L-lysine 1000 mg (2 pills) twice a day
• Added monolaurin 600 mg twice a day
• Adding (next week) inosine 250-500 mg (1/2 pill to 1 pill) a day on weekdays - inosine is an immune modulator that will help to normalize my immune system, and it also has antiviral properties. Dosing is complicated, and I go on and off of it periodically to keep it effective. Details on what it is, how to use it, dosing, and a link to a caplet that can be split in half all at this link.
  

 

Current Status

As of Day 13, I am seeing tiny improvements every day. By Day 11, I tested negative. The sore throat is pretty much gone and most of the hoarseness. Congestion and cough are improving. My energy and stamina are very slowly getting better. I celebrated my 59th birthday Tuesday with my husband and son and was able to sit at the table for dinner (I've been living on the couch!). The past two days, I have begun to walk outside again - very slowly and carefully. Yesterday, I managed two very slow strolls around the cul-de-sac in front of our house. As I often say of everything related to ME/CFS ... baby steps!

We're supposed to be leaving on a two-week vacation this weekend to Michigan's Upper Peninsula. I've been so looking forward to this trip! But, I can see that I'm not up to it. I'll cancel all the campground reservations tomorrow.

When I last had COVID in 2022, I was in much worse shape at this point, almost two weeks in. But I also see from my journal that I was pushing myself to do way too much, even while feeling awful! This time, I have been very, very careful to listen to my body, stay horizontal, and rest as much as I needed. I did not attempt to accomplish anything until the past couple of days. I guess I am trainable!

 

How are you doing?

Have you had COVID? How did it affect you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

2024 Mid-Year Update: Yeast, Diet, No Crashes!

 

While I often mention how I'm doing at the start of blog posts on other topics and in my chronic illness vlogs, I thought it was time for a more comprehensive update. Besides, we just passed the halfway point for the year (!!), so the timing is right. The last time I focused on my own health here on the blog was My 2023 Year in Review back in February, so I'm due for an update!

NOTE: My updates below refer to ratings of how I feel. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" Or you can watch my short video, Chronic Illness: Tracking How I Feel, Symptoms, and Treatments. I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. At the end of each month, I tally up the average of how I felt and also the % of time I spent crashed (a 4 or 5 on my scale). I also rate my exertion each day on a 1 to 5 scale.

 

How I Felt the First 6 Months of This Year

Simply put ... great! It felt like a miracle after my very difficult last three months of 2023, but I've been greatly improved since the start of the year (that's not coincidence--see below for what's making a difference). Most amazing of all: 

I have not had a single crash day in 2024 so far!

For comparison, last November I spent 50% of my time severely crashed, mostly couchbound, and unable to do much of anything. My very few worse days in 2024 have been rated 3--feeling a bit run-down but still able to function. And those were few and far between and always related to yeast overgrowth (see below). 

Even more incredible is that I have been very active so far this year--able to take walks most days, get back into a strengthening routine, go on long (for me - over an hour) hikes with my husband, and even go shopping. I danced at a wedding last month! And with all of that activity, I have not even once worsened from exertion intolerance. It's truly stunning to me.

My rating (1 to 5, with 5 being worst) for the past 6 months has been a steady 2.2. I haven't been that good since 2017. Last year, my average was 2.5 and 2.9 in 2022. 

It's all been good news, and it's been such a joy to be living my life again, able to get together with friends, enjoy my family, and get caught up with work and home.

So, that leaves the big question ... WHY?

Enjoying a 90-minute hike two weeks ago!

Factor #1: Normalizing Thyroid Function

I spent all last year working with my primary care doctor to find the best treatments for my hypothyroidism, after we realized that my thyroid labs were about as low as they could get. It required a lot of trial and error--and patience and persistence--to get new labs every two months, adjust the treatments, and wait to see the effects. But it was well worth the effort. By fall of 2023, my numbers were finally in the normal range for both T3 and T4, I had settled into a stable dose of two medications, and my energy had improved. I then added iodine, which is essential to thyroid function, which helped me to further improve. 

Most surprisingly (to me) was that I lost about 20 pounds last year just due to treating thyroid dysfunction. I made no other changes to diet or exercise (I was actually less active for other reasons explained below)--the weight just slid off me, bringing me back to my pre-illness (22 years ago) weight. What's interesting to me is that I had gained that extra weight gradually, a few pounds a year, even though I was eating a restricted, healthy diet and exercising as much as I was able. That tells me that my thyroid had been dysfunctional for many years, and we missed it due to not testing the right things.

I summed up all the lessons I learned in my post, Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID because thyroid dysfunction is extremely common in our diseases, due to endocrine dysfunction. 

 

Factor #2: Yeast Overgrowth and Diet Changes

As I said, by last fall, my thyroid function was almost normal and I had more energy ... but I was still badly crashed and very sick. The reason why was a mystery to me, and I tried everything that had helped in the past to no avail. For the last three months of the year, I had constant flu-like aches, a sign of immune activation and an indication that my ME/CFS was badly flared up. I had more energy, but I felt awful, and if I did anything at all, I got even worse.

Finally, in mid-December, I saw my functional medicine specialist and told her what was going on. I explained that yeast overgrowth was a chronic problem for me (and many others with ME/CFS, due to our immune dysfunction) but that I was already treating it. She asked me to pull my mask down and stick out my tongue and told me I still had visible thrush in my mouth. I was stunned because I take piles of probiotics every day, prescription antifungals daily, and thought I was eating a strict diet. She questioned me a bit about all of that and said that since nothing else was working, I'd need to get extremely strict with my diet--no carbs at all--in order to starve the yeast.

I was desperate, so I did as she said. She recommended a carnivore diet, which is just as it sounds: meat, fish, eggs (a little high-fat dairy is also OK but I'm dairy-intolerant). Within 10 days of changing my diet, those relentless flu-like aches finally disappeared (just in time for Christmas).

I stuck mostly with carnivore, with just a few bites of cruciferous veggies or avocado each day--what I called 97% carnivore. After three months of that, I transitioned to a more keto diet and have kept that up. For me, that means more veggies but still no grains, no sugars at all, and no starchy vegetables. I explain more about my experience with the carnivore diet in this video. Next week, I hope to post a new video, with brief explanations of the diets that are typically best for those with immune disorders like ME/CFS (paleo, keto, carnivore).

Unfortunately, the yeast overgrowth is still very persistent. I am still taking my maximum dose of prescription antifungals, a whole range of probiotics focused on my own gut testing results with the aim of controlling yeast, and herbals antifungals. And I still have to stick to a very strict diet. I was tired Sunday and Monday this week and realized it was again due to yeast overgrowth. I had "cheated" a bit: two cups of popcorn Saturday evening, a quarter-cup of blueberries Sunday. That's all it takes for the yeast to come back and thrive in me. It is barely kept under control with this diet ... but if I stick to it, it is. That's difficult for me, but I realize it is something I can control, and I'm grateful for that.

Since yeast overgrowth (aka candida) is extremely common in ME/CFS and long-COVID and often overlooked, I wrote a blog post about Treating Yeast Overgrowth/Candida that includes lots of different treatments to try (just updated this year).

That's how my year is going so far!

How are you doing this year?

Have you tried treating thyroid dysfunction or yeast overgrowth? 

Have any other treatments helped you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

Movie Monday: A Quiet Place: Day One

On the 4th of July, with temperatures in the high 90's here, we escaped to a movie theater to see the third movie in John Krasinski's Quiet Place series, an origin story called A Quiet Place: Day One. First, let's get some misconceptions out of the way. I don't like horror movies. Although these movies are about an invasion of gruesome aliens that hunt by sound, like its predecessors, this movie is a quiet (very quiet!) character study, with plenty of emotional depth, insights about humanity, and heart. And, yes, there are some gross and very dangerous aliens, too. Check out my earlier reviews of A Quiet Place and A Quiet Place Part II (I just reread them both and rewatched their trailers, and I would definitely watch the movies again!). Although John Krasinski helped to write this third movie, he and Emily Blunt and their film family do not appear in it, and he doesn't direct it. It's a new take on the setting and premise of the series.

The movie opens in a quiet nursing home environment, during a group therapy session. Sam, played by Lupita Nyong'o, is younger than many of the other residents and somewhat flip and disdainful of the group session. We soon find out that this is hospice care and Sam and the other residents are dying. While Sam seems brash and uncaring at times, she has a cat named Frodo that she clearly loves and is attached to, and it's obvious that her coolness is merely a shield to protect her. Reuben, played by Alex Wolff, is a nurse at the facility who leads the group session and convinces Sam to come with the group on an outing to see a show in the city by agreeing to her plea for real New York pizza afterward. She figures this will be her last trip to the city. Their bus takes them to the city, but the show has barely started when the alien invasion hits. Everyone runs into the street to see the fireballs fall from the sky and the gruesome aliens emerge. It soon becomes clear that the aliens hunt by sound, and people quickly learn to be quiet in order to avoid them. Announcements tell people to head south to South Street Seaport to board boats, but Sam has her own private mission and moves against the flow of people, heading north and clinging tightly to Frodo. She meets a British man named Eric, played by Joseph Quinn, who is also alone in the city, on a business trip, with no family or friends nearby. The two of them (plus Frodo) struggle to stay safe from the aliens, as Sam single-mindedly pursues her mission.

Michael Sarnoski helped to write and directd the movie and said in an interview that John Krasinski gave him almost total freedom to come up with a unique take on this apocalyptic world. What he came up with is brilliant because Sam has a very unique perspective during this disaster: she knows she is already dying (soon). And the focus here is squarely on the characters, especially Sam and Eric, as they are bonded by their terrifying experiences and confide in each other, as people tend to do in this kind of intense situation. The actors are all excellent, but Lupita Nyong'o's performance is especially good. It is a thriller, yes, with plenty of fast-paced scenes, but it also has a laser-focus on these two people, with plenty of emotional depth and heart. I cried at the end. For scaredy cats like me, while technically alien invasion movies are usually classified as horror, this doesn't feel like a typical horror movie, and my husband and I both noticed that there is no gore and the violence mostly happens off-screen (though those aliens are pretty disgusting up close). It's a unique movie experience, like the first two movies were, though with its own new twist on the theme. We both enjoyed it very much.

A Quiet Place: Day One is currently in theaters, which is the ideal way to see all three movies, if you can. It can also be purchased on YouTube for $25 or pre-ordered on Amazon for the same price. The first two movies are available on Amazon, Paramount+ and other services.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.