Wednesday, October 14, 2020

The October Slide: ME/CFS and Infectious Triggers


Some with ME/CFS call it The October Slide. Others refer to it as a seasonal downturn. Many patients don't call it anything but wonder why on earth they feel so awful during fall and winter. My son and I used to experience this, too, every year, spending endless weeks--or months--with both of us crashed and unable to get up off the couches and recliners. Although this is now rare for us, I re-experienced this phenomenon this past week, when I abruptly went into a severe relapse that kept me home and lying down for a week (I'm not back to my normal baseline yet but am starting to feel better).

The good news is that there are medical, scientific reasons for this annual fall/winter downturn, and it can be treated and eliminated. As I said, my son and I used to spend much of each fall and winter badly crashed, and it is now a rare occurrence. We also used to both get bacterial bronchitis 4-5 times a year (often in fall and winter) that knocked us out completely and required antibiotics (sometimes multiple rounds). These days, we may each get bronchitis once every two years or so, and we usually catch it early, treat it, and only spend a few days crashed from it. You can say good-bye to the October Slide and the fall/winter crashes, too. Here's how:

What's Going On

ME/CFS is, at its heart, an immune disorder. It doesn't fall neatly into the categories of immune-deficient or autoimmune, though, as most immune disorders do. Instead, we have characteristics of each, with parts of our immune systems over-reactive and other parts under-active. This blog post, Immune System Abnormalities in ME/CFS, explains in simple terms what's going on behind the scenes that contributes directly to our seasonal downturn.

The common worsening and frequent crashes most of us experience in fall and winter are mainly due to exposure to infectious agents. While, as explained in the post linked above, our immune dysfunction means that we rarely "catch" colds, flus, and other viruses, just being exposed to them can cause our already-overactive immune system to go further into overdrive. The crash symptoms we experience in fall and winter are usually symptoms of our immune systems getting seriously over-stimulated: things like flu-like aches, sore throat, swollen glands, worse fatigue/exhaustion/lack of energy, and sometimes a fever or feeling feverish even with a normal temperature. Alternatively, when someone catches a cold or flu, they will get the classic symptoms of it, which might include severe congestion, cough, high fever, etc. In the example of my bad crash this past week, which was almost definitely from exposure to some infectious agent, for a couple of days I had a bit of a runny nose, a tiny bit of mucus in my chest in the morning (again, I am prone to bronchitis), and maybe a very mild fever on a couple of days. But my main symptoms have been severe head-to-toe achiness, complete lack of energy and extreme exhaustion, and a mild sore throat--all signs of immune activation.

What was I exposed to last week? I have no idea! Both of my sons were out of town and returned last Sunday, so they had certainly been exposed to stuff. I was in the grocery store the week before (with a mask, of course). That's the point about this time of year: there are more colds, flus, and other infections floating around, with more people indoors where the germs are easier to get exposed to. I'm guessing it was a simple cold germ since flu season isn't really here yet, though of course in 2020, we are all concerned about coronavirus, too. There are dozens of viruses floating around in the air at any time.

 

What Can You Do?

There are two important steps to stop this annual seasonal downturn: 

  1. Improve Your Immune Function
  2. Treat When you've Been Exposed to an Infectious Agent

Improving immune function in ME/CFS is tricky because it's a mixed bag, so the treatments used for immune deficiency or for autoimmune diseases won't work for us. Instead, we need to focus on what's known as immune modulators, which will help to normalize the immune system (rather than boosting it or suppressing it). We have found three treatments which help to do this: low-dose naltrexone, inosine, and glutathione. These are all inexpensive, and the last two don't even require a doctor (though it's always good to discuss any new treatments with your doctor(s)).

This blog post, Treating Immune System Dysfunction in ME/CFS, covers all three of those treatments and provides more detail on the immune dysfunction that is common in ME/CFS.

Using those three treatments put a stop to the annual fall/winter crashes for both my son and I and to our frequent bouts of bronchitis (which occur because our immune systems under-react to bacterial infections). We both no longer experience a seasonal downturn nor the severe and long-lasting crashes that come from exposure to infectious agents in fall and winter. 

But, of course, I did crash from a likely infectious trigger last week, so it can still happen on rare occasions; we just don't spend all winter battling it anymore. And when it does happen, it only takes a day or so for me to recognize that I was probably exposed to some infection (because of the severity of the crash; with these and other treatments, I no longer crash badly from over-exertion). When that happens, I listen to my body and rest as much as I need to (I have been pretty much couch-bound the past week), but I also increase my dose of herbal antivirals/antibacterials. 

My son and I both take a range of herbal antivirals/antibacterials/antifiungals every day in our daily meds boxes, including Emulsified Oil of Oregano (ADP), Olive Leaf Extract, Grapefruit Seed Extract, and Monolaurin. But on weeks like this, when I've been exposed to something that's made me crash (or if I know someone near me has a cold, flu, etc.), then I add extras. This past week, I more than doubled my dose of Olive Leaf Extract (from two every other day to four every day), and I have been making my son and husband take it, too! Yes, these work for healthy people without ME/CFS like my husband, too. After a week, my mild viral symptoms are long gone, I am starting to feel better, my husband hasn't caught anything, and my son hasn't crashed.

All of this is further explained in the post, Treating Virally-Induced Crashes in ME/CFS

 

You do NOT have to accept and live with the annual worsening and extra crashes every fall and winter! These treatments will not only help to prevent that seasonal slide but will also help to improve all of your ME/CFS symptoms, including exercise intolerance. Since immune dysfunction is at the heart of our disease, improving and normalizing your immune system will help to make everything better. It's not a cure--that doesn't exist yet--but these are improvements that can vastly improve your ability to function and your quality of life.

Have a wonderful fall and winter!

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.


. . .

Monday, October 12, 2020

Movie Monday: The Vast of Night

After a long sick week for me, I was in the mood for a movie last night, so my husband and I watched The Vast of Night, a new original movie from Amazon. This 1950's style sci fi drama is original, suspenseful, and a lot of fun.

The film has a very Twilight Zone feel to it.  In fact, the entire movie is framed as if it were an episode of a black-and-white TV show called Paradox Theater, which is clearly a send-up of the classic twisty show. Then, the audience is brought into the show (and the scene turns to real-life color), and the story unfolds in the small town of Cayuga, New Mexico. Sixteen-year-old Fay, played by Sierra McCormick, is a cute 50's teen in cat's eye glasses, a full skirt, and saddle shoes who talks a mile a minute. She's excited to show Everett, a slightly older guy played by Jake Horowitz, her brand-new tape recorder that she bought based on his advice. As they walk from the high school, where the rest of the town is gathering for a basketball game, Everett, who works as a DJ at the radio station, shows Fay how to use the device by encouraging her to talk about the science articles she's read recently. Then, Fay goes to work as the town's evening switchboard operator, and Everett heads to the tiny radio station to broadcast his nightly show. Fay starts to notice some odd happenings: the radio show cutting out, phone calls getting dropped for no reason, and an odd noise she's never heard before on one line. She calls Everett, who shares her love of science, and plays the strange sound for him. Fay runs over to the radio station (she does a lot of running in this movie!) and together, the two of them catch the strange sound on Everett's recording equipment, play it on air, take a call from a mysterious caller named Billy, and rush to visit an elderly woman named Mabel. Both Billy and Mabel tell strange stories about this noise, which they've both heard before, and Fay and Everett run around the empty town, trying to solve the mystery.

This movie is so much fun! Any Twilight Zone fan (like me) will feel right at home, and the story is filled with tension and suspense. It's not super fast-paced at first, but it feels just right for the 50's setting. The two main actors (who are on-screen most of the time) are both excellent in their roles, completely inhabiting their young, curious characters. A lot has been said by professional film critics about the production values of this movie and the unique ways in which it was shot. I'm no expert, so I can't comment on that, but as a viewer, I was fully immersed in the story and very much enjoyed it. And did I mention it's funny, too? To top it off, the ending felt perfect to me.

The Vast of Night is an Amazon original movie, so it is available exclusively on Amazon Prime.

Tuesday, October 06, 2020

TV Tuesday: High Fidelity

My "alone time" for TV watching is pretty minimal these days, with a full house, but I like to find a good half-hour show that I can squeeze into my rare solitude for a little downtime! My latest pick was High Fidelity, a Hulu show based on the 2000 movie starring John Cusack (and on the original Nick Hornsby novel), with a modern twist.

In a gender switch, Zoe Kravitz (daughter of musician Lenny Kravitza and actress Lisa Bonet) stars as Rob, the owner of a record store who loves to make Top 5 lists. Here, the record store is located in so-cool and of-the-moment Brooklyn. Rob's best friends and record store colleagues are Simon (played by David H. Holmes), a gay, self-conscious guy, and Cherise (played by Da'Vine Joy Randolph), an exuberant, sharp-talking woman who dreams of being the lead singer in a band. As in the movie (and novel), the show is structured around Rob recounting her Top 5 Heartbreaks of All Time, as she tries to figure out why none of her relationships work and why she is still alone in her 30's. Mac, played by Kingsley Ben-Adir, is the handsome British guy who was Rob's latest heartbreak. He's just moved back from London, so the love and the break-up are suddenly front and center for Rob again. Meanwhile, Clyde, played by Jake Lacy, is a new man in Rob's life (sort of). The 10 episodes not only go through Rob's heartbreak list but also delve into the lives of her friends and lovers (past and present). Through it all, music is a constant thread, with great, unusual background music playing in the record store and the Top 5 lists of the three record store employees.

Although this show is centered on heartbreak, it's a whole lot of fun. The music provides a great backdrop to the story, and there is plenty of humor as well. Kravitz and her co-stars do a wonderful job of inhabiting their quirky characters so that you come to care for them and root for them, as they all grow and evolve. Rob is kind of a mess here, but as she works through her past heartbreaks, I wanted her to come out of it healthier and happier. I loved the music and the Top 5 lists and the witty banter among the friends. The writing is excellent! It's a great show for some fun and escape, which was just what I was looking for.

High Fidelity is a Hulu original, so it is available only on Hulu.

 

Thursday, October 01, 2020

News From Our House - Oct. 1, 2020 - Taking Time Off


Hi, all! My husband and I are just back from a day trip to the beach for a late anniversary celebration (more on that below), a lovely little getaway. I have still not been feeling great, with far too many bad crash days, but we have enjoyed some good times in the past couple of weeks, too. 

Antivirals Update

I am still taking antivirals for reactivated HHV-6 (as explained in this post), and still struggling, though making a little progress. I had a lot of bad days in September, which was frustrating because it's my favorite month and the weather was finally better. I have worked up to a full dose of Famvir (famciclovir), which is one pill per day, after four months of gradually working up. Right from the start, I have had a pretty severe Herx reaction (a worsening that occurs when treating certain infections). 

My stamina is far, far below where it normally is. With treatments over the past 15 years, I was able to exercise again and had worked up (very gradually and only after treating exercise intolerance) to being able to walk most days, working out with weights (carefully, lying on the ground) three or four days a week, and being able to manage walking for up to 60-90 minutes on a good day! Recently, I have been in such bad shape that even just a slow 15-minute walk could cause a crash. That's a big downturn for me. 

Now that I am up to a full dose of antivirals, I am hoping to start seeing some improvements. I have walked a bit during some "days off" with my husband this past week (see below) with only minor repercussions, so I am hoping things are getting better. This has been going on since mid-March, seven months now, so it's been tough to deal with being incapacitated again after so many years of managing better.


Insurance Woes

I won't get into all the details of the whole, long, nasty story, but our son turned 26 this summer, so we had to apply to keep him on our health insurance. We'd been told by other parents that it was easy to do, so we weren't worried. We sent in our application ... and they rejected it. They said they agreed he was disabled but they thought he could support himself (what??). So, I spent a full week scrambling to collect doctor's letters, copy lab results, and write a 4-page letter from us, all to say that he can not work full-time right now and needs to stay on our insurance. Our appeal was approved and they overturned their first decision - wonderful, right? Except that was September 1, and it has taken a full month of never-ending phone calls to get them to correct their system so that it showed he was covered! We kept going back to the pharmacy to refill meds and being told he didn't have coverage. All just to say that it's been a difficult and very stressful process. And, yes, that was the short version!

U.S. parents, learn from us: If you have a disabled 25-year-old, get your application to keep him/her on your health insurance in as early as possible, to leave time for the bureaucratic mess that may follow! Ask your carrier for the forms.


Taking Time OFF

My husband has had his hands full since the pandemic began, between me not feeling well (and not being able to do much) and caring for his 95-year-old father and working full-time. Normally, we enjoy traveling with our pop-up camper--nice, slow-paced, relaxing road trips. This year, we haven't been able to travel at all, for all of these reasons: the pandemic, my condition, and not being able to leave my FIL (before we hired help, my husband had to go check on him two or three times a day!). But we do have help now (in-home care services who send someone to spend 3 hours with him on weekdays), so I was determined to somehow fit in some much-needed downtime for us.

Reading at our campsite

Last week, we took a little day-and-a-half camping trip to a nearby state park mid-week (to avoid the crowds and to go when we had extra help for dad). We left Tuesday evening and came back by lunchtime Thursday, and we did get some emergency calls on our only full day off (a broken tooth!). BUT, we managed to grab some very peaceful quiet time for ourselves outdoors.

Short walk to a secluded beach
 

It was a very relaxing trip. We slept in our camper, read a lot, took a short walk down to a nearby isolated beach, had a campfire, and just enjoyed the tranquility. The campground was almost empty, and being outdoors just immediately fills me with a sense of calm. Falling asleep with all our windows unzipped, listening to the sounds of the crickets and the water lapping against the rocks, was especially lovely.

Waking to the sounds and sights of nature!
 

We had this amazing waterfront campsite and thoroughly enjoyed the downtime and perfect weather with just the two of us.

Magnificent water view from our campsite

Today, we enjoyed another mini getaway. Our 31st anniversary was yesterday, so we got some take-out from a favorite restaurant locally last night, and today after breakfast, we drove to the beach (about 2 hours away). It was 4 hours of driving for just 3 hours there (we had to leave in time for my afternoon nap and to get home in time to check on his dad), but it was a lot of fun.

A short trip to the beach: I love the ocean!
 

We walked on the beach, which is my happy place! I love the ocean--the sound of the waves, the smell of the salt air, the horizon separating blue sea and blue sky. It was lovely and relaxing. Afterward, we had an outdoor lunch at a waterfront restaurant, took a very quick walk through town and returned home. Even the drive was nice since we have been missing our road trips!

Celebrating our anniversary today at the beach
 

Just these two tiny trips have really helped my emotional well-being. Between my bad crash and everything else going on, I was getting kind of down at times and really missing our camping trips and travel. Just doing something outside of your normal routine for an hour or two can really make a difference and provide an emotional lift. I wrote more about the lift that nature can provide in Weekly Inspiration: Outdoor Living (with more photos from our camping trip).


What I'm Reading and Watching

I am currently enjoying an annual fall reading challenge I do every year, #RIP XV, where you just read darker stuff in September and October: things like mystery, suspense, thriller, paranormal, etc. In September, I read a true crime book, The Feather Thief: Beauty, Obsession, and the Natural History Heist of the Century by Kirk Wallace Johnson. I read it for my book group (which just restarted meeting via Zoom), and like many book group choices, I probably wouldn't have chosen it myself but am so glad I read it! It's a fascinating, truth-is-stranger-than-fiction story of a young musician who broke into the British Natural History Museum and got away with priceless collections of birds. Everyone in our group loved it, and we had a lot to talk about! You can read my review at the link.



Now, I am immersed in a quiet suspense novel, The Lock Artist by Steve Hamilton, which won the Edgar Award for Best Novel in 2011. I gave it to my husband, and now I am enjoying it (the best kind of gift!). It's about a young man who can't speak and is an expert safecracker, and the story of how both of those things came about. So far, it's been engrossing and suspenseful, though it is a quiet kind of thriller, with no gore. I'm really enjoying it.


We enjoyed a movie this past weekend, Enola Holmes, which is new on Netflix. It's about Sherlock Holmes' much-younger sister, who shows some of his same cunning and courage when she runs away to London on h

er own to find her missing mother. Millie Bobby Brown (of Stranger Things fame) plays Enola, and she is wonderful in the role! It's a fun, light movie that we both enjoyed; you can read my full review and watch the trailer at the link.

 

 

 

How are YOU doing this week?
And what are you reading, watching, and enjoying?

Leave a comment below (most are coming through now), or you can also comment or chat with me on Twitter or at my Facebook page. I will post the link to this blog post in both places.