I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Glutathione is a naturally-occurring compound in the body that is absolutely essential for energy production, immune function, detox, and more. As you might have guessed, people with ME/CFS need lots of it but don't make enough of it. Increasing glutathione has had obvious positive effects for us, and how you get glutathione (or help your body make more) is important, since some supplements are mostly a waste of money.
I first wrote this post in 2017 and had added new notes to it and brief updates several times over the years, as I got new information or we tried new approaches. This time, I edited the whole post, fixed any broken links, checked new information, and made sure it was all up-to-date.
If glutathione is not something you have looked into before or if you'd like to know more, I hope you'll find the newly updated post helpful.
The trend of making excellent television adaptations from best-selling books continues, with Silo from Apple TV, based on the outstanding Silo trilogy by author Hugh Howey, including Wool, Shift, and Dust, a favorite series of mine and my husband.
In the first episode, we see that the world depicted in Silo
all takes place underground, in a giant silo 200 stories deep. In the
lowest floors, Mechanical keeps everything running, with enormous
generators and other machines to make the space livable. In this
society, every person has a purpose, and birth rates are carefully
regulated so that the silo can continue to meet the needs of all of its
citizens. Some floors contain huge farms that grow the food for everyone
living there; others have schools or clothing looms or medical
facilities. Sheriff Holsten's (played by David Oyelowo) office is way up
on the top floor. The outside air is toxic, so giant screens in each
regional cafeteria provide a depressing look at the outside world, with
its gray skies and dead trees. As the first episode opens, Sheriff
Holsten is being "sent out to clean," the silo's horrifying way of
dealing with rebellion. Both Deputy Marnes, played by Will Patton, and
Mayor Jahns, played by Geraldine James, are grieving this unexpected
turn of events. Sheriff Holsten is a good man, but he has said he wants
to go outside, and the punishment for that is banishment. As with
everyone sent out before him including his wife, he first cleans the
camera lenses for the people still inside and then collapses in a heap
after just a few steps away from the silo. Much to everyone's shock,
Holsten has named Juliette Nichols, played by Rebecca Ferguson, an
unknown but talented mechanic from the down deep, to be his replacement.
Underlying all of this are small glimpses, by both Holston and
Juliette, that perhaps everything they've been told about the silo is
not strictly true.
And those are the mysteries at the heart of
this show (and its originating trilogy): how did the silo come to be,
what happened to the outside world, and why are things inside the silo
(by necessity, run under strict rules) the way they are? In flashbacks,
we see first Holsten and then later in the present, Juliette, begin to
dig into these questions that are dangerous to even think about. The
sheriff's department is also kept busy investigating an ever-increasing
spate of violence and unusual deaths that the Justice department (some
scary guys on a middle floor) would like to sweep under the rug. Through
all of that, we see the fascinating inner workings of this unique
world: children playing, festivals and celebrations, births and
funerals, and all the minutiae of daily life, lived within this limited
space. As with the novels, this story is filled with suspense and lots
of unexpected twists, but it also focuses in on humanity, characters,
and relationships. So far (we are five episodes in), they've done a
remarkable job of visually recreating this very unusual setting, and the
acting and writing are excellent. This unique, gripping science fiction
drama has already been approved for a second season, and we are
thoroughly enjoying season one.
Silo is an Apple TV original show.
And if you have not yet read the trilogy, it's maybe the best series I have ever read! Start with Wool.
Last week, we went to the Catskills region of New York State for relaxed 5-day vacation. It's about a 4-hour drive from our home, and we brought our pop-up camper (home away from home). It's always so rejuvenating to spend time surrounded by the beauty of nature, but we also enjoyed some time in nearby small towns.
Here's a travel vlog that I put together, with lots of video clips and photos, so you can come along on our trip with us. You can watch it on YouTube or I'll include it here:
Scientific studies show that even looking at pictures of nature can improve your physical and mental health, so I hope you enjoy that!
Toward the end of the video, I included a short addendum after we got back home about WHY I felt well enough to manage this vacation. The day before we left, I got my latest thyroid lab results back, showing that everything was still low, in spite of two different thyroid meds and a dose increase a few months ago. My wonderful primary care physician e-mailed me on the weekend and agreed I could try going up more on the dose of one of my meds. It worked! Within 48 hours, I was feeling better, with more energy and stamina, and I was able to do more without crashing. Just in time!
I hope you enjoy coming along with us on our relaxing trip.
Are you able to travel at all, even for a weekend away?
It is estimated that 20% of patients with Lyme disease (even when treated early) don't get rid of the infection and instead develop chronic symptoms (often ME/CFS) and potentially permanent neurological or cardiac damage. My son and I both fall into this category: he got Lyme in 2007, and I got it in 2008 (in addition to the ME/CFS we already had), and we both require continuous treatment even now to keep symptoms and damage at bay. In his case, he also had co-infections (bartonella and babesia) that went undiagnosed for over three years, making it even more difficult to eradicate the Lyme disease. Other people may have Lyme and/or other tick infections for years, even decades, without being accurately diagnosed or treated and are now stuck with it as a chronic condition.
New research conducted at Mt. Sinai in New York has identified 35 genes that are highly expressed in people with long-term Lyme disease. These exciting new findings could lead to diagnostic biomarkers for long-term Lyme, which is difficult to diagnose and even not believed in by some doctors. It could also potentially lead to new treatments, based on specific RNA levels in the body.
This study was conducted using blood samples from 152 patients with long-term Lyme to measure their immune response and compared to data from 72 patients with early Lyme disease and 44 uninfected controls. Researchers found a unique inflammatory gene signature that differentiated those with chronic Lyme. The researchers plan to repeat the study with additional patients and apply this same new technology to other difficult-to-diagnose diseases (note that these same technologies are currently in use in some ME/CFS studies funded by Open Medicine Foundation).
My son and his girlfriend were visiting Memorial Day weekend, and we
were looking for a movie that all four of us would enjoy. We settled on Missing, an exciting thriller where a teen girl is searching for her missing mother.
Teen
June, played by Storm Reid, lives alone with her mother ever since her
father, James, died. Her mom, Grace, played by Nia Long, can be a bit
over-protective, but it's clear the mother and daughter have a close
relationship. Now, Grace is headed off to Columbia on vacation with her
boyfriend, Kevin (played by Ken Leung), leaving June home alone. Grace's
best friend, Heather, played by Amy Landecker, has promised to check in
on June while Grace is away. Predictably, as soon as Grace and Kevin
leave, June kicks off a wild week of parties with her friends, including
her best friend Veena, played by Megan Suri. When the week is over,
June heads to LAX to pick up her mom and Kevin ... but they don't show
up. June begins to investigate from her phone and laptop in LA and gets
more and more upset. It seems that no one has seen the couple since they
walked out of their hotel room the day before, leaving all their stuff
behind. June contacts the FBI, but they explain they don't have
jurisdiction in Columbia. She's becoming more panicked and scared the
more she discovers. Looking at social media posts, hacking Kevin's
e-mail, and tapping into public video feeds from Columbia, a terrifying
story begins to emerge, and the FBI and LA police do finally get
involved. But no one cares as much as June, and she hires a local
Columbian named Javier, played by Joaquim de Almedia, through Taskrabbit
to follow-up on the ground for her. June races against time to find her
mother.
The tension in this excellent movie builds quickly and
never lets up. Much of the movie takes place online, as seen on June's
laptop and phone, which might sound awkward but is very well done,
creating a compelling story that feels like it is happening now,
as you watch it unfold. The suspense is sustained throughout the film,
with lots and lot of unexpected twists. I think we suspected every
character except June at one point or another. The ending truly
surprised us, which is quite a feat because my husband and son are both great
at guessing endings and spoiling movies! The actors and writing here
are also top-notch. While searching for a movie to watch that night, we
thought that Searching sounded like a similar plot and approach as Missing, and it turns out that was intentional. In Searching, a father uses the digital world to search for a missing daughter, and the shared co-writers and producers of both films bill Missing as a "spiritual sequel" to Searching. I guess we'll have to watch that one next because all four of us enjoyed Missing very much.
Missing is currently showing on Netflix and is available to rent on other streaming services.
