Monday, October 07, 2019

Movie Monday: The Crimes of Grindelwald

This weekend, we ended our all-day family day with a movie for me, my husband, and our oldest son (25): Fantastic Beasts: The Crimes of Grindelwald, the sequel to Fantastic Beasts and Where to Find Them, which the three of us enjoyed watching last year. Our reactions to this second movie, spun-off from the Harry Potter series, were mixed, though my son and I both ended up enjoying it.

This sequel picks up in 1927, after (a few years, I think?) the events of the first movie. Grindelwald (played by Johnny Depp), a wizard criminal who was imprisoned in the U.S. at the end of the first movie, is being transferred to Europe to stand trial there. Despite all the magical security measures put in place, Grindelwald manages to escape. Meanwhile, the Ministry of Magic in London wants to locate Credence Barebone, another character from the first movie who is a wizard brought up by a non-magical adopted family. Newt Scamander, played again by Eddie Redmayne, won't work with the Ministry to find Barebone, because they want to send a bounty hunter with him. However, when his old Hogwarts professor, Albus Dumbledore (played by Jude Law), asks him to go to Paris to find Barebone in order to save him from both the Ministry and Grindelwald, Newt agrees. Newt's American friends from the first movie, Jacob Kowalski and Queenie Goldstein, are also featured again in this movie and are still very much in love, though not allowed to marry since legal marriage is not allowed between wizards and Muggles (non-magical people). At the same time in Paris, an old school friend of Newt's named Leta Lestrange (played by Zoe Kravitz), who is now engaged to Newt's brother, is also looking for Credence Barebone, on the suspicion that he might possibly be her long-lost, long-thought-dead brother. Grindelwald's evil plan is for pureblood wizards to band together and take control of the entire world, wizards and non-wizards alike. All of these people and situations come together in Paris, along with a fun collection of Newt's magical creatures, ending in a climactic clash between good and evil.

Confused? So were we! It is a very complicated plot with a lot of different characters to keep track of. It would probably help if you watched this sequel soon after watching the first movie, but it's been almost a year for us. We enjoyed seeing some links to the Harry Potter books/movies, which take place about 80 years later, with familiar characters like Dumbledore, here as a young man, and well-known wizarding family names like Lestrange popping up here and there, as well as scenes of familiar Hogwarts. Law does a great job as a young Dumbledore, Depp is spooky as the criminal Grindelwald, and Redmayne is as charming as ever as kind, unassuming Newt. This second movie is far darker than the first, with much less fun whimsy and more evil. All three of us felt it was far too complex and difficult to keep us with, especially the first half of the movie. My son and I got into it in the second half, with lots of pressing pause to confirm what was going on and who was who, but my husband really didn't enjoy it. This movie is probably best for major fans of the Harry Potter universe and/or those who've watched the first Fantastic Beasts movie recently. There was clearly a set-up for another sequel, with an upcoming battle between Dumbledore and Grindelwald (that my son said was mentioned in the Harry Potter books as a major point of wizarding history). I'm not sure if we'll watch it or not. Perhaps if it comes out soon, while we still remember all the complicated details of this one!
NOTE: IMDB lists not only a Fantastic Beasts 3 but also a #4 and #5! The next sequel, #3, is due out in 2021.

Fantastic Beasts: The Crimes of Grindelwald is available on streaming and on DVD. It looks like HBO owns the rights currently, so it is included with HBO subscriptions, available to buy on streaming through Amazon for $14.99 or on DVD (the way we watched it). The first movie, Fantastic Beasts and Where to Find Them is available for streaming on Amazon for just $1.99 or on DVD. Definitely watch them both together, to avoid getting too confused!

I have to admit, the trailer is pretty enticing:

Sunday, October 06, 2019

Weekly Inspiration: Slow Down and Enjoy Time Off

Today's post is about how to slow down, relax, and occasionally take time off from the fast pace of modern life. Yesterday, all of our immediate family - my husband, two sons, father-in-law, and me - spent the entire day together, relaxed and just enjoying each other's company. It struck me how rare that is now, not only to get both of my sons home at the same time (they are in their early 20's), but to be able to spend an entire day without the pressures of getting things done and responding to the online world. In the morning, we made our annual trip to a farmer's market where we go every October to pick out pumpkins and indulge in hot cider and freshly-made donuts, rested/napped in the afternoon, and then had dinner, cake, and presents for my husband's birthday. Ironically, we had to do this all in one day because there was not a single day the rest of the month when we could all get together...because we are so busy!

All 5 of us at home together - a rare treat!
Now, you might be thinking, "Slow down? ha! This illness slowed me down years ago. I have no choice." For me, that's the real irony. In spite of the fact that I need to spend at least 12 hours in bed sleeping (on a good day), I rarely get up before 8 am, and I need to be lying down by 7:30 pm, my life still feels very rushed and overly busy. For starters, I have to squeeze all of my productive time and to-do's into a much smaller period of time than most people. Even more pressure comes from the online world these days: keeping up with social media, replying to e-mails, participating in online support groups, and more. A day like yesterday when we are all together and just "hanging out" is so rare that it reminded me of Christmas Day, a once-a-year phenomenon!

Here is one of my favorite TED Talks: In Praise of Slowness by Carl Honore. In spite of the fact that this talk is from 2005 (he mentions Blackberries instead of smart phones!), it's message is even more appropriate and powerful today, especially the parts about his time with his son:

I would really love to hear Carl speak again TODAY, in light of how much faster the digital world - and hence, our entire world - has become.

I have a hard time slowing down and especially, taking time off to relax. I wrote about this difficulty and some great ideas for encouraging free time in my ProHealth article, The Importance of Play. Even if you are more limited than I am and mostly housebound, it is still easy to fall into the trap of living a fast-paced life, where your brain is constantly jumping from one thing to the next, even if (or maybe especially if) most of your "activity" is online. Those connections we make with each other in the virtual world are so important, but we also need to take time out, away from the electronic devices, to just relax and enjoy our families, friends, or some alone time.

How will you take time out today and slow down?

Friday, September 27, 2019

Webinar: Advances in ME/CFS Research and Clinical Care

Solve ME/CFS Initiative has an awesome on-going series of webinars on a wide range of topics for ME/CFS patients and their doctors, and the one scheduled for next week sounds especially good:

Dr. Kenneth Friedman will be hosting a webinar on Thursday, October 3, 2019, on Advances in ME/CFS Research and Clinical Care, starting at 10 am Pacific Time and 1 pm Eastern Time. You can read all the details about the webinar here. And you can register for the webinar here.

I'd really like to catch this one, but they are always scheduled during my nap time! Luckily, Solve ME/CFS posts videos of past webinars on this page - topics include genetics, brain inflammation, school accommodations, the disability process, and more. What a wealth of knowledge! That same link also describes upcoming webinars, so you can plan ahead.

I'll have to watch this one after it airs, but maybe you can catch it live - sign up today! It's free and sounds like it will be very informative.

Tuesday, September 24, 2019

TV Tuesday: Fall 2019 TV Preview

Yay! It's officially fall! That means cooler weather (thank goodness), jeans and sweatshirts, beautiful foliage, and...a new TV season! Even though streaming has made new shows (and old favorites) available all year round now, my husband and I still enjoy a bunch of shows on network TV (watched On Demand, according to our schedule) as well as on streaming. This is the time of year when the networks begin to premier their new shows, being back more seasons of old favorites, and yes, the streaming services do, too.

Network Old Favorites Returning - 
First, some of our old favorites on network TV that we are looking forward to this fall, in order of release date (my reviews, with trailers, are at the links):

The Resident - We really like the cast of this medical show, though in the first season, it seemed like all of the older doctors were evil...not just bad, but pure evil. They've tamped that down a bit now (only one of the attendings turned out to be truly evil), we enjoyed season 2, and we are looking forward to season 3, starting September 24 (tonight!).

New Amsterdam - Yes, another medical show! Somehow we always get hooked on them. This one just started last year, with Ryan Eggold (an actor we liked on The Blacklist) as Medical Director Dr. Max Goodman, who is battling cancer while trying to fight against the medical bureaucracy and put patients first. The entire cast is great, and it's nice to see the good guys win. It also starts tonight, September 24.

Grey's Anatomy - Why do all the medical shows start the same week?? No idea, but Grey's is, of course, the gold standard in this category. My husband says he is starting to get sick of it, but I'm not! Never. And he's a good enough sport to continue watching it with me. I still love it and look forward to it every week. It's 16th (count 'em!) season kicks also kicks off this week, on its usual night, Thursday, September 26.

The Rookie - This newcomer turned out to be one of our favorite shows last year! Nathan Fillion stars as John Nolan, the oldest rookie cop in LAPD's newest class. As always, he brings his considerable charms to this role, but what we like best is the way this action-packed, suspenseful police show also blends human stories and humor into its mix. Its second season starts next Sunday, September 29, and we will be watching it On Demand Monday!

The Blacklist - We have stuck with this show through six seasons of twists and turns, main characters' deaths, and more. This unique show has an elite FBI black ops group working with renowned (and Most Wanted) criminal Raymond Reddington, played masterfully by James Spader (he's come a long way from the pirate outfit in Fast Times at Ridgemont High). We still enjoy this fast-paced thriller, and its seventh season begins on Friday. October 4.

Madam Secretary - I think this is another one my husband is getting a little bit tired of, but he keeps watching it with me...and I still love it! Tea Leoni is fantastic as Secretary of State Elizabeth McCord, with Tim Daly by her side as her husband, religious expert, and sometime CIA employee. Each episode, Elizabeth solves some unsolvable and complex international problem with wisdom and compassion. Ahhh...if only she and Keifer Sutherland's President Tom Kirkman on Designated Survivor were our leaders in real life! A girl can dream. Its sixth season premiers on Sunday, October 6.

I will also hopefully have the time to watch This Is Us and A Million Little Things on my own...though my TV alone time is severely limited these days.

New Network Shows I Want to Try -

Bluff City Law - This new legal show on NBC premiered last night on September 23 (my husband is away, so I have to wait!). Jimmy Smits returns to the law (he starred on L.A. Law for 6 years) in this father-daughter legal practice.

All Rise - Another legal show, premiering on the same day. Seriously, what is up with the confluence of medical and legal show premiers?? Anyway, this one looks intriguing, about a newly appointed judge who wants to make a difference. I'm a bit more interested in this one than the previous one, but we'll see. Also started Monday, September 23.

Emergence - Whew. For a while, I didn't see any new sci fi or paranormal thriller on the docket for this season, but this one looks right up our alley! I can already see similarities to The Crossing and Manifest (which returns for a second season this winter). It premiers tonight, September 24.

Stumptown - The new detective show starring Cobie Smulders (of How I Met Your Mother fame) as a P.I. has been described as similar to the classic The Rockford Files. I like the lead actress and loved the trailer - action, suspense, great sense of humor, and an awesome soundtrack! It premiers Wednesday, September 25. Check out this hilarious trailer:

Evil - And one more paranormal entry for this new fall season! A logic-driven clinical psychologist teams up with a representative from the Catholic church to investigate strange cases to determine, among other things, if someone is possessed or a psychopath. Looks intriguing - could be good. It starts Thursday, September 26.

Favorites Returning to Streaming - 

And, finally, we have several of our favorites returning to streaming services later this fall. Yes, I realize this is a LOT of shows - we probably won't dive back into those on streaming until the network shows go on hiatus for the holidays.

Shameless - We don't get Showtime, so we have always watched this hilarious family drama on Netflix, and season 9 just arrived on Netflix - hurray! This is our "watch during lunch on weekends" show, and it never fails to amuse us. Those crazy Gallaghers!

Goliath - OK, so this show starring Billy Bob Thornton as a disgraced, alcoholic lawyer had an excellent first season and a seriously bizarre, warped, graphically violent second season. Thornton is so good, though - as well as the rest of the cast - that we're willing to give it one more try. It returns for its third season on Amazon Prime on October 4.

Tom Clancy's Jack Ryan - This adaptation about the famed character from the Tom Clancy novels stars John Krasinski (Jim on The Office) as a deskbound CIA analyst who gets dragged into field work unwillingly. The first season was excellent and very movie-like (no surprise since there have been countless Jack Ryan movies), and we are very much looking forward to its second season on Amazon Prime, which begins on November 1.

The Man in the High Castle - This alternate history about a world where the Nazis won WWII has been fascinating and twisty, with some sci fi/time travel elements added in. We're looking forward to seeing what happens in season 4, which begins on Amazon Prime on November 15.

The Marvelous Mrs. Maisal - I watched season one of this fabulous show about a wife and mother who wants to be a stand-up comic in the 1950's on my own, but my husband caught up, and we watched season two together. We are both excited for season 3 of this original, color-saturated, funny show, starting on December 6 on Amazon Prime.

(I see my streaming looks biased toward Amazon Prime, but that's just because we've been watching a bunch of Netflix shows all summer, some of which I will be reviewing here in coming weeks).


Monday, September 23, 2019

Movie Monday: Smart People

Miracle of miracles, last month, I had a few evenings all to myself! My husband was traveling, my son was working or out with friends, and I had a little much-needed quiet solitude. I also happened to be sick with bronchitis at the time, which prevented me from my usual problem of working too late into the evenings when I am alone. Instead, I indulged in a couple of movies. My favorite from that week was Smart People, a movie with an excellent, all-star cast that was funny and well, smart.

Dennis Quaid plays Professor Lawrence Wetherhold, a cranky, unpleasant English professor at a local college. This guy is a real...uh...let's just say, jerk. His wife died years ago, and he has two kids, a son named James, played by Ashton Holmes, who's attending the same local college and a precocious but cool-seeming daughter named Vanessa, played brilliantly by the talented Ellen Page. Vanessa is in her senior year of high school and clearly very smart, but she seems to have all the social graces of her cantankerous father. When Lawrence suffers a concussion caused by an unexplained seizure, Vanessa is annoyed to have to take time from her tight schedule of academics and activities that look good on college applications to go to the hospital. Sarah Jessica Parker plays Janet, the ER doctor caring for Lawrence. Unable to drive temporarily, Lawrence is saved (though he would argue that) by the unexpected appearance of his adopted brother, Chuck, played amusingly by Thomas Haden Church, who is the complete opposite of Lawrence in many ways. With a rocky start, Lawrence and Janet begin to date. The appearance of both Janet and Chuck into the dysfunctional family's lives shakes things a good way. Hijinks, hilarity, and - in spite of their best efforts - growth ensue.

I really enjoyed this movie. The writing is clever, funny, and entertaining, and the cast is outstanding. Lawrence is truly obnoxious and unlikable at the start of the film, and Vanessa isn't much better, though it's clear that they are both isolated and lonely. Janet - though that relationship has its own problems - and Chuck inject some much-needed life and laughter into their dull, solitary lives. Along the way, there are plenty of laughs, even when things are sad. There are some unexpected twists here, too, but ultimately, things turn out far better than how they started - and I like that in a movie, too. It was a very witty and entertaining 90 minutes.

Smart People is currently on Netflix and is also available for $3.99 streaming on Amazon.

Check out the warmth and wit of this movie in its trailer:

Friday, September 20, 2019

September 2019 ME/CFS Research Update

I am WAY overdue for a research update here because I have been spending much of my writing time on articles and my upcoming book, Finding a New Normal: Living with Chronic Illness, which is a collection of my articles and essays (from this blog and articles I wrote for ProHealth) on emotional coping, managing daily life, and living your best life with chronic illness. I am feverishly reviewing edits from my editor now and hope to publish the book later this fall.

I've recently published two articles for ProHealth that should be of interest to my blog readers:
Using a Heart Rate Monitor to Prevent Post-Exertional Crashes

Treating Sleep Problems in ME/CFS
I've written about both of these topics here on the blog in the past (in some cases, a very long time ago!), but these articles include the latest research, lots of new information, and a list of references to scientific studies and articles at the end, which makes them great for sharing with your doctor.

Here's what else is new in the ME/CFS world:

New Clinician's Guidelines
A group of the top ME/CFS experts in the United States has been working together to come up with guidelines for other doctors for diagnosing and treating ME/CFS. You can read and print the results of their work, Diagnosing and Treating ME/CFS. It's a brief 6-page document, suitable for taking to your doctor. I was at first disappointed by the final product, though I can see its purpose now. I knew this group of the best-of-the-best ME/CFS specialists was working on clinician guidelines, and I had hoped for something like Dr. Rowe's Pediatric Primer (he was on this group, too). Instead, this brief document provides some good guidelines for diagnosing ME/CFS for other doctors, but only a paragraph on treatments, with a list of some of the options but no explanation. However, a note after that paragraph does refer to both the Pediatric Primer and a Primer for Clinical Practitioners (2014) that I was completely unaware of. This is a 51-page document that DOES get into the details of many different treatment options. While this primer does not include all treatment options, it is fairly complete and would be helpful for primary care doctors or GPs who may know very little about ME/CFS. So, maybe start with the 6-page document to help your doctor with diagnosis and then offer the longer ones!

3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University
This wonderful annual symposium on ME/CFS research and science was again held at Stanford earlier this month. I missed the live-cast, and it doesn't look like they've posted the videos yet. In the meantime, you can read about the symposium, the scientists that attended, and the agenda. You can also read Reflections of the Symposium from Open Medicine Foundation's founder and CEO here. And you can watch the videos of last year's Symposium (plus a number of other informative videos) on OMF's YouTube channel. I'll post a link to the 2019 Symposium videos as soon as they are available.

Solve ME/CFS Initiative Second Quarter 2019 Research Review
Solve ME/CFS, another excellent research and support organization for ME/CFS, just published its second quarter 2019 research review, which you can read at the link. There is so much exciting research going on in every aspect of ME/CFS! Between this and the Symposium, there is a lot to be hopeful about - the pace of science in this field just keeps advancing faster and faster. I received this review in the mail, and you can also sign up to receive their newsletter here (at the top of the page).

That's all for today - my husband just got home from playing golf, so I guess I need to make dinner. The good news for me personally is that I finally got rid of a nasty case of bronchitis that hung on for a month and wiped me out, so I am back to my normal baseline...which is pretty good!

Tuesday, September 17, 2019

Take Action NOW!

U.S. Patients:
Take a few minutes NOW to send an important message to your Senators, asking them to vote for a current action that would almost DOUBLE the money appropriated for ME/CFS - a much-needed increase of our meager funding. It only took me moments (and I added a brief personal statement, which is not required), so act now! The vote is later this week - let's all let our elected officials know how important this is.
Use this link for a simple form that will look up your Senators for you and quickly send them a message, with all the pertinent information included (and an option to add a personal message).

This is a chance for our voices to be heard, even from our beds and couches!

Sunday, September 15, 2019

Weekly Inspirations: Nature Provides Peace and Healing

The blog has been quiet for awhile because I had a nasty bout of bronchitis that wiped me out and lasted four weeks, and...we spent last week on a camping vacation. It was the first full week of vacation we've had all year, due to illness, family crises, weather, and family funerals out of state, so we REALLY needed a break! Our camping vacations are more than just a break from normal routine, though. My husband and I both find that time spent in nature is rejuvenating and healing. It provides a sense of peace and tranquility we just can't find in the midst of our busy lives and the ever-connected modern world.

I've written here many times about the positive effects of spending time in nature - because it is a truth I keep rediscovering! I also wrote an article for ProHealth, The Restorative Power of Nature, that includes the research on the benefits (both physical and mental) of spending time in nature and how YOU can manage more time in nature, even if you are severely limited by your illness - even if you can't go outside! My article seems to have gotten missed when ProHealth redesigned their website recently, but you can read the full text at the link, in a previous blog post.

This past week, we spent almost all of our time outdoors, since we were camping, and both campgrounds we visited were mostly quiet (we did get some rowdy neighbors one night!). We stayed at Clarence Fahnestock State Park in New York's Hudson River Valley - a huge eye-opener for us! We'd never visited this beautiful region before, and we were stunned by how picturesque and undeveloped the Hudson River is (north of NYC). Our second stop was at North-South Lake in the Catskills, which is so far up into the mountains and remote that there was no cell service for miles!

Best part of camping - reading by the campfire
I find that there are two different ways to experience nature. One is in the larger sense, when you appreciate a stunning view of a natural landscape, and it stops you in your tracks. We experienced that this week both in the beauty of the Hudson River from overlooks and a pedestrian bridge and in the peace and tranquility of North-South Lake, especially at dusk and sunset, with almost perfect silence, other than sounds of nature, and heart-stopping natural beauty.

View of the Hudson River from Walkway Over the Hudson in Poughkeepsie, NY

View of the Hudson River from an overlook (West Point is downriver on the other side)

Breath-taking view of the surrounding landscape from an overlook in the Catskills (can see 4 states!)

North-South Lake at sunset - perfect peace

The other way to experience nature is in a smaller sense, up close and personal. Listening to bird song, crickets, and the wind in the trees brings instant calm and allows you to slow down and tune in to the natural world around you. When we are camping, we notice everything around us - wildlife, plants and trees, blue sky and clouds, and the star-filled sky at night. Although we notice a lot when hiking or even just sitting around our campfire, we both find that kayaking is one of the most peaceful, nature-soaked things to do. Floating out on a calm lake with nothing around but nature makes you notice the birds flying by, reflections in the water, cloud patterns above, and the flora and fauna both in the water and on the surrounding shores. It provides a perfect calm, especially at the end of the day. if you can't manage kayaking yourself (I can now, after treating OI), ask a friend or family member to take you out in a tandem (for 2) kayak, canoe, or other boat.

Floating on the lake at dusk, soaking in the peace & tranquility

First signs of fall color

Water lily and lily pads

A duck friend floating by

If you think you can't enjoy any of can! First, check out my tips for Camping and Enjoying the Outdoors with ME/CFS, based on our almost two decades of continuing our outdoor time in spite of my illness (when our sons were younger, three of us had ME/CFS, but we never gave up our camping traditions). There are lots of ways to accommodate your limits so that you can enjoy time outdoors. And, you can also do what we did and work to improve your condition so that you can do even more outdoors. Here is a summary of the treatments that have been most effective for me and my sons over the years, allowing us to be more active and feel better, with fewer crashes.

And, as I explain in that ProHealth article above, even if you are so severely affected that you can not leave your home, you can still enjoy the benefits of nature. On my bad days, I lie in a zero-gravity chair out on my back deck or porch. Leave the electronics inside and just tune in to what you can see, hear, and smell around you. The physical and emotional benefits are real. Even if you can't go outdoors, studies show similar physiological benefits from looking out a window (open, if possible, so you can also listen, but through glass works, too), or...just looking at photos of nature on a screen has similar benefits! So, I hope you have enjoyed the photos I included here (click any of them to enlarge). You can also try this playlist from TED called Sounds of the Wild, a collection of talks filled with pictures and sounds of nature. This TED Talk, Nature. Beauty. Gratitude. includes gorgeous nature photography. And this TED playlist, Reconnect with Nature! provides lots of inspiration on ways to enjoy nature, along with more beautiful photographs.

We are back from our trip now, reconnected to the world (and with 500 unread e-mails waiting for me!), but this morning, I am writing this in my reclining chair out on our porch, listening to the sounds of the birds and the breeze through the surrounding trees. Give it a try - even just 10 minutes in nature (or looking at nature!) will make a difference in your life. I am newly committed to getting outdoors every day, even if it's just to my back deck.

My back deck provides close-by nature (but leave the laptop inside!)

Monday, September 02, 2019

Movie Monday: The Art of Racing in the Rain

Although I didn't remember all the details of the plot, I remembered reading The Art of Racing in the Rain by Garth Stein about ten years ago and loving the novel. In preparation for the movie adaptation, my husband read the novel last month, and we invited our good friends (who had not read the book) to come with us to see the movie version, The Art of Racing in the Rain, in the theater a couple of weeks ago. All four of us loved the movie, and - like the book - it made us both laugh and cry (yes, all of us!).

This unique story is narrated by a dog named Enzo. Now, stick with me here, because this isn't my usual kind of thing, but this is an extraordinary dog and an extraordinary story. As Enzo, voiced by Kevin Costner, explains early on, he believes that dogs that are ready and have learned enough will be reincarnated as humans (he saw this on a documentary about Mongolian beliefs), and so, his goal is to learn enough about being human to take this important next step. As a puppy, he was adopted by Denny, played by Milo Ventimiglio, and named Enzo (after the Italian racer and founder of Ferrari) because Denny is a racecar driver. The two immediately bond, and Enzo often comes to the track with him and watches racing on TV with Denny, both televised races and recordings of Denny's own races, as Denny imparts his wisdom about racing. Enzo's not too sure what to think when Eve, played by Amanda Seyfried, comes along, but soon they are a close-knit family of three - and eventually, four, when Zoe is born. Life is idyllic for all of them for a while, until tragedy strikes. Through it all, Enzo remains loyal and steadfast to Denny and the rest of his family. It's no spoiler to say that Enzo does die in the end because of course, dogs don't live as long as humans do and also the movie begins with Enzo's imminent demise, as Enzo looks back and tells the story of his life.

So, let's deal with that first. When I told our friends it was a movie about a dog, knowing they are dog lovers who own two dogs themselves, my friend asked, "Is it sad?" I explained that, yes, there are some sad parts in the movie but that it also has moments full of joy and plenty of laughs, too, so they agreed to come see it with us. As I said, all four of us loved the movie, and yes, all of us cried, but we all laughed a lot, too. It's a story about life, with all of its ups and downs, joys and sorrows, so it makes you feel, and what more can you ask from a story? My husband and I thought the movie adaptation was very well-done. He had read the book much more recently and pointed out a few minor changes from book to movie, but overall, the movie sticks pretty closely to not only the plot points of the book but also its emotional feel. The all-star cast did a great job, though, of course, Enzo is the real star of the show. This is a wonderful movie for most ages, though I would be cautious with younger kids who might not be comfortable being confronted with the realities of death. But for teens and adults, it's the perfect movie for different generations to enjoy together - or friends, as we did. Any movie that can make you soar with joy and sob with sorrow, all in less than two hours in a darkened theater, is a winner in my book.

The Art of Racing in the Rain is currently playing in theaters, though probably not for much longer. You can look up local theaters and times (go for recliner seats!) and/or buy tickets at Fandango:

It is tentatively scheduled for release on streaming through Amazon and on DVD in November 2019. It can be pre-ordered now.

Tuesday, August 27, 2019

TV Tuesday: In the Dark

Sorry for the lack of posts this past week. I have been battling a nasty case of bronchitis that hit me like a freight train. I caught it from my 94-year old father-in-law, and as always with ME/CFS, it has hit me hard, though I got on antibiotics right away, knowing my history! I am feeling just a little bit better today - able to sit up at least - so I thought I would attempt a quick TV review.

Serendipity worked in our favor recently. We've had a dearth of summer TV this year, and we finished several shows we were enjoying on streaming services. A show we'd never heard of popped up on Netflix right when we were in the mood to try something new - In the Dark - and it turned out to be a real winner! This mystery/thriller about a blind woman with a serious attitude problem is suspenseful and compelling but also funny - a perfect combination for us!

Murphy, played by Perry Mattfeld, is a blind woman with a serious chip on her shoulder. She was an unwanted foster child for many years, finally adopted by loving parents, Joy, played by Kathleen York, and Hank, played by Derek Webster. They love her dearly, in spite of her prickliness, though they are over-protective even now, when she is a grown woman. They opened up a business training service dogs, where Murphy is employed, though she doesn't do much there or take the job seriously. She is, though, beginning to bond with her own service dog, Pretzel, even if she doesn't like to show that affection openly. Murphy has only opened up to two people and allowed them to get close. One is her roommate, Jess, played by Brooke Markham, who works as the veterinarian at the dog training school. The other is an unlikely friend, Tyson, played by Thamela Mpumlwana, a teenaged black boy who works in the alley near her apartment building selling drugs for his older cousin, Darnell, played by Keston John. Murphy has a habit of smoking cigarettes in that alley and, against all odds, she and Tyson starting talking one day and became good friends. She also has a habit of getting drunk in a local bar, and one night, heading home from the bar, she stops for a cigarette in the alley and stumbles over Tyson's prone body. She kneels down and feels his face and is certain he is dead. By the time the police are called to the scene, though, Tyson's body is no longer in the alley, and all they have is the word of a drunk, blind woman. Despite their insistence that there is no evidence of a crime and Tyson probably just ran away, Murphy begins hounding the lead detective, Dean (or That Cop as he is labelled in Murphy's phone), played by Rich Sommer, one of our favorite supporting actors from Mad Men and GLOW. Murphy continues to do her own investigating of the crime, as the police mostly ignore it and the tension and danger grow.

There is so much depth to this show that it's difficult to write a brief synopsis. Yes, it's a mystery/thriller about what happened to Tyson, but the show is also very much about Murphy's unique character and her relationships. During the course of the first season, she develops her first-ever dating relationship (she's generally more into angry, anonymous sex with strangers) and shows a softer, kinder side when she meets Detective Dean's teen daughter who is newly deaf. Viewers also learn more about her friendship with Tyson and what else was going on in his life before this incident. Add to that, drug dealers, criminals, real danger, and a complex mystery, and you have a first-rate show. The acting is excellent all-around, though Mattfeld as Murphy is outstanding, playing her complex character perfectly. Finally, despite the serious subject matter and depth of emotion, this show is also really funny at times! Several shows we have watched this summer were just unrelentingly dark, but we love when a show can combine humor (perhaps dark humor!) with the suspense and action - it just makes it so much more entertaining.

So far, we have watched seven episodes of the thirteen episodes in season one, and I was excited to see that a season two is planned as well! A CW show, episodes 9 through 13 are currently available at the CW website. The entire first season is available on Netflix, and it is also available on Amazon for $1.99 an episode or $14.99 for the first season. Season 2 is planned to run on the CW sometime in 2020 - no release date has been announced yet. We are really enjoying season 1 and can't wait for more.

In this brief trailer, you get a good idea of Murphy's prickly personality (to put it mildly!), her special friendship with Tyson, and both the suspense and the humor of the show.

Tuesday, August 20, 2019

TV Tuesday: The Widow

Adrift without any of our favorite On Demand shows on network or cable this summer, my husband and I have been trying out some new shows on streaming (we have Netflix and Amazon Prime). I recently wrote here about Hanna, which we both loved, so we decided to try another new show on Amazon, The Widow, a fast-paced thriller that we both enjoyed.

Kate Beckinsale plays Georgia, a widow living a solitary life in a remote corner of Wales and still clearly grieving over her husband's presumed death three years earlier in the Democratic Republic of Congo (DRC), when a plane crashed and everyone on board was killed. She sees a news story about a riot from DRC on television, and becomes certain she spotted Will, her husband, on the streets. She flies to DRC herself and connects with one of Will's old colleagues, Judith (played by Alex Kingston, one of our old favorites from the days of ER), in the aid organization where he used to work. She also contacts Emmanuel, played by Jacky Ido, whose wife was also killed on that same flight; the two got to know each other in the days after the crash, while waiting for news of its victims. No one else believes that Will is still alive, but Georgia's friends offer to help her, as she follows leads through DRC and Rwanda. She quickly zeroes in on Pieter Bello, played by Bart Fouche, another person she met in the days after the crash, who seems to be somehow involved. Meanwhile, the audience sees flashbacks and present-day scenes of exactly how the plane crashed (hint: not the way it was reported) and that there was one survivor, Ariel, a man from Iceland, who kept his survival a secret because he knew too much about the crash. Georgia follows clues across central Africa, while one dangerous secret after another is revealed.

We both enjoyed this action-packed international mystery-thriller that is something of a mini-series, telling a complete story in just eight episodes. It's one of those stories that is built on a house of cards of lies, secrets, and illegal activities, so there is plenty of suspense that kept us coming back every night to find out what was going on and what really happened to Will. The acting is good, we liked the characters (except the ones we were meant to hate), and we enjoyed the unusual setting, in places we personally know little about. Some of the motivations and explanations for characters' actions seemed a little far-fetched to us, but we went with the flow. On the other hand, there is a very moving plotline about child soldiers, with an outstanding performance by a young girl, Shalom Nyandiko, that we both found very powerful and well-done. There are lots of surprises in this twisty and entertaining thriller, and we enjoyed this short series filled with adventure and suspense.

The Widow is an Amazon Prime original, so it is available only on Amazon, free with a Prime membership.

Monday, August 19, 2019

Movie Monday: Once Upon a Time in...Hollywood

My birthday gift from my son was lunch and a movie, just the two of us, so we planned a day off last week, before he starts his senior year of college and things get hectic. Since I need to nap in the afternoon, we went to a 10 am showing at a local recliner theater. It was decadent seeing a movie right after breakfast (and having popcorn in the morning)! We saw Once Upon a Time in...Hollywood, and we both loved it, in spite of our different ages and experiences. It has been called Quentin Tarantino's love letter to old Hollywood, and it is that - and a whole lot more.

Leonardo DiCaprio stars as Rick Dalton, an actor who has made his career mostly in westerns and other action thrillers, including as the star of a TV western called Bounty Law. Now, he is worried that the best years of his career are over and is upset when director Marvin Schwarz, played by Al Pacino, suggests he move to Italy to star in a "spaghetti western." Rick's best friend and stunt double is Cliff Booth, played by Brad Pitt. Their careers rise and fall together, though Rick is a well-known star, and no one knows who Cliff is, but that doesn't seem to bother the easy-going, always-grinning friend. The two hang out at Rick's house, which is next door to the home of director Roman Polanski and his wife, actress Sharon Tate, played by Margot Robbie. For now, Cliff is driving Rick around town, and Rick is trying to get Cliff hired as his stunt double, though Cliff's reputation gets in the way. One day while Rick is working, Cliff picks up a pretty hitchhiker named Pussycat, played by Margaret Qualley, and drives her to where she lives, at the Spahn Ranch, which had been rented out for many western movie and TV sets in the past, including Rick's Bounty Law. Since Cliff knows the place, he wants to look around and say hello to the owner, George Spahn, but the ranch is now the home of Charles Manson's "family," and they are not happy about this stranger poking around. As Rick and Cliff continue with their lives, tension builds with Manson and his family in the background.

We both loved this movie, though as my son whispered to me during the first half of it, "this isn't like the usual Tarantino movie!" He was referring to the graphic violence that Tarantino is known for in films like Kill Bill, Pulp Fiction, and Django Unchained. And he's right...until the last scene in the movie, and then we said, "oh, yeah, this IS a Tarantino movie!" But for much of the film, the renowned director has recreated the Golden Age of Hollywood in a way that completely immerses you in the darkened theater (this is a great movie to see on the big screen) with the sights and sounds of 1969. Sure, he's got the cars and fashions, but he goes way beyond that, with classic Hollywood places, billboards, and neon, plus the sound background of 1969, not just in the music in the soundtrack, but in ads heard and the patter of the radio DJ playing songs barely remembered while Cliff drives around town in his car. It's all just so much fun. Of course, most of us remember what happened on August 9, 1969, and the presence of Charles Manson and his crew provide an ominous threat behind the scenes, but Tarantino has some unexpected and clever surprises in store for the audience.  And, of course, the all-star cast is just outstanding, especially DiCaprio and Pitt. Besides the actors I mentioned above in major roles, there are plenty of other big-time stars in minor roles, including Kurt Russell, Dakota Fanning, Bruce Dern, and Luke Perry in his last role. In addition, many Hollywood stars of the time are depicted, like Bruce Lee and Steve McQueen. The historical aspect was lost on my son (though I filled him in a bit), but we both still thoroughly enjoyed every minute of this engrossing, funny, gripping two-and-a-half hour immersive experience that left us with smiles on our face and still talking about the movie days later. Highly recommended. Oh, and be sure to hang around for the credits for a bonus scene.

Once Upon a Time in...Hollywood is currently showing in theaters. You can check for local showtimes and locations and buy tickets (go for those recliner seats!) through Fandango:

You can also pre-order Once Upon a Time in...Hollywood on streaming and DVD (both due out sometime in mid-fall) through Amazon.And don't forget that fabulous movie soundtrack, which includes both music and classic ads and is available now (you can listen to a sample of the album at that link).

Sunday, August 18, 2019

Weekly Inspiration: From Other Chronic Illness Bloggers

I've been seeing so many inspirational posts from other chronic illness bloggers this week that I wanted to share them. There is a wealth of experience and knowledge and understanding here for all of us...and maybe you'll discover a new blog that you like!

True Friends in Unexpected Places
If you have lost old friends due to your chronic illness (as most of us do, sadly) or feel a lack of meaningful connections in your life, check out the excellent post at My Medical Musings about friendship and creating new connections in your life. Like the author, I, too, have started discussion forums and support groups in order to help others but have also gained new friendships and support myself. It's an inspiring post.

And if you need help in exactly HOW to find others in similar situations that you can connect with, both locally and online, check out my own article on ProHealth: Birds of a Feather: The Joys of Community, with the story of how I started a local support group and how you can find others to connect with, online and in real life.

The Five Stages of Grieving Your Diagnosis
For those still in the early days of chronic illness or who have maybe just recently received a diagnosis, Teena over at Whoa Mumma has a great post on the stages of grief, as they apply to chronic illness. Take a look at her wonderful explanation of the natural process of grief in those with chronic illness. One thing I would like to add to her beautifully written post is that these stages don't always happen in this order, and they can recur at unexpected times, even years after you are well into the Acceptance stage. As an example, I wrote this post on Mourning Losses a full 10 years after I first became ill and many years into my settling into a "new normal" and fully accepting my new life of restrictions. That's just the way grief works, and chronic illness is no exception: everyone's path is different, and a stage you finished with long ago - like anger or depression - can still take you by surprise years later. It's OK, it's normal, and you will return to your usual place of acceptance when you are ready.

Chronic Illness and Grief
A Journey Through the Fog, an ME/CFS blogger, has also written about grief this week, in her post on Chronic Illness and Grief. She writes of her own personal journey toward acceptance, including how memories and photos of "the old days" can sometimes be depressing, the emotions she's experienced as part of the grieving process, and the particular grief in losing control over your life and losing income when you can no longer work. A few years ago, I also wrote a Weekly Inspiration post about Acceptance, with some quotes that I found inspiring.

Asking for Help (and Why Everyone Needs to Learn This Important Life Skill)
Finally, A Chronic Voice (one of my favorite chronic illness blogs) has written a very important post about Asking for Help, and I agree with her that we all need to learn this skill...and get over our hang-ups about it. This was SO hard for me at the beginning - and still is to some degree - because I was used to being independent and hated the loss of control and needing help. Luckily, I had some amazing friends who didn't wait for me to ask but just helped me. I have learned over the years that most friends and family DO want to help you, but they don't know what to do and feel uncomfortable asking. That's why this life skill - asking for help - is so important. Check out A Chronic Voice's blog post on this topic, with plenty of inspiration and practical tips, too.

I hope you enjoyed this journey around the Blogosphere today! There are so many wonderful chronic illness bloggers out there, sharing their insights and experience. It is truly inspiring. For more links to chronic illness blog posts, check out the Chronic Illness Bloggers page on Facebook.

And please share your own favorite inspirational links in the comments section!

Tuesday, August 06, 2019

TV Tuesday: Hanna

Earlier this summer, without much of interest on cable, my husband and I turned to streaming and finally watched Hanna, an Amazon Prime show he'd been bugging me to try. He was right - it was amazing! This unique and suspenseful show was engrossing, and now we can't wait for season two.

In the opening scenes of Hanna, Eric, played by Joel Kinnaman, rescues a baby from some sort of isolated institutional facility in Romania. He tries to escape with a woman (clearly, the baby's mother), but the car is blown up. We next see Eric living in a cave in the woods with a teenage girl named Hanna, played by Esme Creed-Miles. He has brought her up there, in the middle of a deep forest in Romania, and is training her intensely: for strength, agility, self-defense, and even in multiple languages. The two have formed a father-daughter bond. One day, Hanna ignores his frequent warnings and goes further than she's ever been allowed to go before. She meets another person (she's never seen anyone but Eric before), a teen boy working in the lumber industry, helping with his dad's business. Hanna begins to experience normal life for the first time, including her first taste of Snickers(!), but her journey outside their boundaries attracts some unwanted attention. Soon, there are military-types after both she and Eric, and they are each forced to go on the run separately. Eric has drilled her as to what to do in this sort of situation, so Hanna is curiously adept at fleeing through various countries and evading capture, though sweetly naive in just about everything else. A woman named Marissa, played by Mireille Enos, is an ex-CIA agent heading up the forces looking for the two runaways, as she tries to cover up something from her past.

Hanna oddly combines a sci fi-type thriller with a funny coming-of-age story, but it works beautifully. The stories of Hanna's beginnings, why she is unique, and who is after her are revealed gradually throughout the first season. She and Eric, both separately and together, are chased all over Europe (and a bit of Africa, too) by Marissa and her team, as Eric scrambles to make contact with old friends and get some help. Many of the episodes are action-packed and suspenseful (and sometimes quite violent), but there are also sweet and often hilarious scenes of Hanna experiencing the outside world for the first time, making her first friend, and testing out what it feels like to be a normal teen-ager. All of the acting is excellent, and it's wonderful to see Enos and Kinnaman back together on screen (though on opposite sides now) - we loved the duo in The Killing (another great show). But Creed-Miles steals the show as Hanna, giving an intense performance where she is alternatively scary strong and sweetly innocent. In all, it is highly entertaining and wholly addictive. We were hooked after the first episode and can't wait for a second season.

Hanna is an Amazon Prime original, so it is only available on Amazon (note that there was also a movie based on the same basic framework called Hanna from 2011, but the link will take you directly to the new TV show).

Sunday, August 04, 2019

Weekly Inspiration: Grateful People Are Joyful People

I have often written here on my blog about gratitude; it's not a new concept to me but something I have embraced as an integral part of my life. I have written blog posts about Finding Joy in Every Day and my Joy Journal. I shared with you my daily #GratefulToday practice, posting almost every day on Twitter and on my blog's Facebook page what I am grateful for and encouraging others to join in (and I have learned that the more difficult it is to come up with something, the more necessary and helpful the practice is!). So, I consider myself well-educated in the importance of gratitude in my life...but yesterday, I was reminded there is always more to learn!

I was visiting and reading other chronic illness blogs (this Facebook page lists loads of great chronic illness blog posts) when I came across My List of Little Joys by Cassie Creley - go check out her post! Cassie writes about how it's been a rough summer for her, with respect to her chronic illness, but then she looks back on the past few months and lists some of the small joys she has experienced. Even though I often write about gratitude and write my daily #GratefulToday post, I realized there is value to a larger look back like Cassie did. This really hit me because I, too, have considered this a rough (perhaps miserable?) summer, with excessive heat I can't tolerate, a lack of outdoor time or travel, and several serious family crises. Despite my generally good outlook, I have been thinking how awful this summer has been and how I can't wait for it to be over. Cassie's post made me realize I am drifting into negative thinking and forgetting to be grateful in a larger sense, even if I take a few moments each day to think about it.

So, inspired by Cassie's post, here are some of my own Small Joys from this summer so far:
  • We cleaned out our screened porch Memorial Day weekend, I bought some inexpensive pillows and plants to spruce it up, and we have been enjoying it all summer.

  • We bought a new-to-us truck to replace our rapidly failing one. Our old truck was much loved and gave us 217,000 miles and lots of memories, but it's nice to have one for trips where everything works!
  • I have been working on two books about chronic illness and have made some important steps this summer - I hired a cover designer and love the final cover, and I found an editor I worked with years ago who is the perfect fit. I finished my part of the editing process and turned the book over to her, which was a huge step forward.
  • We have enjoyed an evening out with friends most weekends.
  • I saw two great movies: Rocketman and Yesterday - I am VERY grateful for movie theaters with full recliner seats!
  • Although our son's decline this spring has been the source of much stress and worry these past few months, we are starting to see signs of improvement from all the new treatments, slowly but surely. Every time we see him smile, hear him laugh, enjoy a meal with him where he's able to enjoy his food, or see him go out with friends, my heart soars, and I feel hugely grateful.
  • We enjoyed a nice trip to my hometown of Rochester, NY, to visit with family and attend a family reunion - the whole weekend was relaxed and enjoyable.

  • My Big Book Summer Challenge! Every summer on my book blog, I host a reading challenge for reading books with 400 or more pages, and I SO enjoy it. I love finally tackling some of the bigger books on my shelves I don't usually have time for, and I love talking to others about the Big Books they're reading, too (there's still time to join and fit in a Big Book or two before September!).

Huh, so maybe it hasn't been such a bad summer after all! Seeing all of these joys listed together like this reminds me that it hasn't been all doom and gloom (and heat).

For one more take on gratitude, check out this TED Talk from David Steindl-Rast, Want to Be Happy? Be Grateful:

His soothing and inspiring talk explains that grateful people are joyful people. He says that often we think that gratitude follows happiness - you get everything you want and then you are grateful - but in reality, it's the other way around: happiness follows gratitude. And he gives some concrete advice on how to be more grateful with his Stop, Look, Go reminder.

So, how about you? What small joys have you experienced this summer? Share your joys and gratitudes in the comments below - as David explains in his talk above, the more we share our gratitude and network, the better the world becomes!

Saturday, July 27, 2019

New Diagnoses and New Treatments ME/CFS and Lyme

Our son's struggles with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and tick infections (Lyme disease, bartonella, and babesia) got even more difficult this year, but he is beginning to see some improvements now, thanks to a variety of new treatments.

It's been a long, hot summer here with seemingly never-ending crises in our family, but the biggest one has been the decline of our son's health. When he moved back home in May (he's 25), he was in terrible shape - worse than he's been in years - with a bunch of new symptoms and 40 pounds lighter. We knew he hadn't been doing well lately, but we didn't realize just how bad things had gotten. I took him to an Integrative Health practice that we'd heard good things about from local friends in our support group. The practice includes several different medical professionals, though we have been focused on two of them: a Nurse Practitioner (NP) who specializes in tick-borne infections (but looks at the whole body) and a Functional Medicine Practitioner, also a nurse, who specializes in GI issues and genetics. Both have been helpful so far, and with a bunch of new treatments and changes, our son is slowly improving. We hope to get him back to the point where he can live independently and even support himself; it is a slow journey, but we are seeing progress. Here's a summary of what we have learned and what he is trying, in the hopes that some of this will help others as well.

Brief History and Background
It's always hard to give a "brief" history of our son's illnesses because it is complicated, but here goes. He became ill with ME/CFS in 2004, two years after I did (his younger brother had milder ME/CFS that began at the same time but he is now fully recovered). By spring 2006, he was doing quite well, thanks to treatment for Orthostatic Intolerance and was back to school full-time, back in band, and even playing soccer again.

In April 2007, he had sudden onset of joint pain, plus all of his usual ME/CFS symptoms worsened. He tested positive for Lyme disease (a lucky thing, since the tests only catch about 60% of cases) and was treated for it. The joint pain improved, but he never really got back to that good state he was in the previous year. Over the next three years, his condition gradually worsened. Finally, some strange symptoms - and the help of other parents online - clued us into the culprit, and we took him to an LLMD, a Lyme specialist. He confirmed that our son had two other tick infections, bartonella and babesia, in addition to Lyme. Since the three infections had been present for so many years (and gone mostly untreated), they were dug into his system pretty solidly and were difficult to treat. His immune problems due to ME/CFS made treatment even trickier.

Fast-forward ten years. With treatment for the three tick infections, plus more treatments for ME/CFS, he improved to the point where he was able to start college on time, live on campus, and graduate with an engineering degree. The past ten years had its share of ups and downs, but each time he got worse, we got the bottom of the issues and treated him. This winter, though, he experienced the severe decline that I described. He was living away from home, there was a lot of stress in his personal life, and I had switched him from his usual tick infection treatment protocol (Byron White) to a different one (Zhang), a change I greatly regret now, so his tick infections had gotten worse, with worsening joint pain, fatigue, nausea, and headaches. In addition, he had developed completely new and alarming symptoms, including severe nausea, vomiting, a burning pain in his stomach, and severe anxiety.

The Tests
Our new medical practitioners ordered a slew of tests at his first visit, including:
  • Genova Diagnostics GI Effects 3-day stool testing
  • Bartonella testing through Galaxy Diagnostics (well-known as the best bartonella testing lab, though still not 100% accurate)
  • Lyme and babesia testing through Igenex (again, known as the best lab for Lyme testing, though no tests can catch 100% of the infections), plus another babesia test through Medical Diagnostic Labs
  • Special stained blood film test through Fry Labs
  • Tests through regular labs for a wide range of viruses and other infectious agents (including other tick infections)
  • Tests through regular labs for Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), thyroid function, celiac disease (gluten intolerance), vitamin D, homocysteine, hemoglobin
  • A more sensitive follow-up test for celiac when the first one showed some gluten sensitivity.
  • We had already done 23andme genetic testing and sent the results through MTHFRsupport analysis - the genetic specialist looked at that, plus sent our data through another analysis tool.
  • Saliva testing for cortisol and adrenal function (in progress).
  • DNA Connections urine test Lyme panel (recommended but not yet done).
  • Ubiome monthly Explorer kit for stool testing as follow-up (in progress).

The Diagnoses
Based on all those tests, we went back for a follow-up visit with both practitioners and learned a lot (some we already knew but much of it was new, recent, and surprising):
  • Severe overgrowth of bacteria in GI tract - the GI Effects test showed that he had very high levels of more than a dozen different nasty bacteria strains. The genetic specialist could point to specific bacteria strains and tell us what symptoms they caused, including the burning pain in his stomach, joint pain, and anxiety.
  • Low hydrochloric acid in stomach, which contributes to some of his GI symptoms.
  • Slightly low (low-normal) Total T3 (a measure of thyroid function); other thyroid measures normal.
  • Celiac disease/gluten intolerance (something we never suspected).
  • Low vitamin D3 - astounding since he takes 5000-10000 IU per day, though he wasn't taking all his meds the past few months since he often couldn't hold food or medicines down.
  • Viruses: EBV, CMV, HHV-6 - all previously negative and now present.
  • West Nile Virus - another big surprise.
  • Babesia - negative (confirming our former LLMD's conclusion that he got rid of this one infection).
  • Bartonella - 2 strains present.
  • Lyme - equivocal results but likely, given his history and symptoms.
  • Though babesia is gone, many other unidentified protozoa showed up in the blood smear.
  • Lots of biofilms in his blood (sticky clusters of cells - Lyme bacteria is known to convert to biofilms, which is part of what makes it so hard to treat).
  • Yeast overgrowth (which we already knew about and have been treating). 
  • Genetic results showed he may be an over-methylator.

The Treatments
  •  Nrf2 Activator (a Xymogen product) -  to activate the Nrf2 genetic pathway (per his genetic results - this is one of two genes present in those who don't respond fully to treatment for Lyme disease). This pathway regulates the production of important molecules that impart antioxidant activity, such as glutathione and superoxide dismutase (SOD). It also regulates the production of detoxification enzymes.
  • Resumed A-Bart and started A-L Complex, herbal formulas for bartonella and Lyme, respectively, that are part of the Byron White protocol. He'd previously responded well to A-Bart. He is VERY sensitive to tiny doses of any tick infection treatments, so he is only taking 1-2 drops of each per week so far and having to build back up very slowly.
  • Added CBD Oil, as needed for nausea, vomiting, stomach pain, joint pain, and anxiety - it's been very, very effective for him in controlling these symptoms in the short-term, while we work to eliminate their causes in the longer-term. We are using the Plus CBD Oil brand, which we buy at our local natural foods store and have found to be effective. Sometimes he buys edibles at a local dispensary, and the vape pen was also effective but effects didn't last long (if using vape, ask for solvent-free).
  • Cytomel 5 mcg (Rx) - a tiny dose for his slightly low thyroid T3.
  • OrthoDigestzyme - 1 pill upon waking, gradually working up to 3 per day, before meals - to treat bacteria in GI tract, stomach pain, nausea, vomiting, and lack of appetite. Saw immediate improvement from the first week. 
  • Changed Probiotics - stopped all probiotics he was taking, except saccharomyces boulardii (for yeast) and added UltraFlora Integrity - to treat bacteria in GI tract, stomach pain, nausea, and yeast overgrowth.
  • ATP 360 - 1-3 per day for improved mitochondria function and energy production.
  • P-5-P 25 mg - an active form of vitamin B6 that I was already taking.
  • Mega Mycobalance - 5 capsules 1-3 times a day - for yeast overgrowth 
  • Stopped methylcobalamin (B12) injections - continuing hydroxycobalamin (B12) injections (Rx) every other day only (due to genetic results).
  • Reduced 5-MTHF (20 mg - we buy both 15 mg (at link) and 5 mg) from every day to 3x/week (due to genetic results).
  • Moved Magnesium-l-threonate from afternoon to bedtime (3 pills) to help sleep. 
  • Switched from acetyl-l-carnitine to Carnitine Synergy, a product that includes both acetyl-l-carnitine and carnitine.
  • Eliminate gluten from diet.
  • Rinse with Biocidin after brushing teeth - to help with certain oral bacteria found in his GI testing. 
  • Eat 2 Tablespoons of navy beans twice a week to help with Collinsella bacteria.
Results So Far
  • Stomach pain, nausea, loss of appetite are all greatly reduced and vomiting is now rare. He can eat again, hold down his food, and is beginning to gain back some weight.
  • He's working as a waiter 2-4 nights a week.
  • Anxiety is reduced, though still an issue.
  • His average daily rating of how he feels (on a scale of 1 to 5, where 1 is good and 5 is incapacitated) has improved from a low of 3.3 to 2.8.
  • His % of time crashed (at a 4 or 5) each month has improved from 42% to 19%.
  • He's had the energy to enjoy time with friends or his girlfriend several times a week.
So, he is doing better, improving slowly but surely. He is continuing to work on diet and increasing the dose of the new supplements listed above. He has more testing to do (the saliva test and the follow-up GI testing through Ubiome), and follow-up appointments at the end of August. All these new supplements on top of the many pills we already take are a lot to keep track of, but we're helping him to juggle it all.

Now you see why I haven't had as much time for blogging or social media this summer! This crisis was frightening for all of us, and he really hit bottom by May, but we are hopeful that he will continue to improve. His goal is to make use of that engineering degree and get a full-time job so he can support himself.

I recognize that his particular set of problems is both unique and complex, but I thought that elements of what he's been dealing with would be helpful to others. In particular, I highly recommend the GI Effects testing kit from Genova Diagnostics - we learned so much surprising information from that.

Have you dealt with any similar problems? Or found some effective solutions to some of these problems? Please share your experiences in the comments below.