Monday, October 24, 2016

Movie Monday: The Girl on the Train

We had a Big Event here last week: my husband and I went out to dinner and a movie on $5 Tuesdays at our local theater. What got us off our couch and recliner? The Girl on the Train, the recent adaptation of a novel by Paula Hawkins (review at the link) that we both enjoyed reading last summer. We both loved this twisty and suspenseful movie that stuck pretty closely to the the book. This movie also fits perfectly with my R.I.P. XI Challenge, to enjoy spooky, creepy, suspenseful fare during this Halloween season.

Emily Blunt stars as Rachel, a woman whose facade of having it together quickly falls apart in the first scenes of the movie. She rides the train back and forth into NYC each day, presumably commuting to work, dressed in a suit and carrying a water bottle. But we soon see that she fills her water bottle with vodka! Rachel likes to stare out the windows at the backs of houses that abut the train tracks, catching glimpses of other people's lives.

One house in particular catches her attention. Its occupants are a man and woman who look to Rachel like they have the perfect relationship & the perfect life together. She watches every day as they come out on the upstairs balcony or walk into the yard or kiss in the window. She even names the couple in her mind, thinking of them as Jess and Jason. Then, one day, Rachel sees "Jess" outside on the balcony in her bathrobe, kissing another man who is definitely not her husband. Rachel is horribly upset by this.

That night, Rachel gets drunker than usual in the Grand Central bar (I love that bar overlooking Grand Central!) and impulsively decides to get off the train at the station where "Jess and Jason" live. By now, we have found out that Rachel's ex-husband, Tom, lives on that same street and that Rachel is also obsessed with him and his new wife, Anna, and their baby. Rachel wakes up the next morning covered in blood and mud, with little memory of what happened after she got off the train at that stop. She thinks she might have encountered Anna, but she can't clearly remember anything. Then, she sees on the news that "Jess" - whose real name is Megan - has gone missing, and her frantic husband, Scott, is looking for information on her whereabouts.

From there, the story spirals ever-darker and more complicated, as the viewers learn, bit by bit, more about Rachel, about Megan and Scott, and about Tom and Anna - and Tom's history with Rachel. Rachel inserts herself into the police investigation, getting questioned by the police because she was seen in the neighborhood - drunk - that night, and taking it upon herself to tell Scott about Megan's other man. It's a complex mystery with plenty of twists and turns, and through it all, we are as confused as Rachel as to whether she did something that night or not.

I remember when I read the novel that I suspected a different person of Megan's disappearance with just about every new chapter! The movie does a great job of sustaining that suspense and recreating the uncertainty of the story in the book. Neither my husband nor I remembered all the details (it's a complicated plot line), so we were totally engrossed in the movie.

All of the actors do a good job here, but Emily Blunt is absolutely amazing in her role as Rachel, the ultimate in unreliable narrators. She plays drunk and confused and falling apart remarkably well, especially considering that she was pregnant during filming and not drinking at all! We were confused as to why the movie's creators decided to move the story's setting from London to NY - especially with a British lead actress - but we had to grudgingly admit that it worked. If you like mystery and suspense, this is a dark, twisty tale that will pull you in and not let you go until the final breathless moments.

The Girl on the Train is currently in theaters, with the DVD scheduled for release in January 2017.

Tuesday, October 18, 2016

TV Tuesday: Frequency

I thought I would review another TV show perfect for this creepy season (and my RIP XI Challenge) - this one has some supernatural elements to it. My husband, 22-year old son, and I have started watching the new CW show Frequency and are enjoying it so far.

Raimy Sullivan, played by Peyton List, is a young female police detective who lives in Queens, NY. Her father died when she was just 8 years old, as a detective on an undercover assignment whose colleagues said he'd gone rogue. Raimy and her sister were brought up by her mother, Julie, played by Devin Kelley, who we see in the first episode is dying of cancer.

Raimy discovers that the old ham radio in the garage that used to be her father's suddenly lights up and starts working again, after years of sitting there broken. Raimy's dad loved his ham radio, and Raimy always enjoyed going on it with him. To her surprise, the grown-up Raimy suddenly hears her dad's voice coming through the radio. They begin talking and - after a lot of disbelief and convincing discussions - they figure out that she is in 2016 and he is in 1996, and they are somehow talking to each other. Raimy's dad, Frank, played by Riley Smith, is just one day from the undercover operation that will take his life, and Raimy warms him of what is going to happen, from the crime report she has read.

Well, you know what happens when you tamper with history! The next day, after Raimy warned her dad of what would happen that night, a lot of things - both good and bad - have changed. For everyone else, this is just the way things have always been, but Raimy can remember both the original 2016 world and this new, changed world. She and her dad begin talking every day, trying to work together to solve some serious, life-changing crimes that occur in both timelines and hoping to change some of their own personal tragedies.

Only two episodes of Frequency have aired so far, but we are loving it! It's a police show but with a big twist: communicating across time. I always love time travel plots, and though this is not time travel per se, it has the same element of "be careful what you change in the past because it can have unforeseen consequences," which I love. My husband pointed out halfway through the first episode that this show is based on a movie, also called Frequency and starring Dennis Quaid, that he and I watched a few years ago. We are enjoying the twisty plot so far and can't wait to see where it goes.

Frequency is currently airing on CW network, Wednesdays at 9 pm. You can catch past episodes On Demand, on the CW website, and on Amazon Prime for $1.99 an episode or $24.99 for all of season one.

Research Update from Norway

Cort Johnson of Health Rising has posted an excellent summary and update of some exciting ME/CFS research going on in Norway by the researchers Fluge and Mella, who became known for their ground-breaking studies on Rituximab as a treatment for ME/CFS.

Here are the topics Cort reports on in this very informative and interesting update about Fluge and Mella's latest work:
  • The recent Metabolics study that made headlines is not the first study to look at metabolism in ME/CFS; it is an area that has been studied by many researchers. Fluge and Mella are doing their own studies, focusing on the role of lactic acid in ME/CFS patients.
  • The Phase III trial of Rituximab as a treatment for ME/CFS in Norway continues, with final conclusions due by late 2017 or early 2018. As in previous studies, some patients are responding well to the treatment. If this study is successful, the US will need to do its own studies to get official FDA approval for using Rituximab for ME/CFS (it is already available in the US and can be used off-label for ME/CFS, but it is very expensive).
  • Fluge and Mella are following up with some patients who did not respond to Rituximab and trying alternative drugs, including another cancer immunotherapy drug, cyclophosphamide. Early reports are that is does work for some patients.
  • Fluge and Mella are also looking at the blood of ME/CFS patients, with some fascinating observations. Some of their studies have found low nitric oxide (NO) levels in patients' blood, and they have tested some drugs that increase NO in ME/CFS patients with good results.
That's just a quick overview - Cort's update provides much more detail (but still in an easy-to-understand approach), so I encourage you to click through to his post and read it.

Bottom line is a lot of exciting research on ME/CFS that could lead directly to treatments in the near future...and these two Norwegian scientists alone are having a huge impact and also inspiring other researchers!

Sunday, October 16, 2016

Paleo Pumpkin Coffee Cake

My son and I eat a Paleo diet for medical reasons - it is supposed to be the best diet for those with immune disorders. Paleo means no diary, grains, or legumes and only natural sugars. We are both supposed to avoid all sugars (even natural ones), as well because of our chronic yeast overgrowth. So, I really miss baked goods and especially desserts.

Last week, a friend of mine posted a link to a recipe for Paleo Pumpkin Coffee Cake on Facebook, and I immediately clicked the link and printed the recipe. I made it yesterday and took it to a potluck dinner for our local ME/CFS group, where it was gobbled up! It's really delicious, and my son said it tasted like fall. I agree!

Even if you don't eat Paleo per se, this recipe is dairy-free and gluten-free, as well as low in sugar, so it's healthy for all of us. Food intolerances are very common in people with ME/CFS, and a recent study showed a full 30% of patients with ME/CFS were dairy intolerant. When I eliminated dairy about 12 years ago, my GI symptoms disappeared. Plus, many of us should be avoiding grains and sugars because chronic yeast overgrowth is very common in ME/CFS due to the immune dysfunction (and believe me, it can make you feel awful!)

The recipe is from the blog Jay's Baking Me Crazy, which I had never been to before. You can read the full blog post, see lots of photos, and print a nice copy of the recipe at this link: Paleo Pumpkin Coffee Cake. I don't have any of my own photos because there is nothing left but crumbs! Amazingly, though, it came out looking just like her photo, which is a rarity for me.

I made a few small changes to reduce the sugar content. I cut the maple syrup and coconut sugar in the cake both in half and added in 2 teaspoons of Stevia.  For the crumb topping, I used just 1 Tablespoon of maple syrup with 1/2 teaspoon of Stevia. So, that is a lower-sugar option.

BONUS: I had some canned pumpkin left after making the cake yesterday, so this morning we had Paleo Pumpkin Pancakes with Bacon and Pecans for breakfast, a recipe from Against All Grain, one of my favorite sources for Paleo recipes - mmmm! (Once again, I subbed 2 teaspoons Stevia for the honey called for in the recipe - that was for a half a recipe.) It's been a fall pumpkin cooking bonanza this weekend!

Paleo Pumpkin Coffee Cake

Prep Time: 8 minutes
Cook Time: 50 minutes
Total Time: 58 minutes
Yield: 9

  • 1/4 cup melted coconut oil
  • 1/4 cup maple syrup
  • 1/4 cup coconut sugar
  • 1 cup canned pumpkin
  • 4 eggs
  • 1 cup almond flour
  • 1/4 cup coconut flour
  • 1/2 teaspoon baking soda
  • 1 1/2 teaspoons pumpkin pie spice
  • 1/2 teaspoon cinnamon
  • 1/2 teaspoon salt 

  • 1/4 cup coconut flour
  • 1/2 cup almond flour
  • 2 tablespoons coconut sugar
  • 1/2 teaspoon cinnamon
  • 2 tablespoons maple syrup
  • 2 tablespoons coconut oil
  1. Preheat oven to 325° and line a 9x9 pan with parchment paper.
  2. Make the crumb topping first: in a small bowl, combine coconut flour, almond flour, coconut sugar, cinnamon, maple syrup, and coconut oil. Mix well- it should resemble wet sand. Set aside.
  3. In a large bowl, combine coconut oil, maple syrup, coconut sugar, and pumpkin. Mix well.
  4. Add in the eggs and mix until incorporated.
  5. Add in the almond flour, coconut flour, baking soda, pumpkin spice, cinnamon, and salt. Mix until no dry pockets remain. Pour into prepared pan and top with crumb topping.
  6. Bake for 45-50 minutes.
  7. Store in fridge after the first day.
If you are looking for other Paleo recipes, click on the Paleo category below or in the sidebar. I have also posted many Paleo recipes and cookbook reviews on my Book Blog.

Wednesday, October 12, 2016

New ProHealth Article: Keep Learning, Even from Bed!

I had so much fun researching and writing my September article for ProHealth's Inspiration Corner! It's called Keep Learning, Even from Bed, and it includes a looong list of ways to learn, expand your mind, earn a degree, or even just ward off boredom while you're stuck at home sick.

Once I started digging into the topic, I found some amazing websites that offer both education and entertainment - everything from taking college courses to learning new skills to visiting museums, all from the comfort of your couch or bed! There are some great options here for people who had to leave school because of illness but also plenty to keep the rest of us busy and having fun, too!

Check out the article - it is filled with links to all these great websites. I was so inspired, I had trouble finishing the article and not just watching smart, fun stuff all day!

Tuesday, October 11, 2016

TV Tuesday: Dexter

In honor of Halloween coming up and my RIP XI Challenge (Peril on the Screen), I thought I would talk about an older show that my husband and I have been watching lately. Dexter aired on Showtime from 2006 - 2013. My husband and I watch it when we are camping together because we have it on DVD (it was one of our older son's favorites a few years back), so we can watch an episode on my laptop at night in our little camper, even without electricity or internet.

Dexter is a very odd show, but it really grows on you. The main character, boyishly handsome Dexter Morgan, is a serial killer...and he's the protagonist, the one you root for! Yes, you will root for him, even if you don't think so now...

Dexter, played by Michael C. Hall, works as a forensic blood specialist, analyzing blood spatter at crime scenes and other blood-related forensics work for the Miami police department. His sister, Deb (played by Jennifer Carpenter), also works for the police department as a detective, following in the footsteps of their father. Dexter was adopted into the family when he was just four years old, so he and Deb grew up like real siblings and are quite close (or as close as Dexter is to anyone).

In reality, you know from his narration from the very first episode, that Dexter is a psychopath who  has difficulty feeling real emotions or relating to other people normally. He loves Deb in his own way, though. He also has a sweet girlfriend named Rita, played by Julie Benz. Rita is damaged in her own way from a past abusive relationship, so she and Dexter get along well. She doesn't expect much from him - in fact, is often apologizing for not being ready to move things along faster - and he is fine with that. She has two adorable little kids, a girl and a boy, and they adore Dexter, who is playful & caring with them.

And, yeah, Dexter is a serial killer. However, he is a serial killer with a strict moral code - he only kills really bad guys who kill other people. He calls it the Code of Harry, after his adopted father, a police detective, who carefully trained Dexter. He could see at an early age that Dexter had these urges inside of him and so taught him to release that pressure and allow himself to kill only in a very specific, controlled way (and also, so as to not get caught). It was his way of protecting Dexter, the only way he could. We see that training gradually unfold in flashbacks.

Dexter has most of the people around him fooled - no one suspects that this easy-going, funny guy is really a cold-hearted killer underneath. Well, one person suspects something is wrong: Detective Doakes, played by Erik King, works in Homicide (with Deb and Dexter). Doakes is creeped out by Dexter and is certain he is hiding something sinister underneath his mild-mannered appearance. Dexter can't believe he's the only one creeped out by him when he is surrounded by homicide detectives!

That's the general outline of the show: Dexter helps to solve murders by day and commits them by night, leading a double life. But the crazy thing is that within a few episodes - and definitely by the end of the first season when you know more about Dexter's background - you actually like him. While you may not be rooting for him to kill again (though the people he kills are truly evil), you do hope he doesn't get caught and/or can maybe heal somehow and pull his life together.

This show definitely belongs in the creepy category for RIP XI this month because not only is it about a serial killer, but it can be pretty gory at times. I admit to covering my eyes during some scenes! The opening credits alone will creep you out (not gory, just creepy)! In between, though, it's similar to a typical detective show. Much of its appeal is due to the fact that the cast is excellent. Hall as Dexter manages to be both likable and creepy, Carpenter is fabulous as his sister (and we enjoyed her last year in the Limitless TV show), and the supporting cast are all great, especially David Zayas as Detective Angel Batista. The writing is also top-notch: realistic, engaging, and even funny.

On our last camping trip two weeks ago, we finished season 1 and watched the first episode of season 2 (it's a real cliff-hanger!), and we are totally hooked now.

You can watch all seven seasons of Dexter on Netflix streaming, on DVD, or for free on Amazon Prime or Showtime if you have a Showtime subscription (otherwise you can buy it on Amazon Prime).

Have you watched Dexter? What's your favorite creepy TV show?

Friday, October 07, 2016

Lyme Disease - Back, Again, Still?

Copyright: goldfinch4ever / 123RF Stock Photo
Sorry I have not been posting here much lately. Last week was for a good reason: I was away and offline all week. My husband and I took our first full-week Empty Nest vacation! This is especially exciting for us since our oldest son - now 22 and in college - has both ME/CFS and three tick infections and quite often needs our help, so the "empty nest" is quite an accomplishment for us, even for just a week! In fact, we had planned this trip for the beginning of September and had to postpone it when that son came home sick for almost 3 weeks - first with strep throat and then with bronchitis. So, having time to ourselves with both sons healthy and at school was a big deal!

This week, I haven't been on the blog (or on Twitter or Facebook much) partly because I've been struggling to catch-up after the vacation (I still have over 500 e-mails to get through!). Mostly, though, it's because I have been feeling terrible all week. It started Saturday morning while we were still on vacation - exhausted, achy, etc. I chalked it up to my yeast overgrowth flaring up from sharing a dessert with my husband the night before for our 27th anniversary, but by afternoon, both of my knees started to hurt.

Knee pain for me is a sign of Lyme disease and sets off a panic reaction in me! The last two times I had Lyme, severe, intense knee pain was my primary characteristic. It never happens "just" from ME/CFS, only with Lyme. By Sunday, the knee pain was crippling, and I sobbed myself to sleep that night (and woke often during the night from the pain). I was still trying to convince myself this was just a fluke, from a yeast flare-up or some other weird ME/CFS symptom. The knee pain only got worse, though, and Wednesday morning, I called our Lyme specialist for an appointment.

I went to see him this morning, and he agrees it is Lyme, based on my history and distinct symptoms. It's the only time I get intense pain like this in both knees with such severity, plus all of my usual ME/CFS symptoms are badly flared up. He implied, and I have been thinking, that is is likely a recurrence of the same infection. There are different school of thought (as there are with every aspect of Lyme!), but most experts believe that when you "get rid of" Lyme disease and feel better, there can still be traces of the bacteria left, hidden and dormant, in your body that can then flare up again years later. For comparison, it helps to understand that the type of bacteria that causes Lyme - a spirochete - is the same type that causes syphilis. The last time I had Lyme, about two years ago, I was certain it was a new infection from my original bout seven years earlier (you can read about it in the linked blog post). This time, I'm a bit more skeptical - twice is a coincidence (and quite common where I live), but three times within 15 years with the exact same symptoms is harder to swallow!

We decided on a different treatment plan today than in the past. I have normally just taken doxycycline (standard antibiotic treatment for Lyme disease when no other tick infections are present), but I am still struggling with chronic yeast overgrowth (quite common in ME/CFS) now, and I know I can't tolerate 2-3 months of antibiotics. The yeast makes me feel as bad as the infection itself does! Instead, he recommended I use the same Byron White herbal protocol that my son has been on for the past few years (he has Lyme, babesia, and bartonella). He feels it will be very effective for me, since we are catching this early, and - bonus! - the formula he is prescribing for me, A-L Complex, is actually antifungal, too, and should help with yeast.

I made my own decision when I got back home (90 minute drive each way!). Since I have to wait for the herbal formula to be shipped, and it is Friday, I didn't want to wait to start treatment. I still have some doxycycline left here at the house and started it at lunchtime today. I'll do that - at a moderate dose - for a few days until the herbal formula arrives. I took my first dose about 3 hours ago and woke up from my nap thinking that my knees were maybe a little better already. Then, I told myself that was crazy! It's only been a few hours....but I see on the post from a couple of years ago that I did indeed start to feel better within hours. So, that is further proof that this is indeed Lyme, whether old infection or new, it doesn't really matter.

Now, for the Public Service Announcement:

Everyone who has ME/CFS or fibromyalgia should see a Lyme specialist (LLMD) to get a full evaluation for all of the common tick infections.

These infections are far more common than most people realize, and they have been found in every U.S. state and on every continent in the world, except Antarctica (yes, we are considering moving there!). Most people (myself and my son included) do NOT see the tick that infects them - the ones that carry infection are the size of the dot at the end of this sentence. Tick infections are almost impossible to tell apart from ME/CFS and Fibro, and the blood tests are not reliable. if you get a positive blood test result, you can believe it, but the tests for all of the tick infections are highly prone to false negatives. The very best Lyme blood test available only catches about 65% of the cases - those are pretty bad odds, especially when your life is at stake. Check out that blog post linked above for more details on symptoms, diagnosis, etc.

So, that's me for now. I'm hoping I will be back to feeling more like myself and my "normal" baseline by next week, so I can get back to more regular blogging.

Thursday, September 22, 2016

Improvements to the US NIH's Involvement with ME/CFS

The U.S. government has a long history of ignoring and minimizing the needs of ME/CFS patients. Our National Institutes of Health (NIH), the primary medical research organization in the country, has for many years allocated a measly $5 million to ME/CFS research annually, which is nothing compared to other diseases with similarities to ours (see below), especially when you consider the numbers of patients.

In addition, although we have an Advisory Committee within HHS (Health & Human Services, the parent group to NIH), the CFS Advisory Committee or CFSAC, with some excellent, high-profile ME/CFS researchers and clinicians, nothing ever seems to come from their recommendations to HHS. It seems like no one has been listening.

So many patients have given up on the government and are bitter and resentful (with good reason!). But we really can't afford to give up because the NIH remains the top medical research resource in the US, in terms of both money and power. If we ever hope to get ME/CFS understood and taken seriously by the mainstream medical community, with real treatment options widely available, then we need NIH behind us.

Finally, there are some reasons for cautious optimism, some recent changes that give us hope for a better future:
  • After the IOM Report in 2015, the Solve ME/CFS Initiative organized a congressional briefing, attended by congressional representatives, reporters, government officials, and 300 live webcast viewers.
  • In 2015, a nationwide working group was formed, headed by Charmian Proskauer of the Massachusetts CFIDS/ME & FM Association, to collaborate on policy changes in government. This working group also joined with the newly formed #MEAction initiative. In December 2015, this large working group issued a joint statement cosigned by 23 organizations and advocates.
  • In February 2016, that new coalition put their words into action in both meetings and letters to congressional members to save our measly $5 million in NIH funding, which was completely missing from the proposed NIH budget. This was critical, since without a line item in the NIH budget, it would have been very difficult to get ME/CFS back into it in future years
  • In August 2016, a group of ME/CFS advocates met with Karen DeSalvo, the acting assistant secretary for health - the highest-ranking meeting with HHS officials in recent history. A second meeting will take place in October 2016.
(These news items all come from the Solve ME/CFS Initiative's Chronicle newsletter, which was involved in all of these actions. You can sign up for an e-newsletter or their paper newsletter to read more here.)

 And just this month, the charter for CFSAC was renewed with some significant changes:
  • The charter includes a new responsibility for the committee to include "strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research." This will help patients' voices to be heard and acted on.
  • Another new item in the revised charter: "The Assistant to the Secretary of Health shall be given the responsibility to coordinate and monitor the implementation of those recommendations adopted by the Secretary." This is significant since the CFSAC's recommendations have gone nowhere in the past - now, someone is responsible.
  • Voting members of CFSAC have been increased from 11 to 13, including 3 who are ME/CFS patients or caregivers (up from 1 previously).
  • Two non-HHS members have been added to the ex-officio list of members: representatives from the Department of Defense and the Department of Veteran Affairs. This is significant because there is considerable overlap between Gulf War Syndrome and ME/CFS, and the DOD funds a lot of its own biomedical research and has access to a LOT of funds.
(This is just a quick summary. For more details on the CFSAC changes, please refer to Jennie Spotila's informative post on her blog Occupy ME.)

So, while the government is infamous for moving at a snail's pace and being non-responsive, these are all positive changes that could result in significant changes for ME/CFS patients in the future. We are moving in the right direction!