Tuesday, October 21, 2014

Excellent Article Accurately Describes ME/CFS and Groundbreaking Research

Every day, my e-mail inbox and Twitter account are filled with links to various articles, online postings, blog posts, etc. about ME/CFS. They typically fall into three categories: those in mainstream media that do a poor job of describing ME/CFS, those in medical journals that are very technical in nature, and those by and for ME/CFS insiders, like patients and advocates. After a while, it can all feel like the same old thing, over and over.

But today, I clicked a link to an article by Kris Newby in Stanford Medicine, Fall 2014, called Immune System Disruption: The Search for Answers and was truly impressed. Newby has done two remarkable things in her article. She accurately describes what life is like for someone with ME/CFS and what the state of research and lack of funding are for our often-ignored illness. And she also describes some ground-breaking research going on at Stanford that is absolutely stunning and gives me hope for a brighter future.

I'm not sure whether this publication is meant for other scientists and researchers or for the general public or both, but Newby did a great job of balancing the technical information and a picture of the real word for ME/CFS patients.

I know all about Dr. Jose Montoya's work at Stanford in treating ME/CFS with antivirals - he is, after all, one of the few great heroes in our limited world - but I was completely unaware of the the other amazing work going on at Stanford for ME/CFS. Montoya put together an incredible multidisciplinary team to look at all aspects of ME/CFS - genetics, infections, immune system, endocrine system, OI, etc. - and there is groundbreaking work being done there by Dr. Mark Davis, PhD, on the immune system that has the potential to change not just the ME/CFS world but many other illnesses as well. In addition, they have a state of the art laboratory, some very specialized equipment, and extensive private funding.

All in all, I was so impressed by this article that I immediately e-mailed the author to thank her. This kind of update gives me hope. Please click the link to read the full article and share it widely.

P.S. You can follow me on Twitter or "like" my blog's Facebook page to help stay up-to-date.

Monday, October 20, 2014

Movie Monday 10/20

My husband was away this weekend, on a golf trip with three friends (my gift to him for his recent birthday), so I took advantage of the time to watch movies that I knew he wouldn't like!

I've wanted to see August: Osage County with its star-studded cast ever since its first release in theaters, but whenever I suggested it, my husband just made a face. He was right - he would have hated it, but I really enjoyed it! Though all of the cast is made up of a Who's Who list of great actors and actresses, the spotlight in this movie is really on the women and their relationships with each other. Meryl Streep, movie matriarch, here plays Violet, matriarch of the Westin family and her three grown daughters, played by Julia Roberts (Barbara), Julianne Nicholson (Ivy), and Juliet Lewis (Karen). They all return to their childhood home in Oklahoma - with husbands, children, and fiancees in tow - when their father, played by Sam Shepherd, goes missing. Violet is a real piece of work, coping with mouth cancer by chain smoking and downing innumerable pain killers so that she is always high and often shouting. The sisters have all the kinds of issues you might expect between sisters who grew up with such an overbearing, passionate mother. Margo Martindale plays Violet's sister, with Chris Cooper as her husband, Charles, and Benedict Cumberbatch (of Sherlock fame) plays their grown son, still embarrassingly referred to as "Little Charles." With all of this boisterous, dysfunctional clan stuffed into one house together, chaos ensues and quite a few deep family secrets are revealed (usually during a family meal!). It was all very noisy, messy, and frenzied (all things my husband would have hated!) and quite sad at times as well, though with some laugh-out-loud moments. All of those top names in acting earn their salaries here (and note that Misty Upham, tragically and recently deceased, also does a great job here as the Native American nurse hired to help Violet (whom Violet refers to as an Injun)).

That was my mainstream hit for the weekend, and on Saturday, I watched a stranger, less well-known film that my husband definitely would have pronounced "quirky." Palo Alto is based on a series of short stories written by James Franco (yes, THAT James Franco - who knew he was a writer?), set in the title town. It is mostly focused on a bunch of bored teens getting into various forms of trouble. Teddy seems like a sweet kid, but he drinks and smokes a lot of pot with his friend, Fred, and ends up with a DUI and related charges. April is a star soccer player but a bit insecure off the field; she seems aware that Teddy likes her, but doesn't follow up on it. She babysits for her single-Dad coach, Mr. B. (played by James Franco), who professes his love for her and initiates an affair (yeah, ew). Meanwhile, Fred starts a relationship (of sorts) with the promiscuous Emile. As Teddy is tied up doing his community service (and is supposed to be avoiding Fred and his illegal temptations), Fred spins more and more out of control. Each of these teens pretty much hits bottom at some point, though the movie ends on a hopeful note for most of them. I enjoyed this serious teen drama - it held my interest and sometimes reminded me a bit too much of my own indiscretions in high school - though I wouldn't list it as a favorite.

Have you seen any good movies lately?

Saturday, October 18, 2014

Quote It Saturday 10/18

In this occasional feature, I like to share a quote, usually from a book, that I have found moving or inspirational or just something that I identify with. This week's quote is an old favorite and a powerful one for me; for over a decade, I've had it printed in big letters over my desk in our home office:

Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future.  Hope acknowledges the significant obstacles and deep pitfalls along that path.  True hope has no room for delusion.  Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them.

There are real options and I have genuine choices.

What I do can make a difference.

My actions can bring a future different from the present.

I have some control over my circumstances.

I am not entirely at the mercy of forces outside myself.

- “The Anatomy of Hope”, Jerome Groopman, M.D.
I first read The Anatomy of Hope when it was newly released and I was newly diagnosed. I'd been horribly sick for over a year at that point and finally had a name for my illness, which I was glad of, but the fact that I had a CHRONIC illness was new to me, and I was mired in depression. It was a dark period in my life - my darkest ever to that point (until my sons got sick, too), and this book saved me. I read it again a few years later and found it to be just as powerful, moving, and helpful.
Back then, I reviewed the book on my book blog and wrote two blog posts on this blog about it: Chronic Illness and Hope and Hope, Part 2 (check out his metaphor of living with chronic pain as living within an electrified fence - it's perfect for ME/CFS). I recommend you go back and read those posts, especially if you are in need of some hope, and - more importantly - get a copy of The Anatomy of Hope from your library or bookstore and read it for yourself. It really did change my life.
In fact, earlier this week, I bought a copy of the book and mailed it to my dad with a note. My father has melanoma that has recently been upgraded (downgraded?) to Stage 4 and is struggling with hopelessness now, so I'm hoping this book will help him as much as it helped me.

Hope you are having a good weekend - keep hoping!

Wednesday, October 15, 2014

Giant ME/CFS Research Project Launched!

This past month of crashes, infections, traveling, houseguests, and big events has left me seriously behind the times in ME/CFS news. I've glanced at headlines but have otherwise had no time/energy to dig deeper or understand recent events. I'm trying to catch up a bit this week, both for my own benefit and for the blog, so stay tuned.

I like good news best, so I'll start off with some really amazingly good news in the ME/CFS research world:

As reported by Cort Johnson at Health Rising (a fabulous blog/website for ME/CFS that I highly recommend), a high-profile member of the medical research community has announced a new, huge project designed to unravel the mysteries of ME/CFS. Ron Davis, PhD, will be heading up a research consortium to focus on ME/CFS, including both ME/CFS experts and outside experts in certain fields. The "End ME/CFS" project will be created by the Open Medicine Foundation (OMF), and they are planning to secure funding to the tune of $5 million dollars a year. That's about double the National Institute of Health's (NIH) total funding for ME/CFS, just to put things into perspective.

But it's not just the money that is significant in this announcement (though that's certainly important!) - it's also the background, planned strategy, and personal motivation of Dr. Ron Davis who will be heading up the project. He's headed up the Stanford Genome Technology Center for 20 years, has won several prestigious awards, and published over 500 scientific papers. In an Atlantic Monthly article last year, Davis was noted as one of eight inventors that future historians will consider the greatest inventors of our time, based on his work in genetics.

In the case of ME/CFS, though, Davis has additional motivation besides new genetic discoveries: his own son has very severe ME/CFS, so this project is highly personal for him.

You can read more about Davis and the details of this project in the excellent Health Rising article.

To donate to this ground-breaking project with the lofty goal of solving and ending ME/CFS, head over to the OMF donation page. I just made my donation!

I like good news.
eight inventors tomorrow’s historians will consider the greatest inventors today.

Read more: “End ME/CFS” Mega Chronic Fatigue Syndrome Project Begins http://www.cortjohnson.org/blog/2014/10/11/end-mecfs-mega-chronic-fatigue-syndrome-project-begins/
eight inventors tomorrow’s historians will consider the greatest inventors today.

Read more: “End ME/CFS” Mega Chronic Fatigue Syndrome Project Begins http://www.cortjohnson.org/blog/2014/10/11/end-mecfs-mega-chronic-fatigue-syndrome-project-begins/

Thursday, October 09, 2014

Activity, Crashes and Infections, Oh My!

It’s been a while since I’ve had the time and/or energy to write a post here, and I hardly know where to begin. The last couple of weeks have been full of all kinds of unusual activities, milestone events, and houseguests, while I’ve battled infections and ongoing ME/CFS crashes.

Back on September 15, I wrote a post about how my immunesystem treatments helped me to avoid a lengthy crash when exposed to a virus. I think I jinxed myself with that post! Although everything I said there has been true for the last couple of years, ever since I started taking Imunovir/inosine, this particular virally-triggered crash this past month has been the exception. The news has been filled with warnings about an unusually bad enterovirus going around this fall, so perhaps that is what I’ve encountered. Who knows? I can (and often do) drive myself crazy trying to figure out why these things happen, but the bottom line is that I’ve still been struggling the past three weeks with what feels like a virally-triggered crash.

Meanwhile, my life has been extra-busy and filled with once-in-a-lifetime milestones that just couldn’t be ignored. My husband and I had plans to go to New Orleans for our 25th wedding anniversary at the end of September. That’s where we first met and where we both lived when we were first dating and then married, so it’s someplace very special to us, a city that got into our blood (as it tends to do) and still feels like home to us. I hadn’t been feeling well the week leading up to the trip, but I rested as much as I could, and by Saturday morning when we left home, I was doing a bit better.
Ken and I in New Orleans last week
I’ll leave the details of the trip and how ME/CFS affects travel for another post. We did enjoy ourselves, but I was still pretty wiped out much of the time, and all the walking really took a lot out of me. By the time we headed home last Tuesday, I could tell I was not only crashed but had bronchitis.

Like most people with ME/CFS, my immune dysfunction makes me extra-susceptible to bacterial infections, and for me, that often means bronchitis. I went to the doctor Wednesday and she seemed skeptical when I said I just started coughing and feeling the tightness in my chest on Monday, but then she listened to my lungs and agreed it was definitely bronchitis – I know this pattern well! So, I took a 5-day course of Zithromax, but…

I rested all day Thursday, but my husband’s 60th birthday was Saturday, just a few days after our New Orleans trip. My mom and her husband came to stay with us for the weekend, and I’d planned a small gathering of friends and family for Saturday evening. Even though I’d kept the guest list small and ordered everything in – no cooking at all! – it still took a lot out of me because I was feeling terrible again by Saturday. The celebration was a success, though – I think everyone enjoyed the party, and my husband was thrilled by the birthday pies instead of cake (he loves pie!).

Ken and his pies at his birthday party

Sunday, I hit bottom. Slept until 10 am (unheard of for me) and woke feeling awful – severe sore throat, achy all over, exhausted, plus the cough and congestion were back. I did still make breakfast for our remaining crowd, and I had to refill all our meds for the week, but otherwise, I rested all day. We had plenty of take-out left-overs for dinner!

Sunday evening, our beloved little hamster, Lola, died. We knew it was coming, but it was still hard to say goodbye to her. I held her while I laid on the couch her last couple of hours. I woke Monday morning feeling a little bit better, but my dad and his wife arrived Monday afternoon! Yeah, it just goes on and on. My dad has cancer and will probably start treatment next week, so this was their last chance to travel for a while. I am very glad they’re here…but I’m still not feeling great.

So, that’s where I am today. I still have a mild sore throat and aches, still some cough plus some new congestion, still feel pretty wiped out. I am trying to take it easy, but this visit is important to me (and to them). I had to drive my husband to an eye appointment this morning (I’m typing this in the waiting room), but we are ordering Chinese food for dinner today!

After almost a month of ups and downs, I am pretty fed up. I finished my Zithromax and have also been taking loads of herbal antivirals/antibacterials/antifungals – plus restarted Diflucan when I went back on antibiotics – but so far, none of it seems to be helping much.

UPDATE: I wrote all that Tuesday morning but didn’t have a chance to post it between feeling so bad and having guests here. My cough got worse, so I went back to the doctor last night, and she confirmed that I do still have bronchitis…and perhaps the beginning of pneumonia on the right side. Ugh. So, now it’s back on antibiotics – super-strong ones this time (guaranteed to make my yeast-overgrowth flare up again!). My dad and his wife left this morning, and we now have a blissfully free few days ahead, so I am going to try to really rest and take care of myself.

Celebrating our anniversary at a favorite N.O. restaurant

Monday, September 22, 2014

Movie Monday 9/22

Actually, this post could more accurately be called TV Monday, but there's no alliteration in that.

We haven't had time for movies in recent weeks, with moving my father-in-law, soccer games, school functions, and house guests. Since my husband returned from his big trip to help his Dad move here from Oklahoma, we have been catching up on the endings to all of our favorite summer series, and now we are excited about the new fall shows beginning this week. Here are some of our favorites - the summer ones are probably still available online or On Demand:

My husband and I mostly focused on four TV shows in the late summer, including two new ones and two continued from last summer. We watched the second season of Graceland, a fast-paced thriller-type show about a group of undercover law enforcement officers from different agencies working and living together in a house on the beach near LA. We are also just finishing up the second season of Under the Dome, which is based loosely on the Stephen King book of the same name. My husband read the book and I didn't, but we have both enjoyed the TV show.

We also got hooked on two new shows this summer. We loved The Last Ship on TNT, starring Eric Dane (aka McSteamy from Grey's Anatomy!). It's a post-apocalyptic story about a pandemic that sweeps the world, and a Navy ship left behind unscathed because it was on a mission in the Arctic for several months. The crew includes a top virologist (who was in the Arctic searching for answers in the first place), so the ship moves around, searching for supplies and survivors, while the virologist tries to find a cure, and a Russian ship tries to attack them. It's an original premise and a very exciting, action-packed show that also has a lot of heart.

We came a bit late to The Lottery on Lifetime but just finished that one up last week, too. It's a dystopian story about a future world that has endured a fertility crisis - no women have been able to get pregnant for the past six years (and only a few in the years leading up to that). Now, a scientist has made a breakthrough and has 100 fertilized eggs, and the government decides to hold a lottery to find the perfect mothers to carry those eggs to term. But there are evil forces intent on controlling the embryos and the women.

With our older son this summer, we watched Perception on TNT, one of our favorite series, starring Eric McCormack as a neurology professor with schizophrenia who helps the FBI solve crimes. The three of us also binge-watched Orphan Black, a Canadian show shown on BBC (on Demand and on Amazon Prime) that just blew us away! Wow - best show ever. It has lots of surprises, so I don't want to give much away, but it deals with cloning and I guarantee that once you start watching, you won't be able to stop!

On my own this summer, I watched a British show, Last Tango in Halifax, that I just loved. I often watched it when I had the opportunity to have lunch by myself. It is about an elderly man and woman who used to be in love when they were teens but went their separate ways. They are reunited in their 70's (I think?) and decide to get married. It's a show filled with humor and warmth, with lots of family drama.

Now, we are looking forward to the return of some of our favorites this fall from last year: Sleepy Hollow, The Blacklist, The Americans, and Grey's Anatomy. That last one is still a favorite of mine, though my husband isn't very interested any more! We've also been watching Legends on TNT with our son, a fast-paced thriller about a man who makes his living going deep undercover and is in danger of losing himself. That's been excellent so far and is sort of straddling the summer and fall seasons.

For my lunchtime show, I just started Red Band Society last week, a drama about kids in a hospital long-term who bond. I thought the first episode was pretty good. I'm also looking forward to the return of Parenthood for its last (sniff, sniff) season - my favorite show of all time and highly recommended!

I know that seems like a LOT of TV, but this is how we enjoy each other's company in the evening, when I am too wiped out to do anything but lie on the couch!

What are your favorite TV shows from the summer or that you are looking forward to this fall?

Wednesday, September 17, 2014

Is Lyme Gone Again??

Back in July, I came down with Lyme disease for the second time. I think I caught it very quickly - as soon as the joint pain began, I knew exactly what it was. I started doxycyline in mid-July and by July 28, all of my Lyme-type symptoms were completely gone, and I was feeling good again (at my "normal" ME/CFS baseline).

Monday marked 8 weeks with no symptoms, so I stopped taking doxycycline (the rule of thumb is to stay on antibiotics for at least 6 weeks after symptoms disappear).

Now, I am waiting and watching - holding my breath and crossing my fingers - in the hopes that it is truly gone. Last time, I ended up on both herbal remedies and antibiotics for 3 1/2 years, but it took me longer to catch on to what was going on and start treatment. I am also hoping that my recent success in balancing & normalizing my immune system helped.

Wish me luck!

P.S. Here's a post on Why Everyone with ME/CFS or FM Should Be Evaluated for Lyme - and why just getting tested doesn't count.

Monday, September 15, 2014

Treating Immune Dysfunction in ME/CFS

I wanted to share what happened the past few days because it is a great example of how much better I am doing now than I was 5 or 10 years ago, thanks to treating immune dysfunction which is at the heart of ME/CFS.

My college son called last week saying he had bronchitis. It's a common occurrence for him and for me, probably because the characteristic immune dysfunction in ME/CFS generally makes us more susceptible to bacterial infections. By now, he knows the signs and understands how important it is to nip it in the bud, so as soon as he felt that tightness in his chest and began to cough, he saw our doctor and got on antibiotics. He comes home every Sunday so I can refill all his medicine boxes (and for Sunday dinner!), so we'd all been together a few days earlier.

Soon after his phone call, my younger son said he felt like he was getting a cold - scratchy throat, runny nose, etc. These two things taken together - in a house where 3 people have ME/CFS-type immune dysfunction - usually means we have been exposed to a virus, as is typical at the start of a new school year. Like most people with ME/CFS, we rarely catch colds or other viruses, but being exposed to one triggers a crash (which is sometimes hard to tell apart from a virus!). I have always referred to these kinds of crashes as virally-induced or virally-triggered.

In our experience, virally-triggered crashes are the worst kind. In the past, being exposed to a virus like that could knock my older son and I out for weeks or even months in the fall and winter especially (and my younger son, whose ME/CFS was milder, might be down for a week or so).

So, on Saturday morning, when I woke still feeling exhausted with a sore throat and feeling achy all over, I thought I was in for a long, difficult week at least. I had to help my father-in-law with some more moving-in tasks Saturday morning, but by noon I was headed back home to bed. My husband and I had to cancel our rare night out alone in favor of take-out and TV. I woke Sunday morning still feeling awful, with classic crash symptoms.

But then something amazing happened. I took my nap early on Sunday because we were expecting six people for dinner, and I still had to refill our 12 medicine boxes (all of which I was dreading). But I woke up from my nap feeling a lot better. In fact, I managed the medicines and dinner just fine and still felt OK at bedtime. I woke up this morning feeling like I usually do - well-rested and good, with no obvious CFS symptoms!

What was responsible for this almost-miraculous shift from month-long virally-triggered crashes to just 36 hours? I believe it's inosine and other treatments that target the immune dysfunction.

ME/CFS is, at its heart, an immune system disorder, as I explained in that previous post. The characteristics of that immune dysfunction have been well-defined in research studies, with a Th1-Th2 imbalance (Th2 dominance) predominant and low Natural Killer Cell function (it's explained in that post). In the case of ME/CFS, immune boosters or immune suppressants are equally ineffective for us - we need immune modulators or normalizers. Over the years, we have tried several treatments to try to normalize our immune systems, and some have been quite effective.

One of the first things to do is to find and treat underlying infections. The immune dysfunction causes reactivation of dormant viruses and susceptibility to bacterial infections. Most people with ME/CFS will test positive for some viruses that are common but normally dormant in the general population - anti-virals can help with those. Many people also have Lyme disease and/or other common tick infections (a negative test is meaningless, since there are no accurate tests for any of these infections yet), especially if joint pain or severe brain fog are part of their symptoms.

Once you've treated underlying infections - or at the same time - there are various treatments to try to normalize the immune system. Two that we've found very effective are low-dose naltrexone, which gave me an immediate boost in energy and mental clarity, and Imunovir or inosine (similar compounds).

I think the inosine in particular has had positive long-term effects (we started with Imunovir, a prescription medication, but when it became unavailable temporarily, we switched to inosine, the generic equivalent sold in the US as a supplement and found it just as effective and much cheaper). This week's experience is a great example. Since starting inosine, virally-triggered crashes have become rare and only last a few days instead of weeks or months. Winter used to be torturous for me, with one virus after another being brought into the house (with two school-age kids), and my son and I often crashed for much of the season. No more! I also generally have more good days and fewer bad days, and my stamina is much improved (beta blockers also helped with that). Immune-type symptoms (sore throat, swollen glands, feeling feverish, flu-like aches) have become rare.

So, with these improvements, any kind of crash has become rare for me, and a long-lasting one almost never happens now. My allergies have improved, too (another sign of the immune system being more normal). My son has seen all these same improvements, and I think inosine is a big part of why he is able to be at college now, living on campus. These treatments are what are helping us to lead more normal lives, even though we both still have ME/CFS.

Friday, September 12, 2014

I'm Still Here!

Just wanted to pop in for a quick post to let you know I am still here!

It's been a hectic couple of weeks here, moving my father-in-law cross-country from Oklahoma to Delaware and helping him get settled here. I spent all of this week driving him all over town - dentist and doctor appointments, stores, soccer games. I've only been home long enough to sleep and cook meals! He's 89, and I think he's held up with the hectic schedule better than I have.

The movers came today with all his stuff, so we helped him move into his new independent living apartment at a complex close to us. So today was grocery shopping and lots of unpacking. I've enjoyed eating lunch with him in the dining room there the past two days. He seems to really like it so far; it was tough for him to move so far away after spending his entire life out west, but I think he is very happy to be close to us and not so isolated anymore.

So, my husband and I actually have a quiet evening together, after weeks of travel and craziness. We plan to catch up on our favorite TV shows! Yeah, I know, major excitement, right? I'm just glad to be lying on the couch with nothing urgent to do for once.

I've got lots of interesting blog posts written in my head, so hopefully, I will actually have time to get them written in real life next week.

My father-in-law and my husband at our son's soccer game this week.

Monday, September 08, 2014

Movie Monday 9/8

My husband was still out of town this week, helping his Dad pack up and move here to Delaware, so I had another weekend of girl movies! Though, I really missed watching our usual weekly TV shows with my husband. They just got back today.

Friday night, I was feeling crummy, so I treated myself to a feel-good classic, Footloose. Can you believe I had never seen it before? I know, crazy. I thoroughly enjoyed this 1984 dancing classic - it reminded me of Flashdance with a male main character. In case you, like me, somehow missed this popular movie, it's about a teen boy from Chicago who moves to a small town where dancing is outlawed. It stars an unbelievably young Kevin Bacon - half the fun was seeing him as a youngster! Sarah Jessica Parker is also in it, also as a teen - she was only just-turned18 when she acted in this role - with supporting roles by John Lithgow and Dianne Wiest. I loved it, and it was just the pick-me-up I needed, with a great 80's soundtrack, lots of music and great dancing, and a somewhat predictable but still great resolution. After it ended, I wanted to re-watch Flashdance, Dirty Dancing, and other musical 80's classics!

On Saturday night, I watched One Day, a romantic comedy I borrowed from the library. It was based on a unique concept: checking in with two friends on the same day every year for 20 years. Anne Hathaway stars as Emma, a British college graduate who meets Dexter, played by Jim Sturgess, on their graduation day on July 15, 1988. The movie then checks in with the two of them every July 15th. They have a near-miss romantic encounter early on and then decide to be friends. Their lives take vastly different paths, but they always stay in touch and care for each other. I enjoyed the movie, although the format made it a feel a bit choppy at times, especially when major life events occurred that hadn't been shown. Overall, it is unique and different from most romantic comedies. I thought the ending would be predictable, but it wasn't at all - there were plenty of surprises in store.

Have you seen any good movies lately?

Monday, September 01, 2014

Movie Monday 9/1

I had a very rare weekend to myself, with my sons off to the beach with friends and my husband helping his Dad move out here. I rested and recuperated, caught up on a few things around the house, ate take-out, read a lot, and watched a couple of movies my husband wouldn't have wanted to see!

Saturday night, I watched Friends with Kids, a romantic comedy that hit the theaters last year. Jennifer Westfeldt stars as Julie (she also wrote and directed the film!), a woman living in Manhattan who can't seem to find the right guy. She hangs out with her lifelong best friend, Jason, as well as two married couples they are friends with (two of the four friends are played by Jon Hamm and Maya Rudolph). After both married couples have kids, Julie feels her biological clock ticking, so she and Jason decide to have a baby together, as friends. They think they've beat the system, as they happily glide through the baby and toddler years while their friends' marriage seem to be falling apart. But the ideal world doesn't last, and things get complicated when Jason begins seriously dating a young dancer and Julie gets involved with a handsome divorced dad. Although the ending is somewhat predictable, if you've ever seen a romantic comedy before, the movie is still very well done and original, with plenty of laughs and drama both. I enjoyed it.

Sunday night was a bit darker, movie-wise. I watched Sylvia, a film about Sylvia Plath, with Gweneth Paltrow in the lead role. So, yeah, you know how this one ends, and it's not a happy ending, right? True, but it's still an excellent movie. Paltrow is mesmerizing as Plath at all her ages and in all her moods. I haven't read any Plath before, but I know all about her (who doesn't, right?). It's interesting to see behind the scenes into the life of this literary icon, from her life as a Fulbright Scholar at Cambridge to her marriage to famed poet Ted Hughes to her time as a mother and her downward spiral further into depression and eventually suicide.  So, if you think that might be too disturbing to you (my husband would have hated this one!), best to pass it up, but if you are interested in knowing more about the famous poet and novelist and want to see her skillfully brought to life on the screen, then this is the movie for you.

Have you seen any good movies lately?

Sunday, August 31, 2014

Low-Dose Naltrexone Update and Dosing

Long-time readers of my blog will recall that I started taking low-dose naltrexone (LDN) a long time ago - almost 6 years now. It was one of the very first ME/CFS treatments that actually made a significant difference for me and caused obvious improvement in my overall condition and quality of life. Here I want to share a brief update, as well as something new I've learned about dosing with LDN, and some newer links for more information.

For background for those who are unfamiliar with LDN, I suggest you read these earlier posts: my introductory post on LDN and my experiences and an LDN update, including dosing information and how to get started.

Long-term Dosing
So, fast-forward 5 1/2 years...earlier this summer, I was wondering whether LDN was still working effectively for me after all these years. I felt as though I wasn't doing quite as well as I had been when I first started it, that perhaps it wasn't working for me anymore. I turned to the Facebook LDN for Fibromyalgia and CFS group I belong to and posed the question to others who take LDN for these illnesses. Two different people said they'd heard that after being on it for several years, you may have to either lower the dose or take it every other day to keep it effective.

So, figuring I had nothing to lose and it couldn't be harmful to take less, I tried switching my dosing to every other day (still at bedtime and still 3 mg). Wow! Like magic, I felt a surge of energy on this new dosing schedule, just like when I first started LDN almost six years ago. After a week or two (I am always the guinea pig in our house), I switched my son to the same alternating-days dosing schedule. We are both doing well with this.

I have searched and searched online and can't find any official recommendations to do this...but again, how could it be harmful to take less of a medication that is already such a tiny dose? The one hint I could find was on the LDNScience website (see below). On its Q&A page, it says "Can your body become accustomed to LDN's rebound effect?" And their answer is:

"In theory the answer is yes, and therefore it may make sense if LDN is losing its effectiveness to take a break from using it every so often. This question has not yet been addressed in clinical trials."

Well, it has certainly worked for me and my son!

More Information
If you have not yet tried low-dose naltrexone, here are some great resources for learning about it yourself, discussing it with your doctor and educating him/her, and how to obtain it and get started on it:
  • LDN Homepage - the oldest of the LDN websites and no longer being kept up-to-date, but it was started by the doctors who pioneered its use and is still a great place to start to understand what it is and how it works. There is also a list of compounding pharmacies that supply it (we still use Skip's in Florida).
  • LDNScience - a public information project of the  MedInsight Research Institute, this website provides excellent scientific information on LDN, including a short video that explains how it works, the Q&A section I mentioned above, success stories, and a How to Find a Doctor search engine.
  • LDNers - a website focused on the use of LDN in MS but with information relevant to other illnesses as well, including a list of research studies on LDN.
  • Stanford FM study - positive results of a study conducted at Stanford on using LDN for fibromylagia patients (big shock - there have not been any studies done yet on ME/CFS).
  • LDN Research Trust - a UK organization dedicated to research and education on using LDN for various immune disorders, like ME/CFS (and relevant anywhere, not just the UK). The site includes a wonderful LDN Information Packet that is ideal for sharing with doctors plus specific information on how to obtain LDN in the UK.
  • My overview of LDN and my own experiences starting it, 2008.
  • My 2010 Update on LDN, including details on dosing and how to get started.
I think that about covers it. Since immune system dysfunction is at the heart of ME/CFS, and LDN is one way to help normalize the immune system (see also my posts on Imunovir/inosine), this is a treatment that gets to the root cause of ME/CFS. It has definitely helped us...and now with this minor tweak in our dosing schedule, it continues to help us.

Please feel free to share your own experiences with LDN in the comments section.

Monday, August 25, 2014

Movie Monday 8/25

Trying to get back into more of a regular blogging/writing routine again, as summer winds down. I love fall!

And we actually watched a movie this past week. With our college son moved into his new apartment and our teen son out with friends (he got his license this summer and his own car, so we've barely seen him), my husband and I watched Divergent Friday night. We both read the book and enjoyed it, so we have been eager to see the movie but missed it in the theater (as usual).

The movie adaptation stuck very close to the book, which we both liked. The casting was excellent, and it was fun to see the book brought to life. For those who haven't read the trilogy, it is a dystopian YA novel about a future society where peace is maintained by dividing its people into 5 different factions, each with its own characteristics and role in society. The story takes place in and around what used to be Chicago. Just like the book, the movie is action-packed (and sometimes a bit violent) and suspenseful but also has some romance. The main character, Triss (played by Shailene Woodley who also starred in the YA movie-based-on-a-novel The Fault in Our Stars this year), is turning 16 and must choose whether to stay in the faction she has grown up in, Abnegation, or switch to a different faction in the Choosing Ceremony. Overall, we both thoroughly enjoyed the movie and are looking forward to the adaptations of the next two books, Insurgent and Allegiant.

Have you seen any good movies lately?

Saturday, August 23, 2014

SuperBetter Game

As I mentioned in my post yesterday, I am looking forward to some quiet, alone time and trying to get back into some of my usual routines now that this difficult summer is coming to an end.

One thing I like to do just for myself when I wake up earlier than the rest of the family on a Saturday or Sunday is to watch a TED talk. I look for something inspiring or interesting or funny. I have a hard time taking time out of being productive to just take care of myself, and watching one of these talks always perks me up and inspires me (here is one of my past favorite TED talks that I wrote about here).

The TED talk I found this morning surprised me. It seemed to be about video games - which I really don't play, other than a little Words with Friends with my family - but I was intrigued that it was in a playlist of "TED's quirkiest talks that pulled in millions of views." Well, it turns out that this talk is actually directly applicable to those of us living with chronic illness!

When the speaker suffered a serious concussion with year-long severe effects, she developed a game for herself to try to pull herself out of depression and stop the suicidal thoughts she was having. Eventually, that game became SuperBetter, a real game that is now available online or as an app.

It's MUCH better when she explains it herself - it is a short talk and is very entertaining (and fascinating), so take a look for yourself:

Basically, her game takes a fun approach to improving your physical, mental, emotional, and social resilience, and she has LOTS of scientific studies to back up the theories here. And the tasks to complete are super-easy, even for someone who is bedridden. I already feel better!

If you are intrigued like I am, check out her game SuperBetter.

Hope you have a great weekend! Take some time out for yourself.

Friday, August 22, 2014

August Update

Big sigh...my oldest son moved back to college today and my youngest goes back to high school next week, so I am hoping that the flurry of frantic activity that has been this summer will finally slow down a bit. Sorry for the lack of blog posting. I was away with no internet for more than two weeks this month and haven't had a moment to myself since! So, here is a quick update on me and some of the things I posted about earlier this summer:

Youngest Son:
I wrote back in July that my 16-year old son had gone off his Florinef successfully for the first time in 8 years and seemed to be recovered. Well, I am happy to report he is still doing well! It's been about 6 weeks now, and he's still full of energy with no crashes at all. He started soccer last week, with often 3-4 hours of practice a day, and is still fine. He also got his license, a car, and his first girlfriend! In short, we've barely seen him, and he is a normal, active 16-year old. He really does seem recovered. We are thrilled, of course!

Oldest Son:
As I said, I helped my 20-year old son move back to college today. He's the one with far more serious health problems. He's had ME/CFS for 10 years and also has 3 tick-borne infections that went undiagnosed for 5 years. In case you're unfamiliar with Lyme disease, that makes them very difficult to treat and get rid of. He started treatment for those 3 infections about 4 years ago and was in terrible shape (again) this winter until we started working with a dietician and took him off antibiotics and switched to a well-known herbal protocol.

He is still doing well with this regimen, though progress has been slow...but at least he hasn't backslid. The restricted diet is tough for him, but he learned for himself this summer that it really does help when he sticks to it, so he wants to keep trying. He is very slowly increasing his dose of the herbal stuff - he's only taking 1 drop of the stuff every other day! It's potent, and he can tell it's working.  Vitamin B12 shots every other day, chosen specifically for his genetic type, have had an immense positive impact, and the dietician is trying to maximize that with some minor adjustments this fall.

So, he starts his junior year of college next week, still taking 3 classes a semester (but now they are all tough engineering classes so that is quite a feat!). His grades went from barely B's and C's last year to A's and B+'s more recently, so that is further proof that he is improving. It is a struggle for him every day, and I can't imagine dealing with all this at 20, a time in life normally defined by freedom, but he is strong, loves being at college with his friends, and has an incredible positive attitude. He's my hero.

As I mentioned earlier this summer, my Dad was diagnosed with stage 3 melanoma this summer. He's undergone two surgeries so far and as soon as his wounds heal, he will start Interferon treatment. We have been up to Rochester, NY, (my hometown) 3 times this summer to visit. The surgeries have gone well, but he knows he has a tough time ahead. I have been researching supplements and other OTC things that can help cancer patients.

At the same time, we have spent much of the summer making arrangements to move my 89-year old father-in-law from Oklahoma out here to Delaware. The move will finally take place over the next 3 weeks. All of this has been very stressful for the whole family.

Lyme Disease:
About a month ago, I posted that I have Lyme disease for the second time. This time, I caught it quickly and started treatment immediately. Within 2 days on doxycycline, I was feeling much, much better and within about two weeks, there was no sign at all of any Lyme symptoms. That was about July 28. The rule of thumb is to stay on antibiotics for at least 4-6 weeks after all symptoms disappear (because the Lyme bacteria have a 28-day reproductive cycle), so I should be able to stop the doxcycyline in about a month. We just saw the Lyme doctor this week, and he was very pleased that I'd responded so fast (catching it quickly makes all the difference!).

Me Overall:
Despite all the stress and extra activity this past month, I have been doing quite well physically and managing a lot. Besides getting rid of Lyme, we made an adjustment to the way we dose our low-dose naltrexone, and it has made a huge difference. Don't worry - that will be my next post, next week! I just need to find a few minutes to look up some background information. I am still eating a mostly Paleo diet, too - not only to support my son but also to keep yeast overgrowth under control, especially since I am on antibiotics again.

I managed a lot of physical activity on vacation and enjoyed hiking and kayaking. Check out last year's post-vacation post about why I can do so much more on vacation.

So, I am pretty exhausted from everything and my husband and I are both feeling overwhelmed, but all things considered, I am doing well. I am really looking forward to the start of school next week and getting back to a more normal, quieter routine where I can take care of myself better and find some writing time/energy.

How has your summer been?

Visit my book blog tomorrow for some vacation photos for Snapshot Saturday!

Friday, July 25, 2014

Celebrities with ME/CFS

Erica Verrillo, a wonderful journalist with ME/CFS who writes about our illness, has written a new article for ProHealth called 10 Celebrities with ME/CFS. I found it interesting because I only knew about a few of them.

Of course, everyone knows about Laura Hillenbrand, the award-winning author of Seasbiscuit and Unbroken who is housebound by ME/CFS. I knew about Blake Edwards, the famous Hollywood writer and director, and our family has long hailed Michelle Akers, an extraordinary professional soccer player until ME/CFS ended her career, as our own personal hero. But there are many more on this list whom I had no idea had ME/CFS.

Interestingly, it also appears that a few of them have recovered, which is hopeful in itself. I just wish the general public knew more about these celebrities and their/our illness. We need a famous face to help build awareness - our very own Michael J. Fox. I posted this article to my personal Facebook page to help build awareness among my friends and family. It's a small step...

Did you know about these celebrities' struggles with ME/CFS? Do you know of any others not on this list? Help spread the word!

(And a big thanks to Erica Verrillo for what must have been a lot of extensive research!)

Thursday, July 24, 2014

Yes, I Have Lyme Again

I apologize for the lack of frequent blog posts lately. We are dealing with a lot at our house this summer, including urgencies with both of our fathers, and I'd been in bad shape since the start of July, so writing time and energy have been scarce. It won't get much better before fall.

I wrote last week about the possibility that I might have Lyme disease again (including a brief history of my previous bout of Lyme). We traveled to visit my Dad over the weekend (he's undergoing cancer treatments), and I was able to get in to see our Lyme doctor on Monday afternoon. He confirmed that I do seem to have Lyme again, both because I know how it affects me - and the symptoms were exactly the same as the last time - and because I responded very well to doxycycline. Within hours of my first dose, the then-excruciating knee pain began to subside. After a few days on the antibiotic, my energy was back, I was feeling good again, nausea gone, and knee pain almost gone except for a bit in the evenings. And after a week on doxycycline, all my symptoms were gone, and I was feeling quite good again, back to my normal baseline of energy and stamina (not great for a normal person but on the high side for someone with ME/CFS!).

He took some blood to run a few exclusion tests, just to be sure there's not anything else going on. Lyme testing per se is pretty useless at this point for me. I had Lyme for over 3 years before and never had a positive test result the entire time, which is not unusual. I asked him about testing for other tick-borne infections, but he quizzed me on symptoms and said that if I didn't have any of the symptoms and the doxy seems to be doing the job on its own, then co-infections aren't likely. If any new symptoms crop up, we'll consider that again (once again, the testing is unreliable so diagnosis depends primarily on symptoms).

I responded well last time - and so far this time - to doxycyline, so we're going to stick with that. He gave me a coupon for a new brand called Doryx where the doxy is all encapsulated in tiny capsules in the pill so that it doesn't upset the stomach the way generic doxy does and you don't have to worry about what you eat with it (iron, calcium, and magnesium all block the action of regular doxy). So, that's all good. Doxycycline does cause sun sensitivity, so I'll need to be careful the rest of the summer, but it didn't affect me too badly before at this normal dose - I only noticed that effect at higher doses, so we'll wait until summer is over to go up on the dose.

Meanwhile, I am pulling out all the stops to avoid another yeast overgrowth. I am already on a strict no-sugar, no grains diet, taking high-powered probiotics, and anti-yeast supplements. I doubled all of that, and increased my dose of oregano (an antibacterial, antiviral, and antifungal) by 4. He is hoping we can manage without prescription antifungals, but we'll see.

As for whether this is Lyme STILL or Lyme AGAIN, it seems pretty clear to me that this is probably a new infection. I haven't had any of the symptoms I associate with Lyme (knee pain, nausea, continual worsening of CFS) in the 4 years since I got rid of Lyme the first time. Research seems to back up that hypothesis: a fascinating study published in the New England Journal of Medicine of patients who'd had Lyme more than once showed that in all cases, they were new infections from different strains of Lyme bacteria. You might think that's a strange coincidence, the same person getting Lyme more than once, but it's really not. I live in the mid-Atlantic, which along with the northeast, midwest, California, and many other areas have rampant numbers of infected ticks now and practically an epidemic of Lyme disease. Just about every family we know in our area has at least one person who's had Lyme.

In fact, here's my public service announcement again:

ANYONE with CFS or FM (and especially those with joint pain) should be evaluated by a Lyme expert for ALL tick-borne infections. They are incredibly common all over the world, very hard to tell apart from CFS and FM if you don't know what to look for, and negative blood tests mean nothing since they are known to miss many cases. There's more information in this blog post.

As for me, I am feeling much better and hoping that will continue. I also hope that I caught it early this time so that my treatment won't take nearly as long as it did before.

Tuesday, July 22, 2014

Movie Tuesday 7/22

A Tale of Two Movies...It was the best of times, it was the worst of times...

Our teen sons are off on their annual week of sailing with their grandparents, so Ken and I are enjoying a quiet week to ourselves. We indulged in a couple of movies this weekend - one that was wonderful and the other - well, not so much.

First, we watched Saving Mr. Banks, a Disney movie about the making of Mary Poppins that is warm, touching, and funny. Full disclosure: I have been a huge fan of both the Mary Poppins movie and the original book since I was a little girl! In this movie, Walt Disney, played perfectly by Tom Hanks, tries to convince grumpy author P.L. Travers, played by Emma Thompson, to sell him the movie rights to her famous nanny. He invites her to Hollywood for two weeks, and attempts to woo her with all that Disney stands for, not realizing that she is not only immune to Disney's charms, she is downright disdainful of them. Interspersed with these scenes set in 1961 Hollywood are scenes from Travers' childhood in the wilds of Australia that show the origin of much of the basis for Mary Poppins' characters, including a painful though loving relationship with her father. The parts about her childhood are heart-warming as well as heart-breaking and also illuminating for Mary Poppins fans. And the Disney scenes of the writing and composing of the movie are clever and funny, filled with familiar lines and iconic songs you've known since you were a kid. The movie is based in part on actual tapes made of P.L. Travers' sessions at Disney (which she insisted on to ensure her wishes were not ignored). All in all, it is a delightful, touching two hours. Watch Disney's Mary Poppins first (unless, like me, you know it by heart) and then watch Saving Mr. Banks to get the most out of it (though it would even be enjoyable to those who've never seen the movie - are there such people??). I guarantee your next stop will be the library for the original book.

Last might, we watched Enemy, the complete opposite of Saving Mr. Banks! Jake Gyllenhaal plays two roles in this dark, creepy, very confusing movie. When the movie opens, he is playing Adam, a reclusive, shy, depressed history professor. When a colleague from work convinces Adam to watch a cheery DVD, Adam notices something that changes his life: he spots a bit actor in one scene who is his exact double. He does some digging online and finds the actor's agent and then his home address and tracks him down (yes, all a bit stalkerish). Once the two men meet face to face, the movie becomes very confusing. We often asked each other, "Wait, which one is this? The actor or the history teacher?" The whole thing is filmed with a sort of yellowish cast to the scenes, and much of the film moves at a slow pace, but with oddly discordant creepy music playing in the background the whole time. So, although it seems like not much is happening on the screen, the music makes you feel tense and full of dread. When the last scene came onto the screen, Ken and I simultaneously yelled, "What??" Then we spent the next 30 minutes trying to figure out what on earth really happened in the movie. Many online reviews suggested that if we didn't get it, it was because we weren't smart or sophisticated enough, and that it becomes much clearer on subsequent viewings. Not much chance of us watching it again! Though, it definitely did get under our skins and into our minds. For the past 24 hours, one of us keeps suddenly saying to the other, "OK, in that movie, why on earth...?" A lot of things just didn't make sense...and still don't! If you do decide to watch the movie, don't read online reviews first - there were lots of spoilers there.

Have you seen any good movies lately?

Monday, July 14, 2014

Lyme Again?

I think I may have Lyme disease again. I've been trying not to jump to conclusions, but I think it's time to face facts and start a trial of doxycycline to test the theory.

I have a complicated illness history that I will try to sum up briefly:

I suddenly became ill with ME/CFS in 2002. I know that wasn't Lyme because it took me a year to get an accurate diagnosis and during that year, one doctor misdiagnosed me with Lyme and tried treatments for several months with no change at all. Besides, CFS fit my symptoms much better, and I have improved over the years with the help of CFS treatments.

I have had Lyme, though. About 6-7 years ago, I had a sudden-onset of knee pain (after 6 years of CFS with no joint pain at all), plus nausea. In addition, all my usual CFS symptoms got much worse. I knew immediately this was something different and not "just" a CFS flare-up, though it took a few weeks to convince my doctor since my Lyme tests kept coming back negative (a common occurrence). I was treated with a variety of antibiotics and natural/herbal remedies for about 3 1/2 years, until I could stop the antibiotics without my Lyme symptoms coming back (general rule of thumb is at least 4-6 weeks of treatment past when symptoms clear up, but it took me much longer, probably because of CFS).

That was about 3 years ago, and I've been back to my CFS baseline since then, with improvements with various CFS treatments and little or no joint pain or nausea.

About a week ago, I noticed the achiness starting in my knees again, especially late in the day. Within a few days, nausea came back, too. My husband and I thought it was probably just a CFS flare-up because of all the stress and extra exertion in my life lately (see recent posts), but I spent the weekend just resting and was no better. In fact, I felt awful Sunday night - even after a 3-hour nap - and couldn't even stay on my feet to finish making dinner - horrible nausea and knee pain, my old Lyme buddies. I woke this morning feeling exhausted and couldn't get out of bed until a couple of hours past when I normally get up (mornings are usually my best time and I normally wake feeling good, thanks to treatments for sleep dysfunction).

So, I talked it over with my old Lyme doctor (who is still my son's Lyme doctor). He agreed that a trial of doxycycline should be able to tell me if my suspicions are correct. That's how I confirmed the diagnosis last time...I felt really great the first few days on doxy, all symptoms cleared up, and then felt worse (the herx reaction). So, I will give it a try and see what happens, being extra careful to guard against yeast overgrowth this time.

I am really upset over all this - I just do not need another thing to deal with right now - but waiting and resting seems to just be making me worse, so I need to see what happens.

If you want to know more about my past experiences with Lyme (and/or my son's), click on Lyme disease down below, where the labels are to see all posts related to Lyme.

And for more information on Lyme itself and why it is so hard to tell apart from CFS (and why testing is so unreliable), see this recent post on CFS and Lyme.

Saturday, July 12, 2014

Quote It Saturday 7/12

We've been back home for a few days now, though life is still very unsettled. My dad seems to have come through his cancer surgery fairly well and is recovering, though he still has a tough road ahead. We will probably go back to visit him again next week. We returned from our trip to help my father-in-law clean out his house to prepare to move out here near us, but the phone has been ringing constantly with calls from Oklahoma - real estate agent, estate sales people, concerned neighbors, and my father-in-law every 10 minutes or so, worrying about it all! Thankfully, my husband is handling most of that, and it looks like we might have a buyer for the house already, after less than a week.

So, just a brief quote today but one that is very relevant for me this week:
"But when we ignore the body, we are more easily victimized by it."
          - The Unbearable Lightness of Being by Milan Kundera
(you can read my review of the book here)

I wondered yesterday whether I had Lyme disease again because my symptoms were flared up so badly every evening this week. My husband pointed out that I have been under extreme stress this week, traveling and worrying about my dad, plus much more physical exertion than I am used to, cleaning out the house and then flying home (an 8-hour trip through 3 airports). After he calmed me down and I stopped panicking, I realized he was probably right and that I have been feeling fairly good in the mornings and then awful by late afternoon, which points to stress and exertion.

I have been ignoring my body lately and paying the price. I am trying to take it easier today. Thankfully, it is Saturday, so that means less running around for me. My husband kindly took our son to PT, stopped at the grocery store, and will run him to a friend's gathering later. Hopefully, a little rest and TLC will get me back in my normal shape.

Remember to take care of yourself! Hope you are enjoying a relaxing and restful weekend.

Friday, July 11, 2014

One Son Recovered?

Things have been crazy around here, with a visit to help my father-in-law sort through his house to get ready to move here and my dad having a 7-hour surgery yesterday as a first step to treating stage 3 melanoma. So, I am pretty exhausted and experiencing lots of stress.

But among all the bad stuff, we've had some good news, too. My 16-year old son has weaned himself off his Florinef (medication for Orthostatic Intolerance - OI) for the first time in 8 years, with no apparent ill effects! We tried the same thing last summer, but his symptoms flared up. So, after 8 years, he is now taking no Florinef, potassium, or salt tablets...and so far, he seems to be doing well. He's been very active - playing soccer, golf, biking, etc. in the summer heat, plus going to PT several times a week - and he's been feeling great.

His CFS has always been mild, and he fits the profile for those with the best chance of recovery (childhood onset, mild symptoms, up and down pattern, abrupt onset).

His symptoms began at age 6 (1st grade), at the same time as his older brother who was 10. Our younger son's symptoms were different, though, than mine or his brother's. His main symptoms were pain-related: chest pain, back pain, headaches, plus in his 6-year old words, "just feeling bad all over." He showed the classic post-exertional crashes and crashes when exposed to a virus but in between those bad periods, he felt fine. We talked privately to his pediatrician about our suspicions (by then his older brother and I were both diagnosed with CFS) but held off on officially diagnosing him - he was so little and still functioning well much of the time that we didn't want to saddle him with the label of being sick.

By spring of 3rd grade, he had missed over 35 days of school, and the principal called us to find out what was going on - at that point, his pediatrician ran all the necessary exclusion tests and officially diagnosed him with CFS. I had discussed his symptoms with Dr. David Bell (pediatric CFS expert, now retired) and Dr. Peter Rowe, pediatric CFS and OI expert at Johns Hopkins. They both thought that most of his symptoms were OI-related and would improve with treatment, so we started him on Florinef (our pediatrician worked with Dr. Rowe by phone, something he is still happy to do to help educate other doctors about CFS and OI in kids) which had helped out older son considerably.

The Florinef worked wonderfully - it cleared up all of his pain symptoms and greatly reduced the post-exertional crashes. On Florinef, he was symptom-free about 95% of the time and could do just about anything he wanted. He would still crash occasionally if he really overdid (we had an "only 1 sleepover in a row" rule!) and a cold might knock him out for a week or so, but otherwise, he has lived a fairly normal life from starting Florinef at the end of 3rd grade through the present.

He typically missed between 12 - 15 days of school each year for those occasional crashes but felt perfectly well the rest of the time. He's been playing soccer since he was 4 years old and has been on his school soccer team since starting high school, as well as a travel team this past year. He has had some injuries that sidelined him (he's hypermobile and prone to soft tissue injuries), but CFS/OI had little to no effect on his athletic life.

This past year, he missed only 3 days of school the entire year! That's a pretty amazing record for our household. And that included time out after a knee surgery. So, when he wanted to try going off Florinef again, we gave him the OK. He tapered off, as you're supposed to, and has now been completely off it for several weeks and is doing very well.

So, is he completely recovered? I don't think that's ever an easy question. He's definitely got Joint Hypermobility Syndrome, and he thinks he still has some mild OI symptoms. He says he sometimes gets dizzy if he stands up too fast or doesn't stay hydrated. But otherwise, he seems quite well. The real test will be starting school in the fall - going to school full-time and playing soccer two hours a day - but so far, so good!

That's your dose of hope for today - some people DO recover and it is possible.

Tuesday, July 01, 2014

Busy, Stressful Times

Hi, all. I apologize for the lack of posts here lately, so I thought I'd stop in to explain quickly. Things have been difficult and hectic around here. I've reverted to survival mode - make meals, check e-mail, get done what absolutely must get done.

We just returned from a last-minute visit to my hometown of Rochester, NY, to spend some time with my dad. He was recently diagnosed with stage 3 melanoma on his scalp. It has moved into the lymph nodes on one side of his neck but doesn't seem to have spread from there yet. It has been a shock for all of us, as he has been very healthy and doing well previously. He's going to have surgery next week - possibly multiple surgeries, depending on what they find when they get in there.

So, we drove the 8 hours each way to visit and spend some time with him. Soon, we will leave again on a long-planned trip to Oklahoma to visit my father-in-law, whom we are working on moving out here by the end of the summer. We will help him get some things done for the move and also visit with family coming up from Texas to see us while we're there. It's probably our last trip out there, so it's a big deal for all of us - our sons have grown up visiting there twice a year!

When we get back, we will probably make another trip up to Rochester, after my dad's surgery.

So, yeah, things have been pretty crazy here lately, and it's not going to get any better for a while! This week, I am focused on getting unpacked from one trip and ready for another, so I probably won't have much time for writing again. Physically, I am managing OK. I was exhausted this weekend because I don;t sleep well in hotels but am better now that I am back home.

I just wanted you to know I haven't forgotten about the blog - just distracted lately. I do have some posts in mind, when I can find time.

I saw this picture & saying on my aunt's fridge this weekend when we were visiting. She is the caretaker for my uncle who has some severe medical problems that cause issues similar to dementia, so she gets what this life is like. I am trying to remember this...hope you like it, too!

Saturday, June 21, 2014

Quote It Saturday 6/21

Happy First Day of Summer/Summer Solstice! It's actually dark, cool, and wet here today, but we had enough hot and humid earlier this week.

Last night, we went to a high school graduation party for a set of twins. One of them has ME/CFS and was mostly housebound a couple of years ago and the other is healthy, so this was an especially happy occasion. I often say that one of the biggest things I've learned in my 12 years of having a chronic illness is that everyone is dealing with some sort of challenges. Like ME/CFS, they may not always be visible, but everyone has something difficult in their lives to overcome: illness or injury to self or a family member, death of someone close, disabilities visible and invisible, financial problems. That was once again proven true to me last night, as we sat around a table with the parents of the twins (whom are good friends) and a bunch of people we didn't know. The evening began with typical small talk, but someone asked how we knew the graduates, and we mentioned our ME/CFS connection. That led to questions about ME/CFS and about Lyme, which our son has, and then some startling discoveries.

These other people around the table - who seemed totally normal and healthy - began to share their stories, too. One woman has had fibromyalgia for 20 years and a few years ago went to Pittsburgh for a 3-day trip and ended up spending 3 months in a hospital there. They discovered a brain tumor while she was visiting, then she had s stroke during the surgery to remove it. Another guy mentioned (casually) that his daughter was on a ventilator and how excited they were that she could now get by only using it at night. As I often say, when you meet someone, you never know what challenges they are dealing with beneath the surface. I think that's a good reason to treat everyone you meet with compassion and respect, even (especially?) if they seem rude or impatient.

Anyway, there is a connection here to a book quote! I recently read Velva Jean Learns to Fly by Jennifer Niven, a historical novel about a woman who becomes a pilot to help with World War II. My book group all enjoyed the book, and you can read my full review here.

In this passgae, the main character, Velva Jean, muses on exactly this topic of the baggage we acquire through life, as she meets an old friend and wonders about what he's been through:
 “The more things that happened to me, the more I thought it was like carrying a suitcase – you kept adding things to it, like your mama dying and your daddy going away, heartbreak over your husband, heartbreak over a boy that died. You just started adding these things to your suitcase until the case got heavier. You still had to carry it around wherever you went, and even if you set it down for a while you still had to pick it up again because it belonged to you and so did everything inside it.”

          - Velva Jean Learns to Fly by Jennifer Niven
In another passage toward the end of the book, she compares flying a plane to being in charge of your own life:
"If there was one thing I'd learned, it was that you were responsible for your own ship. You had to look after the engine and make sure the plane was in order and ready to be flown. You were in charge of plotting your course. When you were in the pilot's seat, it was your hand on the throttle, no one else's. If your oil ran out or you lost an engine or the engine caught on fire and you had to crash, you were the one saving yourself. No one else could do it for you."

          - Velva Jean Learns to Fly by Jennifer Niven 
 That is exactly how I feel about living with a chronic illness and the approach I have taken with my own illness. If you want to feel better and make the most out of your life, you have be in charge of your own health and be your own advocate. You have to learn about your illness - and sometimes even teach your doctor about it! In the case of ME/CFS, this means being very patient and persistent in trying various treatments, sticking with them through trial and error to find just the right combination for you, and even keeping up with recent research. It's hard to do all of this when you feel so terrible, but it's the best way to take charge of your life...and save yourself, as Velva Jean says.

Well, I hope you are enjoying your weekend, wherever you are!  

Friday, June 20, 2014

2014 Changes to Social Security Ruling for ME/CFS

I watched the CFS Advisory Committee (CFSAC)'s spring meeting earlier this week online, and one of the presentations I found most informative was about recent changes that have been made the US's Social Security Ruling for ME/CFS. Knowing exactly what is in the ME/CFS ruling will definitely help me when I reapply in a few years (I was awarded partial past benefits last year but nothing ongoing), though much will still depend on which adjucator and which judge you are assigned.

In the interest of being timely, I am going to mostly just paste my notes here that I took while I was watching the presentation, with a bit of extra explanation where needed. Please let me know if anything is unclear or if I got anything wrong. I tried to type my notes as I was listening/watching, so hopefully it is accurate, though I may have missed some points.

CFSAC Mtg 6/17/14
Social Security – New ME/CFS Ruling
Mark Kuhn – Social Security Administration

New ruling was effective April 3, 2104.

Replaces previous ruling – provides guidelines for adjudicators (those who review disability applications).

ME/CFS can constitute a Medically Determinable Impairment (MDI) and can be severe and disabling.

Adjudicator Considers:
  • Symptoms
  • Lab Results
  • Medical Signs

Sources for the revised ruling included:
  • CCC (Canadian Consensus Criteria)
  • ICC (International  Consensus Criteria)
  • CDC’s criteria (1994)
  • Past SSA experience

Symptoms (from CDC 94):
  • Profound fatigue 6 mos or more – persistent or relapsing
  • Memory or concentration problems
  • Sore throat/swollen glands
  • Muscle or joint pain
  • Unrefreshing sleep
  • PEM

Look for add’l symptoms (some of these are new):
  • Muscle weakness
  • Disturbed sleep patterns
  • Visual difficulties
  • Orthostatic Intolerance (OI)
  • Respiratory difficulties
  • Cardiac abnormalities
  • GI symptoms
  • Urinary or bladder problems

Require objective medical evidence to support doctor’s diagnosis:

Medical signs:
  • Swollen lymph nodes/sore throat
  • Tender points (from FM)
  • Frequent viral infections with prolonged recovery (new)
  • Sinusitis (new)
  • Extreme pallor (new)
  • Weight changes (new)

Laboratory Findings:
  • Elevated EBV titers
  • Abnormal MRI scan
  • NMH (new) – [my note: Oddly, they’ve included NMH here but not POTS – potentially a big problem for some patients]
  • Other findings, such as exercise test and sleep study (new)

Adjudicator should consider add’l findings as research continues to advance, for example elevated  HHV-6.

Look for co-occurring conditions such as:
  • FM
  • TMJ
  • IBS
  • IC
  • Raynaud’s
  • Migraines
  • Myofacial pain syndrome
  • Sjogren’s Syndrome
  • Chronic lymphocytic thyroiditis
  • New allergies or intolerances (new)
  • Sensitivities to noise, odors, chemicals (new)
  • Loss of thermostatic ability – chills, night sweats, intolerance of temps (new)

5-Step Evaluation for all SSD applications:
    1. Currently working?
    2. Severe impairment?
    3. Does impairment meet listing? (NO listing currently for ME/CFS)
    4. Can the person do past work?
    5. Can the person do any work?

There is no listing for ME/CFS which means that ALL ME/CFS applications will have to go through steps 4 and 5.…or could meet an existing listing for another condition, such as “undifferentiated or mixed connective tissue disease” under immune disorders listing.

A listing has the weight of law and takes longer to get through the system than this type of ruling. A ruling is binding for adjudicators but is not binding in a court of law.


Could this ruling be a first step toward a listing for ME/CFS?
Maybe someday– need more research and eventually testing that can prove ME/CFS and indicate severity. SS would move forward as soon as there is medical evidence to support a listing.

Numbers for those with ME/CFS who applied for SSDI and those who were approved at various stages?
No current data available. Past data has been presented at CFSAC and should be available on their website.

Is exercise test or neurocognitive testing sufficient to establish disability?
Those would be sufficient to establish MDI, but establishing degree of disability will still rely on steps 4 & 5.