Friday, October 31, 2014

Celebrate! Happy Halloween 2014!


Over the eight years I've been writing this blog, I have frequently written about Joy and celebrations. In the title of my blog, the emphasis is on the word LIVE - to not just get by or survive with this awful illness but to learn how to actually live your life and find joy in each day. I've covered many topics related to joy over the years (as you can see at the link), but one of the ways that my family continues to live our lives and experience joy, even at our worst times, is to celebrate all occasions, big and small.

The Super Family, 1998 (before ME/CFS)
My mom is the one who inspired me in this regard. When I was a little kid, we celebrated everything in a big way, from Valentine's Day to dance recitals to the major holidays. We picked up those traditions when we had our own kids and made lots of traditions of our own. Once the kids and I got sick, I found it was even more important to continue to celebrate, to lift our spirits and break from our routines. Halloween has always been one of our family's favorite holidays.

What could be more joyful than dressing up in a fun costume and going out trick-or-treating with friends? We did it every year, no matter how sick we'd been that fall, even if we had to adapt and make things easier. For instance, many years, I only went along with my husband and the boys to the few houses in our cul-de-sac. When they were younger and not feeling well, my husband sometimes pulled one or both of them in a wagon or even drove from one house to another.

Knight, Robin Hood, Little John & Maid Marion
For us, the preparation and anticipation of Halloween is almost as much fun as the actual event. We always decorate the house a couple of weeks ahead, with spiders and ghosts and skeletons and pumpkins. We have a clock that makes spooky sounds at the top of each hour (it drives my husband crazy but it's fun!) The week before Halloween, we make our annual trip to a local orchard to choose our pumpkin and come home to carve them. There have been years when we didn't have the energy to visit the farm and do the carving on the same day, but we still got to it eventually.

Dressing up in costumes is the best part! We would usually come up with a family theme, as you can see here (typically based around whatever one or both of the kids wanted to do), and work on our costumes for a week or more before the big day. I can't sew at all, so we got creative with old clothes, colored t-shirts or sweatshirts, and plenty of fabric glue and face paint! As recent as last year, our teen son and his friends were still raiding the old dress-up box in our basement for Halloween!

Star Wars Family
Our son are now 16 and 20 and no longer trick-or-treating, but they still celebrate. Our college-aged son is having a party tonight with his friends at their apartment, and he's been working on his Joker costume for weeks - that's our boy! Whenever he has had extra energy between classes, he's been hunting through Goodwill for clothes, learning how to use fabric dye, checking pictures of the Joker online, and working on the costume. I'm so proud.

Back here at home, my husband and I miss the days of dressing up with the kids and trick-or-treating, but we still decorated the house this year and enjoyed carving pumpkins with the whole family last weekend. Tonight, we'll greet the trick-or-treaters at the door and hand out candy, though my days of sneaking tastes are sadly behind me now that I'm struggling with yeast overgrowth. I do have some sugar-free treats for myself, though! We'll watch some spooky TV shows tonight - I always enjoy the Halloween episodes that many shows do this time of year. I've also been reading spooky/creepy books all month to get in the spirit.

Rock Band, 2010
So, wherever you are and whatever your limitations, find a way to celebrate, both today and for all holidays, big and small. Even if you are bedridden, watch some Halloween-themed TV shows or movies or read a spooky book. If your kids are the sick ones, still help them plan a costume and dress up. If they're too sick to manage trick-or-treating, even to a few houses, then set them up at the door on an outdoor lounge chair in their costume to greet the trick-or-treaters who come to the door. Carve some pumpkins and roast the seeds (yum). Find ways to join in the celebration and bring some extra joy into your life.

Happy Halloween!

Tuesday, October 28, 2014

New Survey on LDN for ME/CFS Seeks Patients

Finally! Someone is undertaking a case study/survey to document how low-dose naltrexone (LDN) can be helpful for those with ME/CFS...but she needs our help!

Monica Bolton, an ex-doctor and ME/CFS patient who responded well to LDN, is gathering examples and case studies of ME/CFS patients who've had success with LDN. As she explains on her website, we can't even hope for a scientific study to prove the efficacy of LDN in ME/CFS until we bring it to the attention of the medical community. Currently, there is not one single example in the medical literature of using LDN for ME/CFS, so mainstream doctors are understandably reluctant to prescribe it.

My son and I have benefitted greatly from LDN. I've taken it for about 7 years now, and with some recent changes to my dosing, it is still helping me - with increased energy, reduced fatigue, and overall improvement in symptoms.

So, if like me, you've taken LDN for ME/CFS and have had some improvement with it, please help Monica help us by taking a few minutes to complete her survey - I'm doing it!

You can visit her website for more information or e-mail Monica to get a copy of the survey.

This is a great chance to participate from your beds and couches and help move ME/CFS research forward!

P.S. If you haven't tried LDN yet and want to know more, my blog post contains lots of links for more info, and Monica's site at the link above also contains some great information.

And if you have fibromyalgia, there HAS been a scientific study on use of LDN for fibro - conducted by Stanford.

Saturday, October 25, 2014

Lactose in Medications


Many people with ME/CFS are dairy intolerant – it’s our immune system dysfunction that makes our bodies over-respond to viruses and allergens. And if you’ve never even considered food intolerances, you should because they are so common in those with ME/CFS, and finding the culprits can greatly reduce GI symptoms.

In my case, I thought the very idea was ludicrous. I was 37 when I got ME/CFS and had lived my whole life without any food intolerances or allergies (except an allergy to mollusks that I’d had my whole life) and habitually drank 3 glasses of milk a day. But when Dr. Bell, a now-retired doctor who was one of the top ME/CFS experts in the world, suggested I try eliminating dairy from my diet for a few weeks, I reluctantly agreed. I was in for a surprise.

I didn’t notice much difference in those first weeks, but when I started to add dairy back into my diet, bam! My GI symptoms flared up with a vengeance! Much as I hated to give up milk, cheese, and ice cream, I did and was surprised to find that one simple step almost completely eliminated my GI problems – excess gas, bloating, classic IBS-type alternating constipation/diarrhea – all gone. That was more than 10 years ago, and over the years I’ve learned that it’s best for me to avoid all dairy – when I start “cheating” here and there, my symptoms start to return.

There are two common sources of dairy intolerance: lactose, a sugar found in dairy products, and casein, a protein in diary products. If your problem is only lactose, then over-the-counter products like Lact-Aid (which supply the lactase enzyme your body is missing) can allow you to eat dairy products without any problems. In my case, Lact-Aid helps a little bit but doesn’t eliminate the symptoms completely, so I have guessed that both lactose and casein are a problem for me. More recently, our dietician explained that casein (along with gluten and gliadin in oats) blocks one of the methylation pathways, and that provided another reason to avoid dairy.

So, I don’t eat dairy products, and I feel a lot better – simple, right? Except that I discovered a stealthy source of lactose in my diet that I never expected – many medications, both prescription and over-the-counter – use lactose as a filler. It makes no sense to me – why on earth would pharmaceutical companies use an “inert” filler that so many people are intolerant to? But it’s true, and once I discovered this startling fact, I began to find more and more medications containing lactose. You might think the amount of lactose in a pill can’t be very much, so why worry about it, but if you are very sensitive or you take multiple pills containing lactose, then it does make a difference.

In some cases, there are alternatives that don’t contain lactose; in other cases, there are no lactose-free options. But I have found that eliminating as much of the lactose in medications as possible from my lengthy list of medications has further helped to reduce my symptoms.

Here is a partial list of medications that contain lactose and (where available) some lactose-free alternatives:
  • All birth control pills contain lactose, no exceptions (thankfully, these are tiny pills).
  • All commercial Florinef (fludrocortisone), used to treat OI, contains lactose; however, you can order lactose-free Florinef from a compounding pharmacy.
  • OTC Zyrtec white pills (for allergies) contain lactose, as do all the generic equivalents; however, you can buy Zyrtec-brand gel caps with no lactose.
  • Diflucan (fluconazole), generic (antifungal) – some contain lactose and some don’t. So far, we’ve discovered that those manufactured by Ivax contain lactose; those manufactured by Greenstone do not.
  • Trazodone generic (used to treat sleep dysfunction in ME/CFS) – manufactured by Qualitest contains lactose; those manufactured by Apotex do not.
  • Doryx, a new brand of doxycyline, does contain lactose; Monodox brand and certain generic brands of doxycycline do not. 
These are just the ones we’ve discovered! As you can see, sometimes, it’s hard to tell because one brand will contain lactose and another won’t and they may look very similar. So, what can you do?

For starters, call your pharmacy and tell them you are lactose intolerant. Ask the pharmacist to review your entire list of medications to check for lactose in them. I’ve found that they are usually happy to do this and then they can put a note in your file for future reference. However, you still need to remain vigilant yourself.

Many of those listed above that contain lactose, I discovered when we received a refill from the pharmacy that simply looked different than what we were used to – that’s how I first discovered that some manufacturers use lactose while others – for the same medications – don’t. So, if your pills ever look different than what you’re used to (after the pharmacist has reviewed all your meds), that is a warning sign to call and ask if the new version contains lactose. And if you get any medications from a compounding pharmacy (like low-dose naltrexone, for instance), be sure to specify “no lactose filler” because they sometimes use it, too.

The way pills look can be a clue, though it’s not foolproof. Typically, pills that contain lactose will be white tablets or caplets (or white underneath and coated with a colored surface). Gel caps and capsules are usually lactose-free. My Lyme doctor recommended a new brand of doxycycline called Doryx that was supposed to be more effective (he had coupons from the manufacturer so I could get it at low cost). I picked it up at the pharmacy and knew right away that it probably had lactose in it – they were huge white pills! I checked and confirmed they did contain lactose, and I switched back to Monodox (that I also had a coupon for) – nice, safe capsules.

Finally, you can check for yourself online. Type the name of your medication, the manufacturer, and the phrase “inactive ingredients” into any search engine, and you’ll find pages that list all of the inert ingredients in your pills, including lactose, if it’s there. For supplements, the list of inactive ingredients should be right on the label, though you can check online, too.

So, check out your list of medications, if you are lactose intolerant (and if you aren’t sure if you are, then try a trial of dairy-free diet for a few weeks). Talk to your pharmacist and be on the lookout for lactose in all of your medications, both prescription and over-the-counter. It can make a difference to your symptoms and overall well being!

Do you know of other medications containing lactose that I haven’t mentioned here?

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