Saturday, November 22, 2014

Contribute to ME/CFS Research While Shopping!

With the holiday shopping season fast approaching, remember you can contribute to ME/CFS research WHILE doing your online shopping!

Since getting sick almost 13 years ago, I've had to switch to mostly online shopping, so I was thrilled to discover that I could contribute to my favorite charities while shopping! It costs you nothing extra - the online stores have agreed to contribute a percentage of each purchase (the amount varies by store) to the charity of your choice.

Here are my two favorite ways to contribute while I shop - your first step should be to select your charity, then start shopping! Let me know if you know of others:
  • iGive.com - click on "Stores" to find your favorite stores (or browse through their categories to discover new ones); click on "Causes" to select the charity you want to contribute to. I contribute to Solve ME/CFS Initiative (formerly the CFIDS Association) - my header on iGive says I have contributed $176 so far, and the Solve ME/CFS Initiative has gotten over $6000 so far from all shoppers!
  • GoodShop.com - works similarly - choose your charity and start shopping!
(I had trouble with with search function on GoodShop, so if you are looking for a particular charity there, you might try typing its full name in or searching alphabetically)

BONUS! From now through December 15, iGive will donate an additional $5 for every new member who joins - just use the link above.

There are plenty of ME/CFS charities to choose from, including:
  • Solve ME/CFS Initiative 
  • Fibromyalgia-ME/CFS Support Center
  • CFS Foundation
  • National Chronic Fatigue Syndrome and Fibromyalgia Association
NOTE: Not all of these use their funds for research - some sponsor support groups or focus more on awareness.

The Solve ME/CFS Initiative has its own list of ways to "shop & give" this holiday season, including handcrafted items, ME/CFS awareness items, and ways to donate your eBay proceeds.

Have fun shopping...and helping ME/CFS organizations at the same time!

Tuesday, November 18, 2014

Movie Monday 11/17

Oops...it's Tuesday already. But I didn't want to miss the opportunity to tell you how much I enjoyed watching a classic this weekend:

My husband and I watched Rear Window, the classic suspense film from Alfred Hitchcock. Confession time: this was the first Hitchcock movie I have ever seen! Can you believe it? My husband had seen this one before but happily watched it again. Jimmy Stewart stars as L.B. Jeffries, a photojournalist with a broken leg who is stuck in a wheelchair in his tiny apartment during a heat wave. He can't wait to get back on the road with his camera, and is horribly bored. Only visits from his nurse and his wealthy & fashionable girlfriend, Lisa (played by Grace Kelly), break up the monotony. In between their visits, he amuses himself by watching his neighbors through the rear window. He lives in a courtyard apartment, so there is plenty to watch across the yard. He even makes up silly names and stories for some of his neighbors. One day, though, he sees some unusual behavior across the way from a traveling salesman whose invalid wife is suddenly absent. L.B. guesses (half jokingly) that the man killed his wife and chopped her up. As the days pass, though, events in that apartment seem stranger and stranger, and L.B. even gets Lisa and his nurse in on the guessing game and amateur sleuthing. The question is: is this another of L.B.'s silly stories or did a murder really take place? The movie starts out slowly, but the suspense builds right up to the end and kept me guessing. I really enjoyed seeing these famous Hollywood stars and was surprised to see how well the old film holds up. I definitely want to watch more Hitchcock classics now! My husband says Vertigo is next.

NOTE: When I looked up Rear Window to grab the photo above, I discovered that the movie was remade in 1998, starring Christopher Reeve (post-accident) as the man in the wheelchair. It's rating wasn't nearly as high as the original, but it might be fun to watch it and compare the two (besides, I love Christopher Reeve).

Have you seen any good movies lately? And which Hitchcock film is your favorite?

Sunday, November 16, 2014

The Battle Continues

Just a quick update since I haven't been posting much here recently.

I haven't felt well (or at least, my normal baseline) since mid-September. Back then, you may recall, I ended up with bronchitis. The usual 5 days of Zithromax didn't do the trick this time - my bronchitis actually got worse and began to develop into pneumonia, so the doctor put me on a stronger antibiotic, Cipro, for another week. That finally got rid of the bacterial infection but left me struggling once again with yeast overgrowth.

We know a lot about yeast problems in our house - we've fought this battle many times before! So, from the time I started the first round of antibiotics, I was already on a super-strict diet and taking loads of extra-strong probiotics and all the antifungal supplements in our arsenal. None of that mattered - I still developed yeast overgrowth.

This has been a stubborn case. I've been taking prescription antifungals for about 6 weeks now, and I still have some visible thrush in my mouth. Worse are the immune systems - terrible aches all over, every day.

To make matters worse, I've been extra busy around here: running my car to the shop and the DMV to try to beat my re-registration deadline (I thought I'd left plenty of time until my car failed inspection the first time!), driving all over town taking my father-in-law to doctor's appointments, plus my own commitments. So, bottom line - it's just been a really difficult couple of months.

My doctor saw me again Friday and switched me to a stronger antifungal med, alternating days with the one I've been taking. I hope this works because I've been feeling so frustrated and fed up with all this. I also have a cervical biopsy scheduled for Tuesday after an abnormal Pap smear, so I've been worried about that (I went through the same thing about 10 years ago and it turned out fine, but now I know how much the biopsy hurts!). All of this just has me feeling like I'm on the edge of an emotional breakdown - you know what I mean? Sometimes with this illness, you just feel like you can't take anymore.

I've been planning to write an in-depth blog post on yeast overgrowth/candida, but I keep waiting until I resolve my own problem so I can write about what finally worked - no luck so far! In the meantime, if you are also struggling with yeast problems, you can check out this older post on yeast overgrowth for some information.

Hopefully, these new meds will finally do the trick. I'll keep you posted. Wish me luck!

One joy lately: the brilliant fall colors! I hate to see them go.

Monday, November 10, 2014

Movie Monday 11/10

My husband and I enjoyed a rare quiet, relaxing weekend! Our son was out of town, and we ignored the never-ending to-do lists and just took it easy for a change. We took a walk together on a lovely fall day, started a jigsaw puzzle (it's been years since we've done that!), read good books, met friends for dinner, and enjoyed a really good movie:

Nothing quirky this week - we went for a mainstream hit that got great reviews: Begin Again, starring Mark Ruffalo, Keira Knightley, and Adam Levine, in a musical romantic drama/comedy that doesn't fit the usual genres. Ruffalo plays Dan, a music executive who used to be on top but is now struggling (and often drunk). One night, Dan hears Gretta (played by Knightley) singing in a bar and is blown away by her original song and her voice. He convinces Gretta to embark on an ambitious project with him. Gretta is still getting over a betrayal by her boyfriend Dave (played by Levine) who is now off making a name for himself as a singer/songwriter, in what Gretta had assumed would be a partnership. The project that Dan and Gretta take on gives them both a fresh start (hence the title). The plot description alone doesn't do this movie justice because its magic is in the actors and music (and the script is great, too). Ken and I both really enjoyed the film; it's uplifting and full of hope and will leave you tapping your feet and singing along...and believing in second chances.

I enjoyed the music so much that I listened to some of the songs on YouTube today, like this one sung by Keira Knightley (she really did her own singing in the movie and is surprisingly good!):



The video includes scenes from the movie. I liked the music so much that I plan to buy the soundtrack.

Have you seen any good movies lately?

Friday, November 07, 2014

Claim Your Illness Experience, Don't Let It Claim You

I like to start my morning by listening to a TED talk while I eat breakfast - something funny or enlightening or inspirational. This morning, I cam across a talk by a cancer survivor that really hit home.

Though her own bad experience was cancer, she is talking about bad, life-changing experiences in general here - whether it is cancer or rape or an unfair firing....or illness, in our case. And although, we don't usually recover from ME/CFS or become "survivors," a lot of what she discusses here is very relevant to us. The one line she repeats often in this talk is:

"Claim your bad experience; don't let it claim you."

She talks about the dangers of defining yourself by these bad experiences. No matter how sick we are and how limited in our lives, we can still define ourselves by our roles and passions, beyond just being sick. I love her opening question about defining yourself. So, check it out for yourself - it's a short talk, only 16 minutes long:



Oh, and the bit about cancer awareness panties alone is worth a good laugh, at the very least!

She's given me a lot to think about, including how much time I spend every day immersed in our world of illness. Hope you find it just as thought-provoking as I did!

So....three things that define me: I am a writer, a book lover, and a parent.

Wednesday, November 05, 2014

The Perils of Traveling with ME/CFS

In front of Jackson Square, our first day
On September 30 this fall, my husband and I celebrated our 25th anniversary. We had planned a long weekend trip to New Orleans, where we used to live when we first met, dated, and married. We were excited about the rare getaway on our own, but I was also very anxious about various aspects of the trip and worried about how I would handle it all. I've written previously here about my strategies for managing air travel and about how well I usually do on our annual summer camping vacations, but I knew that a city vacation had its own unique perils. To make matters worse, I hadn't been feeling well during the two weeks before our trip - not totally crashed but not good either. As is sometimes the case, whatever could go wrong did! Here are some of the things I was concerned about and what worked (and didn't work) on our trip....and some of the things that went wrong that I hadn't anticipated!

Exertion/Exercise
Plain and simple, the biggest worry of all for those of us with ME/CFS, no matter where we go. In this case, I was particularly worried because New Orleans (and most cities, I suppose) is a walking city. 

As I knew would be the case, we did a LOT of walking - we walked to meals, wandered the French Quarter, walked while shopping and sight-seeing. We occasionally took taxis and used the streetcars a few times (a lovely form of transportation in New Orleans), but we still did a lot of walking. I knew, based on how I'd been the previous two weeks, that I was doing too much, but I felt like it was our 25th anniversary. I wanted the trip to go well, and I didn't want to ruin it for my husband.

Nightlife
Ha! What's nightlife for someone who goes to bed by 10 pm every night? Yet, New Orleans is a city for night owls. Walking around the French Quarter, we passed a nightclub (and I use the term loosely) called The Dungeon where we used to go with friends many years ago. It doesn't even open until midnight! So, yeah, that was out. There are a lot of live music venues in the Quarter, but most are crowded, many are standing room only, and all are very noisy. Thankfully, my husband didn't want to put up with the loud noise, either, so that worked out OK. Most evenings, after dinner, we just walked around a bit, peeking into shops, taking in street performers and the other (ahem) sights of Bourbon Street, but I couldn't handle much walking at that time of night.

One thing we did that worked out great was to visit Pat O'Brien's famous piano bar. We went in at about 8 pm, so there was no line (a benefit of going to bed early!) and got a seat at a crowded table right near the two pianos. No, I didn't order any Hurricanes. But I did come up with a brilliant idea, since I can't have alcohol, caffeine, or sugar, which leaves me without many choices in a bar! I ordered Bloody Mary mix without the vodka - I not only had a fancy drink to sip on, but tomato juice is loaded with sodium, so it was helping my Orthostatic Intolerance as well!

We had a blast at the piano bar. They played and sang a wide variety of music, everything from 70's ballads to 80's rock to current pop songs, with a smattering of oldies and classic New Orleans' tunes. We had a lot of fun singing along. I was starting to wear out after about an hour, but we stayed for almost 90 minutes.

And as for being back in our hotel room by 9 (sometimes 8:30) every night? I apologized to my husband for being such a party pooper, but he reassured me he was worn out and ready to go back, too!

Medications
You would think that after 12 years of living with this illness and taking piles of pills every day, it would be impossible for me to forgot my medications. But apparently, it's not. Despite my repeated checks before we left home that I had all my meds packed in my carry-on, plus all the over-the-counter stuff I might possibly need, when we arrived at the hotel, I realized I forgot the most important medication box that I have: my bedtime meds. These include the medications I take to correct sleep dysfunction, allowing me normal, refreshing rest at night (extra important on a trip); my beta blocker that keeps my heart rate down to normal levels so I can walk and be active without crashing; and my birth control pills which hold my hormone levels steady to prevent migraines, as well as the obvious function of preventing my period (which makes me crash). I was panicked - a 4-day trip without those essential medicines would be a disaster.

So, we spent much of the first 24 hours of our anniversary trip trying to replace my meds. During our first dinner out, I had to excuse myself to talk to the doctor on call to explain my predicament. Of course, it was a Saturday night, so there were no pharmacies open until 10 am the next day. The next morning, I was on the phone again, back and forth with the doctor and the pharmacy. I had to wear my heart rate monitor and be careful, as without the beta blockers, my heart rate was much higher than normal.  Finally, my meds were ready to pick up...but they were out of stock of one of them which had to be ordered from another Walgreen's. We took a cab to that drugstore and finally - around noon on Sunday - had all my meds again and were able to resume our vacation. But the damage had been done - a night without good quality sleep and hours of walking without beta blockers had already taken its toll.

Food
One of many amazing meals!
Food, oh, the food! This is one of the primary reasons to visit New Orleans, and we had many favorite restaurants we wanted to visit. Seafood, desserts, local specialties - there is just so much to enjoy there! I am dairy intolerant and have been on a Paleo diet (no grains, no dairy, little sugar) since February. In some places, especially with main courses, it was easy to stick to my dietary restrictions - fabulous fresh fish or shrimp with local vegetables or a salad is what I would have ordered anyway. When it came to dessert, I threw all the restrictions right out the window. That double-chocolate caramel bread pudding the first night was well worth the stomach upset later! For our anniversary dinner, we treated ourselves to a superb restaurant that we went to when it first opened 24 years ago. We thoroughly enjoyed the food on our trip, though I'm sure ditching the diet (and especially the sugar and dairy restrictions) contributed to my growing exhaustion and my later problems. I did really miss sampling all the fabulous beer and wine in New Orleans, though, especially since I was young and healthy when we used to live here - it was hard to compare my current circumstances with the times we used to spend in these places, before ME/CFS, and sometimes a bit depressing for me.

Unforeseen Circumstances
All of these were things I'd more or less foreseen and/or worried about, but by Monday, another common travel issue took me by surprise. I woke up Monday morning with a tightness in my chest and a mild cough. For me, that means just one thing: bronchitis. The classic immune dysfunction of ME/CFS makes me extra-susceptible to bacterial infections, and those symptoms ALWAYS lead quickly to bronchitis for me. I don't know whether I picked up a germ on the plane on the way down or already had it in my system when we left home, but by the time we flew back on Tuesday, I felt truly awful, with chest congestion and a cough, coupled with crushing exhaustion and aches. I ended up with an extra-nasty case of bronchitis that didn't respond to the first round of antibiotics and turned into pneumonia. I finally got rid of those infections a few weeks ago but then was left with a bad flare-up of yeast overgrowth from the antibiotics - despite taking all kinds of precautions - that I am just now recovering from six weeks later.

So, all in all, it was a difficult trip for me, though there were certainly things that I enjoyed. It was good to be back in our favorite city but also hard for me to be there as such a different person than I used to be. Travel is difficult under the best of circumstances, and several things on this trip went wrong. I definitely do better on our camping road trips, where we bring our own little home on wheels with us and go at our own pace. We have wanted to go to Europe for years (though we can't afford it right now because all our money goes to medical expenses!), but this short trip to New Orleans reinforced to me how difficult it is for me to travel in this way - airplanes, cities, hotels, walking, etc.

What have been your experiences with travel? Do you have any tips for making things easier?


Our 25th anniversary dinner at Bayona, an old favorite

Monday, November 03, 2014

Movie Monday 11/3

I've had a rough couple of weeks (more on that in another post), so I got a bit behind here at the blog recently. These past two weekends, my husband and I watched two movies on DVD, both what he called "quirky," which isn't usually a compliment coming from him! But he liked them OK, and I enjoyed both. Nothing too weighty here - just some light-hearted fun:

Last weekend, we watched The Grand Budapest Hotel, a Wes Anderson film. Anderson is known for quirky, with movies like Rushmore, The Royal Tenenbaums, The Life Aquatic, and The Darjeeling Limited. This movie is no exception and has a brightly-colored, slightly fake look to it, like a sort of simulated reality - if you've seen any of the aforementioned films, you know what I mean. His movies are also known for a dark humor and somewhat farcical quality, also evident here. So, the plot centers on a grand old hotel in the Alps during the 1930's. Gustav is the hotel's venerated concierge, whom is responsible for the impeccable service that its customers come to expect. His protege is a young Lobby Boy in training named Zero who wants to be just like Gustav. When an elderly woman who is a frequent guest dies and leaves Gustav a priceless painting, the woman's greedy family suspects foul play and sends one vicious family member (played by Willem Dafoe) after him. What ensues is a madcap race across the continent, including an ingenuous escape from prison and assistance from Zero and a network of other high-end concierges. All of this takes place in that over-saturated colorful, fanciful style that Anderson is known for. I went along for the ride and enjoyed the fun.

This weekend, we watched Dom Hemingway, a movie that had been previewed on the Grand Budapest Hotel disc (by the same production company but a different director). The lead role of Dom is played by Jude Law, "as you've never seen him before," according to the promo (which is quite true!). He plays a street criminal in London who's just been released from prison after a twelve-year stay. He has two main goals: to get the money due to him from his last crime (and from keeping quiet all these years) and to reunite with his daughter. He acts as you might expect a criminal released from prison to act, going seriously overboard with alcohol, drugs, and women. As he tries to get his money, though, he runs into one roadblock after another. As for his daughter, she wants nothing to do with him. This movie also has a somewhat farcical quality to it, as one thing after another goes wrong for poor Dom. He's a despicable character - violent and foul-mouthed - but somehow likable, too, and you can't help rooting for him when nothing seems to go right. His efforts to win back his daughter bring an element of heart to the movie. Again, I really enjoyed it - though be warned that it is not for the faint-hearted!

Have you seen any good movies lately?

Saturday, November 01, 2014

Quote It Saturday 11/1

In this occasional feature, I choose a quote or two from a book that has relevance to those of us living with chronic illness.

Frankenstein doesn't sound like it would be a good source for inspirational quotes, but I read the classic by Mary Wollstonecraft Shelley this month for Halloween, and I discovered it is a very thoughtful and thought-provoking novel, more focused on human nature than on monsters. You can read more about it in my review.

Two quotes in particular caught my eye, one dealing with sorrow and one with joy:

"Heavy misfortunes have befallen us, but let us only cling closer to what remains and transfer our love for those whom we have lost to those who yet live. Our circle will be small but bound close by the ties of affection and mutual misfortune. And when time shall have softened your despair, new and dear objects of care will be born to replace those of whom we have been so cruelly deprived."

          - Frankenstein by Mary Wollstonecroft Shelley

Although in the book, he is talking specifically about losing loved ones, I think the sentiments apply equally well to other kinds of losses, like losing our former occupations or favorite activities to illness. Time does indeed soften our despair, and new interests - reading, blogging, knitting, etc. - may come to replace those other things we've lost. And I love the line about "bound close by the ties of affection and mutual misfortune" - that perfectly describes the closeness we often gain from our new friends (often online friends) whom share our illness.

And, now joy:

"When happy, inanimate nature had the power of bestowing on me the most delightful sensations. A serene sky and verdant fields filled me with ecstasy."

          - Frankenstein by Mary Wollstonecroft Shelley

I love that line, and it perfectly describes my own feelings about nature. Lying out on my back deck, looking up at blue sky, fluffy white clouds, and the gorgeous colors of fall can fill me with unbridled joy, even on a bad day. I was feeling pretty awful most of the last few weeks. Last Tuesday, my husband took over most of my responsibilities, but I still managed to drive out to the local farm to pick up our weekly veggies. It was a perfect fall day, sunny and in the 70's, and the 10-minute drive in my VW convertible, amid the fall colors, lifted my spirits more than I thought possible.

If you'd like to know more about this classic novel and its philosophical bent, you can read my review on my book blog.

Hope you are enjoying a wonderful weekend!


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

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.