Saturday, December 20, 2014

Weekly Inspiration: Slow Down!

Did you know there's a whole Slow Movement going on? People advocating Slow Food, Slow Schools, and just generally slowing down your life. As technology continues to speed up our lives, this idea is becoming less fringe and more mainstream.

Those of us with ME/CFS were way ahead of the trend! Our lives are all about slowing down. Interestingly, I actually left my travel-heavy career two years before getting sick, in an effort to slow down our lives with two small children. Ironic, right? About the time I was considering going back to work part-time to bring in some income, ME/CFS came along and slowed me down for good.

But if you're like me, our fast-paced modern world still sneaks into my life (especially my online life), and I still battle some bad habits from my pre-illness days. In fact, while listening to this TED talk about slowing down to enjoy life more, I realized I was seriously multi-tasking, eating breakfast while making a grocery list while watching a talk on slowing down! Yes, I see the irony.

I really enjoyed this short talk - the presenter makes some excellent points, and I loved the story about reading to his son and their relationship. In this hectic holiday season, I think we can all use a reminder to set aside the electronics, slow down, and enjoy our families:



Hope you are enjoying the holiday season with your family!

How do you slow down and make time for family?

Wednesday, December 17, 2014

$500,000 Reserach Grant for ME/CFS Epigenetics Study

Great news for the new year!

The Solve ME/CFS Initiative (formerly the CFIDS Association) has been granted $500,000 to further the study of epigenetics (basically how our genetic profile interacts with our environment and affects us) in ME/CFS. They are partnering with well-respected ME/CFS clinician and researcher Lucinda Bateman and her Fatigue Consultation Clinic and also Patrick McGowan of the University of Toronto to further the epigenetic research they began in 2012.

You can read all about the details in this Solve ME/CFS Initiative blog post.

What a wonderful way to start a new year!

Tuesday, December 16, 2014

Movie Monday 12/15

We watched two holiday movies last week, both modern classics, as well as starting in on our collection of classic children's Christmas specials on VHS. My college son is home with mono and his younger brother has a concussion and can only watch a small amount of TV, so the familiar, short Christmas specials are just right for him.

I finally convinced my older son to watch Love, Actually, which is one of my favorite holiday movies - and also one of my all-time favorites generally. He wrinkled his nose and said, "It's a romantic comedy," but I explained it's really about all kinds of love including a father and his stepson, brother and sister, and even long-term friendship. Mostly, I think he agreed to it because I was upset that night - had a bit of a meltdown from all the stress lately - and he was humoring me. But, of course, he ended up loving it! You just can't help but love this feel-good movie. It takes place at Christmas time and involves a huge all-star ensemble cast (it was the first movie to take this approach of multiple, intersecting storylines peopled by big stars and has been much-copied since). It moves back and forth between different storylines, all involving some form of love, gradually surprising you with how some of them are connected. So, Hugh Grant plays the new Prime Minister of Britain who has a crush on his assistant, while Bill Nigh is fabulous as an aging pop star who is hoping that the horrible Christmas version of his big-time pop hit will be the #1 holiday song on the radio. Liam Neeson plays a recent widower trying to connect with his grieving stepson (who has his own first crush). Emma Thompson plays a busy mother whose husband is considering an affair. Keira Knightley plays a newlywed who wonders why her husband's best man doesn't like her. And Colin Firth is a jilted lover who escapes to a quiet country house in France to work on his suspense novel and forget about love. I've tried not to give away any of the surprises in this summary because that's half the fun. There are some sad points in the stories, but mostly, it is a joyful, fun movie with lots and lots of laughs. My son loved it, and I exchanged my depressed real-life tears for happy movie tears, even though I've seen it several times before. This is the ultimate uplifting holiday movie.

I also convinced both of my sons to watch a holiday movie from the 80's with us, Trading Places (are you seeing a pattern here? At ages 20 and 16, my sons usually meet any suggestion mom makes with eye rolls!). They were both sick and bored enough to give it a try. If you've never seen it before, Trading Places is a comedy starring Dan Akroyd, as a wealthy young man rising to the top of his stock trading firm, and Eddie Murphy, as a disadvantaged small-time con man who lives on the streets. Through some unusual circumstances, the two trade places, and it doesn't take long for Murphy's character to adjust to the good life and Akroyd's character to hit bottom. Jamie Lee Curtis also appears - wonderfully - as a hooker with a good heart and big dreams. Oh, and it takes place at Christmas time, so that's the holiday connection. It's all good fun, with plenty of laughs and a happy ending.

So, those are two good movies to watch this time of year, if you are looking for some light, uplifting holiday cheer (note that both are rated R so are not for younger kids).

Have you seen any good movies lately? What are your favorite holiday films?

Thursday, December 11, 2014

Weekly Inspiration: The Art of Stillness

I enjoy - when I can find the time - inspirational videos or essays, and whenever I post one here on my blog, I get plenty of positive feedback. So, I thought I'd start a weekly feature, Weekly Inspiration, which will not only allow me to share these inspirational pieces with you, but will also ensure that I take a bit of time to myself each week to find and enjoy something inspirational.

I often find my best inspiration among the large library of TED talks, and this week is no exception. I listened to a talk by Pico Iyer, a travel writer, on The Art of Stillness and knew immediately that I wanted to share it with my blog readers.

Now, you may think this sounds a bit silly. Who knows more about stillness than those of us with ME/CFS, forced to rest every day and spend much (or all) of our time lying down, in bed or at home. But he is talking about mental stillness, not necessarily physical stillness.

I don't know about you, but my life has changed dramatically over the last 5-10 years. I find I am now constantly on my laptop, on the internet, checking e-mail, blogs, Twitter, interacting with my Facebook groups, etc. While the online interaction has been helpful to me in some ways, it has also definitely been a detriment to mental stillness. That's part of what Iyer talks about here - the need to take a break, to let your mind rest. Since rest is so critical to ME/CFS, we need to make sure we are taking time for real rest in this way.

Enough from me - check out this wonderful, inspiring talk:



Now, turn off that computer and discover for yourself the art of stillness.


Monday, December 08, 2014

Movie Monday 12/8

My son is still very sick with mono, so our movie and TV marathon continues.

We focused more on TV shows this week. We binge-watched season 2 of Orphan Black - BEST SHOW EVER! It is so compelling, it's absolutely addictive. To tell you too much about it would be to deprive you of some wonderful suspense, so suffice it to say it is about clones and is incredible. Give it a try - you won't be able to stop (we watched it free On Demand and on Amazon Prime). Now, we can't wait for season 3.

We also finished season 1 of Extant, a new sci fi show starring Halle Barry as an astronaut of the future  and featuring a life-like android child and an alien presence run amuck. It was also very good. We've also been watching Scorpion, Elementary, and all three of the NCIS shows. Only problem is that my husband and I are getting behind on the shows we normally watch together.

And we watched two movies:

Earlier this week, we watched After Earth, starring Will Smith and his son, Jaden Smith, and directed by M. Night Shymalan. When it was first released, we heard it didn't get great reviews, but all of us really liked it. It takes place in the future, when humans live on Nova Prime, after an apocalypse forces them to leave Earth. During a routine space mission, a ship crash lands on Earth, leaving the father and son as sole survivors on what is now an inhospitable planet. Dad's legs are broken, so it is up to his son to go on a rescue mission to the tail end of the ship, which landed a long ways away, to get the emergency beacon. The movie is nonstop suspense, and we were very impressed by Jaden's performance as a panicked and desperate adolescent alone in a strange place.

Last night, we watched The Lincoln Lawyer, starring Matthew McConaughey as swaggering defense attorney Mickey Haller. Despite the fact that my husband and I both read the book by Michael Connelly and saw the movie before, we didn't remember the details and enjoyed watching it a second time! And our son enjoyed it as well. It's a great suspense movie, with lots of twists and turns, as Mickey tries to defend a rich young man accused of rape and assault.

Our son also watched Gladiator starring Russell Crowe during my nap yesterday, and he enjoyed that one, too.

Have you seen any good movies lately?

Friday, December 05, 2014

My ME/CFS Blog Featured on Be Our Guest Today!


I wrote a guest post, Our New Normal, that is being featured today at the blog Mom's Small Victories for their weekly Be Our Guest feature!

Mom's Small Victories blog is written by Tanya, who has become a good online friend of mine. I found her blog because she writes about books, like I do in my Book By Book blog, but we have a lot more than that in common. Tanya, a mom like me, has Rheumatoid Arthritis (RA), so she also writes about how chronic illness affects her life and her family. And if you're a blogger yourself, check out Tanya's weekly Small Victories Sunday link-up.

My guest post today is a brief version of my family's experiences with ME/CFS - from my diagnosis to my sons' diagnoses to treatments and coping. The focus on the post - as on this blog - is on being positive and finding the value in even painful experiences, so I also write about the unexpected benefits of our new life and what we've gained through living with chronic illness.

So, I hope you'll go check out my guest post and Tanya's blog!

Happy Friday!

Thursday, December 04, 2014

Treating Yeast Overgrowth/Candida


I have mentioned several times since early October that I’ve been worse than usual and going through a bad period. The source of that worsening is a flare-up (again) of yeast overgrowth, after I needed strong antibiotics for bronchitis/early pneumonia two months ago. I was waiting to write about it until I could tell you what worked to get rid of it. I’m not 100% yet but have improved enough to tell you more about what has worked for us (my son also struggles with yeast overgrowth after several years on antibiotics for Lyme).

First off, some basics. Many, many people with ME/CFS have yeast overgrowth, even if they don’t realize it. One reason it is common for us is that it is related to immune dysfunction. One recent study confirms this andidentifies the exact immune markers associated with yeast overgrowth. Yeast or candida is naturally occurring in our bodies and is not damaging normally. Problems occur when the yeast takes over. This often happens after a course of antibiotics because they kill off the good bacteria (aka probiotics) in our gastrointestinal systems that normally keep yeast/candida in check.

Symptoms of yeast overgrowth can vary widely. Some people (like my son and I) get thrush in their mouths. Thrush looks like a white or yellowish coating on the tongue caused by yeast overgrowth. When it gets worse, it can make your mouth and tongue hurt or feel sensitive, especially when you eat sour or bitter foods. Some women develop vaginal yeast infections – another obvious sign of yeast overgrowth (interestingly, though I have struggled with yeast overgrowth for years and often get thrush, I have never in my entire life had a vaginal yeast infection).

However, many of the symptoms of yeast overgrowth are less obvious and far more debilitating. For my son and I, all of our ME/CFS symptoms get much worse – flu-like aches, sore throat, cognitive dysfunction, exhaustion, etc. For me, the worst part is the aches. I spent almost two months this fall wracked with achiness every single day. Amazingly, after experiencing yeast overgrowth so many times before, I didn’t realize what was going on for weeks, until I noticed my mouth was sore. I ran to the bathroom mirror and stuck my tongue out and sure enough, there was obvious thrush in my mouth. Duh.

At first, I tried all the usual approaches (see list below) but to no avail – there was still visible thrush in my mouth and I still felt absolutely awful and was barely able to function. At that point, I asked my doctor to prescribe antifungals (yeast is a fungus). At the normal dosage, even those barely helped. I had to double the dose to finally, finally begin to get the yeast under control. Even that was barely effective – when I went in to see my doctor after more than a month on Diflucan (an antifungal), and she looked in my mouth and still saw the thrush there, she prescribed a stronger antifungal (Ketoconazole), alternating days with the Difucan. I finally started to feel better!

Here are the treatments we’ve tried to get yeast/candida under control, in rough order of what to do first:
  • Take strong probiotics. Probiotic strength is shown by the number of billions of active cultures in each capsule. When yeast overgrowth flares up, we shoot for at least 100 billion units a day. They must be taken away from any antibiotics or even herbals with antibacterial properties (like olive leaf, oregano, or monolaurin) and work best on an empty stomach. We take them before breakfast and before dinner. Saccharomyces Boulardii is a specific type of probiotic that is most effective against yeast, so you should take that as well as general probiotics.
  • Elminate sugar, yeast, and grains from your diet. Depending on how severe the yeast overgrowth is, you may need to severely restrict your diet. Yeast feeds on sugar and, to a lesser degree, on grains. We already eat a Paleo diet (only natural sugars, no grains, no dairy), but I got even stricter to try to get the yeast overgrowth under control. Yes, it is difficult at times, but it is better than feeling so horrible. First thing to eliminate is sugar in almost all forms – a small amount of honey or coconut sugar is OK, and we still eat fruit (at first) and use Stevia for sweetening. You also want to avoid alcohol and yeast (so no bread). If that alone doesn’t work, then also eliminate flour and other grains. I got so desperate, I even eliminated fruit from my diet for a while.
  • Take antifungal supplements & herbals. There are many natural substances that have antifungal properties. I use a product called Yeast Cleanse that includes several of these – there are many other combination products available. Natural antifungals include:
·      Pau D’Arco
·      Tea Tree Oil
·      Caprylic Acid
·      Grapefruit Seed Extract
·      Uva Ursi
·      Olive Leaf, Oregano (we use ADP – emulsified oil of oregano), Monolaurin – these all have natural antibacterial, antiviral, and antifungal properties
·      Coconut oil or other unsweeetened forms of coconut (coconut contains monolaurin)
  •  Use probiotic toothpaste. This is a new one for us, but it is definitely helping. Thanks to a blog reader for suggesting it! Our dietician said she uses it, too. The brand we are using it Designs for Health. I am still brushing with my regular toothpaste, then rinsing, then brushing again (tongue and gums especially) with the probiotic toothpaste (you spit it out but don’t rinse after).
  • Rinse with antifungals. We have used a few drops of tea tree oil in a small cup of water as a mouthwash, and our dietician recently recommended rinsing with Nystatin mouth rinse (requires a prescription) and Argentyn 23. There are others as well. Most you use as a mouthwash – swish and spit – but she said the Argentyn 23 is swish and swallow. I just bought some but haven’t tried it yet.
  • Take prescription antifungals. For both my son and I, ALL of the above still didn’t get our yeast overgrowth under control. In that case, you need to see your doctor and ask for prescription antifungals. The three most often prescribed are Diflucan, Nystatin, and less commonly, Ketoconazole. For stubborn cases (like ours!), it can be more effective to alternate between two or more of them. I am currently alternating days with Diflucan and Ketoconazole. My son has been alternating with all 3 for a year now.

Whew. Yup, we are doing all that, and still struggling to keep the yeast overgrowth under control! But since I started the Rx antifungal rotation, I at least feel a whole lot better (no more aches!) even if the thrush is sometimes still visible. Our dietician (who is also a biochemist) says the diet is absolutely critical – you have to starve the yeast to get them under control.

I’ve felt much, much better the last two weeks (good thing with two very sick people in our household!), but I’m not out of the woods yet. The yeast overgrowth flares up with the slightest amount of sugar, and I’m worried about what will happen when I go off the prescription antifungals. I’m going to try that new Argentyn 23 mouth rinse and just have to wait and see what happens next week when my prescriptions run out.

If achiness or cognitive dysfunction are prominent symptoms for you and/or you’ve noticed some soreness in your mouth, you should see your doctor and look into the possibility of yeast overgrowth as an underlying cause. It amazes me every time I go through this just how horrible it makes me feel and how it worsens all of my ME/CFS symptoms. With it under control, I feel really good and have mental clarity – I even have energy!  - and it’s the same for my son. Treating yeast overgrowth makes a huge difference in overall well-being.

Do you have any other treatments for yeast overgrowth/candida that have worked for you?

         

Tuesday, December 02, 2014

Movie Tuesday 12/2

I didn't have time for a movie post yesterday because I was busy shopping online (Cyber Monday). I got most of my Christmas shopping done - hurray! But I didn't want to miss this post completely this week because we have watched a LOT of movies!

My college son is home with mono, and my husband has been knocked out with a nasty respiratory virus, so we cancelled our travel plans for Thanksgiving and have been watching lots and lots of TV shows and movies. Both of them have been too sick to even read much, so this has been our main form of entertainment, to help pass the time on these long sick days.

We've seen some really good movies this past week - I'll have to stick to short reviews to fit them all in!

We started with The Next Three Days, a unique thriller starring Russell Crowe as John and Elizabeth Banks as his wife, Lara, who is arrested and convicted of a murder she says she didn't commit. John, a mild-mannered college professor, becomes obsessed with proving Lara innocent, while he takes care of their young son. When her last appeal fails, he turns to less legal means to free her. He concocts an elaborate escape plot, with the help of famous escaped convict Damon, played by Liam Neeson. The tension builds as John obsessively works out his plan and finally puts it into action. We all enjoyed this suspenseful film that kept us on the edge of our seats.

Over the holiday weekend, with the library closed, we discovered a couple of good movies on Amazon Prime. First we watched The Perfect Host, starring David Hyde Pierce in a creepy, hilarious role.  John Taylor is a thief looking for a place to hide from the police. He finds a random house in a quiet neighborhood and bluffs his way inside, but the resident, Warwick (played by Pierce) has some secrets of his own. This movie is full of surprises and is a rare suspense movie with a great sense of humor. We all loved this totally unique movie.

Next, we watched The Oxford Murders, a classic murder mystery with a mathematical twist. Elijah Woods stars as an American student named Martin studying at Oxford who wants to find a way to work with the renowned Professor Seldom, played by John Hurt. When Martin's landlord, who is a friend of Prof. Seldom, is murdered and mathematical symbols are left as clues, the student and professor join forces to help the police solve the crime. This one was good but not great, a nice choice for those who like classic mysteries or fans of the TV show Numbers.

Saturday night, we actually convinced my high school son to watch with us (a rare occurrence with his busy social life) when our library request came in: The Hobbit: The Desolation of Smaug. My husband and sons have waited a long time for this one! I liked the book but don't think they needed to take a short book and turn it into 3 very long movies. Despite that, there is no question this is a spectacular movie, with the highest possible production values, great acting, and amazing scenery, costumes, and CGI. It's an epic fantasy, plain and simple.

Sunday, we watched another DVD from the library, Reasonable Doubt, a twisty thriller. Dominic Cooper stars as ambitious Chicago DA Mitch Brockden who is on the fast track to success. Driving home to the suburbs one night, after a drunken evening with his colleagues, Mitch hits a pedestrian who has run into the street. He calls 911 from a payphone but then flees the scene, afraid of what the scandal would do to his career. When the man's murder gets attributed to Clinton Davis (played by Samuel L. Jackson), an angry man who lost his wife and child to a violent crime a few years earlier, it seems that Mitch is in the clear. During the trial, though, Mitch's guilty conscience makes him help prove Clinton innocent. Things aren't always what they seem, though, and this fast-paced thriller keeps you guessing right up to the exciting end.

Last night, we watched another Amazon Prime movie, Flight, starring Denzel Washington as a brash, cocky pilot nicknamed Whip who drinks and snorts cocaine before flying a commercial airliner. Disaster strikes on the flight, and the only thing that saves the lives of most of the people on board is Whip's experience and calm in the cockpit. He might be full of himself and stoned, but he's also a talented pilot. Once the accident is over, the NTSB comes in to investigate, and Whip's intoxication comes to light. It's a taut and suspenseful situation - Whip saved the flight but he also never should have been in the cockpit. Washington gives an emotional performance - we all enjoyed this movie very much.

Whew - that's it for one week! Much more to come this week, I'm sure.

Have you seen any good movies lately?

Giving Tuesday 2014

Today is Giving Tuesday, so it's a great time to contribute to ME/CFS research and other related causes.

Here are some past posts with more information on how/where to contribute:
If anyone has other links to worthwhile charities/foundations related to ME/CFS, please mention them in the comments.

Happy Giving!

Sunday, November 30, 2014

Weekend Cooking 11/30: Turkey & Wild Rice Soup

Each weekend, Beth Fish Reads hosts Weekend Cooking.  I often participate on my book blog, with links to recipes we've enjoyed that week. Sometimes - like this week - I post my own recipes. Since this week's post was a recipe that is gluten-free, dairy-free, and Paleo, I thought I'd also post it here. If you are interested in my past Weekend Cooking posts, you can see them at the link. And if you have any interest in food, head over to the Beth Fish Reads blog, where you'll find lots of links to blog posts about food (not all are about cooking - some are book or movie reviews, etc.).

My college son got mono last weekend, so we had to cancel our plans to travel to spend Thanksgiving with family. By Wednesday, my husband was also sick with a bad respiratory virus. So, we had a very quiet Thanksgiving at home, with just my father-in-law as a guest. I cooked all the traditional foods (thank goodness I have been feeling good this week!), but the smallest turkey I could find was 11 pounds...for 5 of us!

We enjoyed the feast, as well as a dinner of leftovers on Friday, but by then my family was getting sick of the same old stuff, so I used our leftover turkey to make a nourishing soup for my sick family. I based it on the way my mother used to make homemade chicken noodle soup when I was a kid (I still have the basic instructions scribbled down in a strange short-hand in the back of an old recipe book!). Since we are eating a Paleo diet for medical reasons, I subbed wild rice (which is actually a grass, not a grain) for noodles, which turned out delicious. Here's the recipe...in case you were wondering what to do with all that left-over turkey (for those outside the U.S. who didn't have lots of turkey leftover this week, you can also make the soup with fresh or leftover chicken).

Turkey & Wild Rice Soup
(Serves 8)
This is a great way to use left-over turkey after the holidays when you tire of basic left-overs!
Leftover turkey pieces and/or carcass, skin removed *
Tops of celery with leaves
1 small onion, cut into quarters
2 teaspoons olive oil
1 medium onion, chopped
3 stalks celery, chopped
2 teaspoons minced or crushed garlic
1 lb. carrots, sliced
32 oz. (2 cans or 1 carton) chicken broth **
2 cups cooked wild rice
1 teaspoon of sea salt (or to taste)
Fresh ground pepper, to taste
  1. Remove skin from turkey pieces and put in a large stockpot. Add the celery tops and quartered onion to the pot. Add cold water to cover the meat. Bring to a boil, then reduce heat and simmer for 2 hours.
  2. Drain contents of pot through a colander over a large bowl. Set broth aside and allow the meat in the colander to cool.
  3. When cool (it will be just right if you chop your veggies while waiting), sort through the meat in the colander. Discard bones, cartilage, and any other inedible pieces, as well as celery and onion. Chop the turkey meat.
  4. Sauté onion and celery in oil in stockpot over medium-high heat until soft.  Add garlic toward end of sauté.
  5. Add homemade broth, canned broth **, carrots, chopped turkey, wild rice, and seasoning.
  6. Bring to a boil, reduce heat, and simmer covered for 20 minutes, stirring occasionally.
NOTES:
* The amount of turkey we had left over included 2 wings, back, 1 leg, plus a few slices of white and dark meat. I removed the skin to reduce fat.
** Because I started with already-cooked turkey, my broth was a bit light on flavor, so I added the additional carton of store-bought chicken broth. If you start with uncooked turkey and cook the stock for a bit longer, then you probably won’t need the extra broth.
© Suzan L. Jackson 2014
(Do not reprint or publish without written permission from the author)

Friday, November 28, 2014

Life Can Change in a Moment

Ah, yes, that's a lesson everyone with ME/CFS has learned isn't it? Blink and your life can change. We get used to cancelling plans at the last minute, bowing to the whims of this crazy disease, and just going with the flow.

So, that happened to us this past week. We were enjoying a quiet weekend, with plans to leave on Wednesday to spend the holiday weekend with my extended family up in Rochester, NY. Then, bam!, everything changed.

My husband and I heard a loud noise in the middle of the night Saturday, which alarmed us since our younger son was away for the weekend. It turned out to be our older son, home from college in the middle of the night because he was feeling so horrible (and couldn't sleep with a party going on in his apartment!). He woke up Sunday barely able to move, with a severe sore throat and swollen glands. Even more alarming (we tend to get used to sore throats with ME/CFS), he had a temperature of 102 degrees F! This from someone whose normal temperature runs about 97.5 and for whom a "fever" usually means a high of 99 F.

As soon as we finished breakfast, we took him to our local Urgent Care clinic. We thought maybe he had strep throat since people with ME/CFS tend to be more susceptible to bacterial infections. His strep test came back negative, but the mono spot (rapid mono test) came back positive. This is something we have dreaded for many years: one of our sons getting mononucleosis (aka glandular fever in the UK). It is a known infectious trigger for ME/CFS and something that both our boys had always tested negative for, showing no past exposure to the Epstein-Barr virus (EBV).

Of course, we immediately cancelled all our holiday travel plans. Besides the fact that he was in no shape to go anywhere, we were supposed to stay with my dad, who is undergoing chemo for stage 4 melanoma. We couldn't risk exposing him to such a virulent infection.

Before ME/CFS, something like this would have sent me into a panic and upset me greatly. Now, we're used to last-minute changes and cancellations. I was very disappointed we wouldn't be seeing any of our family for Thanksgiving, but there's nothing we could do about it. We accepted the change in plans and made the best of it.

As it turned out, my husband caught a bad respiratory virus starting Wednesday, so it turned out to be a good thing that we (ahem, he) weren't driving 8 hours in a snow storm that day. We had a nice quiet Thanksgiving at home, something that hasn't happened since before our youngest son was born! And we were able to spend the holiday with my father-in-law, whom we just moved to the area a couple of months ago.

Our son is doing a bit better. Of course, the effects of mono can last for months even in a healthy person, but his fever has at least dropped, so he's not quite so miserable as he was. We got him started on Valtrex, an antiviral that works against EBV, immediately, so we are hoping that will help him to kick this sooner. He contacted all of his professors - on the plus side, at least mono is something they will all understand! And he contacted the Disability Office at school to request Incompletes in his classes, since finals are just a week away. He'll probably need to cancel the Winter session class he just signed up for, so he can finish his Fall Semester work.

And that's life with ME/CFS, right? You roll with the punches and adapt. Even when the thing you dread most finally happens, you accept it and move forward. That's one thing I've learned from 12 years of living with ME/CFS. We have little control over our lives, so when something goes wrong, go to Plan B.

Hope all of you in the U.S. enjoyed a lovely Thanksgiving with your families!

Jamie felt well enough to join us at the table for Thanksgiving!

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!

Addition 12/1: I forgot to mention Amazon Smile, Amazon's own charity contribution program.

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?