Adventures in Eating: Paleo and Anti-Candida Diets

I am way behind in writing an update here of my son Jamie and how's he doing since we made all those drastic changes to his diet, supplements, and medicines a few weeks ago. In fact, I am overdue in writing any posts at all here. Even though Jamie did go back to college, I have still been focusing most of my time and energy on his medical issues (researching, learning, shopping for specialty foods, cooking in a whole new way, trading e-mails with our biochemist/dietician consultant, and more). Also, I am still struggling to understand some of what's behind all this, but I will share what I know so far and what we have learned.

First, as I mentioned in my earlier post, the very strict diet Jamie is on was designed specifically for him by the biochemist/registered dietician we are consulting with. He has a very complicated mix of problems: ME/CFS, severe methylation problems, Lyme disease, plus two other tick-borne infections (bartonella and babesia), and long-term yeast overgrowth (plus other problems) from years of constant antibiotic use. So, I am definitely not recommending this diet for anyone else - it's pretty drastic and focused on his individual needs right now. Here are some of the reasons behind the restrictions (anything in quotation marks comes directly from our biochemist/consultant):

• No sugar and no grains because they feed yeast, plus the biochemist/dietician says "they are also mitochondrial and brain poisons."
• No dairy, gluten, or oats because casein (protein in dairy), gluten, and gliadin (protein in oats) block one of the methylation pathways. "Dairy also inhibits the uptake of cysteine by neurons which impairs the neuronal production of glutathione. Considering the brain and its neurons is the most aerobic organ and glutathione the most important antioxidant, the brain becomes subject to severe oxidative stress. Casein also blocks the reduced folate receptor and the transport of reduced folate into neurons." (I told you she was knows a lot!)
• Only pears for fruit because "Pears do not contribute to a yeast overgrowth.  Neither do they ferment."
• Legumes, tree nuts, whole grains, and certain vegetables are also on the No list because they contain oxalates. I don't fully understand yet why oxalates are bad for Jamie (and possibly me), but she said "oxalates and yeast are partners in crime." This has been a tough one here at home because we normally eat a LOT of beans (and they are also not allowed on Paleo - see below).

My son has kept up this strict diet for the past 3 weeks. As you can see from my earlier post, all he can eat is meats, eggs, about 10 different vegetables, 1 pear a day but no other fruits, seeds (like pumpkin seeds and sunflower seeds), and whey protein shakes...plus a bit of chocolate but with very little sugar. Avocado and coconut are both OK, too, but he really hates both of those! No grains at all, though I have been experimenting a bit with coconut flour. He needs his Sunday morning pancakes (this recipe for coconut flour pancakes is pretty good - they don't taste like regular pancakes but when you've had no grains all week, they are still a treat - I put diced pears in them. I also added lemon juice to the coconut milk in order to mimic buttermilk and give the baking soda something to combine with). He has been managing this on campus each week, as he is able to review the menu ahead of time and special-order whatever he needs. So, for instance, if the dining hall is serving BBQ pork for dinner, he can ask for the pork without the BBQ sauce. The pasteurized egg mixture they normally use for scrambled eggs and omelets has milk in it, but he can request fresh eggs each morning.

Generally, he has been eating scrambled eggs with some sort of breakfast meat for breakfast and meat and vegetables for lunch and dinner (unfortunately, he is ordering green beans at every single meal since it's his favorite!). The dietician encouraged him to eat between meal snacks - something he doesn't normally do. She said it's important to give the mitochondria a steady stream of fuel and not "starve" them for long periods between meals. For snacks, he has been eating natural jerky (with no nitrates or sugar), seeds, his one pear a day, and whey protein shakes (flavored plain whey protein powder mixed with water, with only stevia as a sweetener). When he comes home on Sundays, we have those coconut flour pancakes for breakfast and usually steak (his favorite), green beans, and pureed cauliflower for dinner.

Meanwhile, here at home, my husband decided to try the Paleo Diet, in part for moral support and in part because he's wanted to try it for years for weight loss. The Paleo Diet is basically eating the way prehistoric man ate, lots of fruits and veggies, lean meat, nuts, and seeds, with no grains or processed foods and only natural sugars. So, I have been cooking Paleo for dinners here at home and eating mostly Paleo myself while still sticking to mostly no sugar (I still eat a few whole grains, like oatmeal for breakfast 2 or 3 times a week because I feel better when I do). Here's a Weekend Cooking post I wrote on my book blog last week about our Paleo dinners, including a few tasty, easy recipes.

In addition, much of my time has been taken up with experimenting with various chocolately treats for my son (and my husband and I, too). I have tried two different grain-free, dairy-free brownie recipes. These coconut flour brownies were pretty good, though a bit dry (coconut flour is very dry and absorbs liquids like a sponge!) - they are more cake-like than brownie-like. I didn't follow the recipe exactly because it calls for 3/4 cup honey or maple syrup - WAY too much sugar for us. The only sweeteners he is allowed to have are a small amount of coconut sugar or maple syrup and a small amount of stevia (though stevia is actually good for Lyme disease, our biochemist says it is bad for mitochondria). So, I substituted 1/4 cup maple syrup and then made up the liquid with an extra 1/4 cup coconut oil, melted, plus 1/4 cup coconut milk. I also added about 2 oz. unsweetened baking chocolate, melted, for additional chocolate flavor and liquid.

Last weekend, I tried these Avocado Brownies (not telling my son they contained avocado, of course!). We all liked these better - the avocado keeps them more moist. Again, I had to sub out some of the sugar. I used only 1/4 cup of maple syrup, plus 1/4 cup of unsweetened coconut milk, and a couple of teaspoons of stevia to make up the sweetness. Like I said, there's been a lot of experimentation! My kitchen has been a chocolate laboratory the past few weeks.

One experiment that didn't go so well was cooking with raw cacao nibs. The dietician told me they melt. I can say with great authority that they do not melt! We tried everything - microwaving, stovetop, and oven, following her instructions carefully. What came out of the oven every time was a  burned, smoking mess...and still individual, hard nibs. I finally gave up on those, and sent my husband to the grocery store for unsweetened baking chocolate. It contains nothing but chocolate, so the dietician gave it the OK.



With that more familiar ingredient, I have been able to make my son all kinds of chocolate treats (fortunately, our whole family loves very dark chocolate). I melt a package of baking chocolate (4 oz), add in a tablespoon or two of coconut sugar, plus a teaspoon of stevia, stir well and melt more (the coconut sugar remains a bit gritty) and then use the chocolate mixture in a variety of ways. I have made plain dark chocolate bark (pour it out onto wax paper and let it harden then break it up), chocolate bark with sunflower seeds and pumpkin seeds mixed in - that's become my son's favorite treat! - again poured out onto wax paper then broken up when it hardens, and my proudest achievement, sunflower butter cups. My son loves peanut butter, and his favorite treat is peanut butter cups, but peanuts (legumes) are off the menu.

These took some further experimentation. I bought some disposable aluminum tiny muffin tins at the grocery store. First, I drop balls of sunflower butter onto bits of plastic wrap covered with cooking spray, using a melon baller. I wrap each one up, pop then into the muffin tray, and freeze them (this process is the only way I found to keep the sunbutter from spreading out). Once they are solid, I melt the chocolate and add sweetener as I described above, pour a bit into each muffin spot, unwrap the sunbutter balls and put them in the liquid chocolate, then add more melted chocolate on top. Finally, pop them back into the freezer to get solid. Then, they go into plastic baggies, and Jamie keeps them in his mini fridge at school. They are delicious! And now, my son will eat sunflower butter which he wouldn't touch before.

Step 1: Drop balls of sunflower butter onto pieces of plastic wrap covered in cooking spray

Step 2: Wrap up balls of sunflower butter and put into holes of a tiny muffin tin to freeze.

Step 3: Cover balls of sunflower butter in melted chocolate...the finished Sunflower Butter Cups!

So, that's what I've been doing lately! Now you know why I haven't had time to write much - I've been in the kitchen with my fingers covered in chocolate.

Oh, I forgot to tell you the bottom line. Besides the diet, Jamie also quit all antibiotics (including herbals) for several weeks, as described in my earlier post, to give his body a chance to heal. The biochemist says that antibiotics cause damage to our mitochondrial DNA. We increased his Diflucan (anti-fungal for yeast) from 1 a day to 2 a day (200 mg total). Last week, we just began adding antibiotics back in, as his Lyme symptoms began to increase, starting with oregano. The plan is to slowly, gradually add stuff back in.

With all that...he's been feeling pretty good! His energy is better, brain fog is clearing up, and he's managing his 3 classes (including 2 labs) every week at school. He finished his Calc 3 final which was hanging over him from last semester, he's felt well enough to hang out with his friends again (I almost cried with joy when we brought medication to him on campus last week and he said he wasn't in his dorm room, he was in the student center playing ping pong!), and he's even done a little bit of exercise, though he recognizes he needs to take that slow. All good news so far...which is why he's been willing to stick with such a strict diet. The biochemist/dietician wants him to stick with it for another few weeks, to make sure this isn't just a honeymoon phase and the improvement is here to stay, then she will add a few of the lesser bad guys back in.

Oh, and me? Well, I've had a good few weeks, too. I'm not sure if it is due to the partial Paleo Diet (I wasn't eating much sugar or white flour anyway and haven't had dairy for years) or simply that I got my own yeast overgrowth under control (through double Diflucan plus dietary changes) last month. It is very possible that I've been living with behind-the-scenes yeast overgrowth for years without realizing it.

I'm very interested to hear your own experiences with dietary changes, whether Paleo or anti-candida or other trials.

Movie Monday 2/24

We had a busy week last week, but the good news is that everyone is doing pretty well health-wise! My time has still been filled with medical related to-dos, but I do hope to find time to write here this week and bring you up to date on our crazy dietary adventures and other topics.

Meanwhile, it is Movie Monday!

We only had time for one movie this week. On Friday, after a long week, we rented Red 2 with our 16-year old son. He'd already seen this one with his friends at the theater, but he's been wanting to share it with us for a long time. He is a huge fan of the original movie, Red, and we enjoyed it, too. If you missed that one, it was a gem - an action movie with a great sense of humor and an all-star cast, about a group of retired government assassins whom are targeted by the CIA because they know too much. Red 2 is the sequel, with a few of the original cast members (John Malkovich, Bruce Willis, and Helen Mirrin) who are once again pulled out of retirement...this time to both save themselves and the world. It was good but not as good as the original. There is still plenty of action - LOTS of shooting and fighting - and a sense of humor, but it just wasn't quite as entertaining as the first one. We enjoyed it - it was good for a bit of fun Friday night fluff - it just wasn't excellent. Best for action buffs or fans of its all-star cast (this one also included Catherine Zeta Jones, Mary-Louise Parker, and Anthony Hopkins, who, as always, plays insane perfectly).

Have you seen any good movies lately?

Movie Monday 2/17

Finally - I have a little time to write a Movie Monday post!

We've seen a few movies the past couple of weeks. Two weeks ago, with both sons at home (and lots of snow days) and my husband out of town, the boys and I indulged in two 80's/90's classics, both featuring Robin Williams, a favorite of my sons (and mine!)

First, the boys and I watched Good Morning, Vietnam. If you've never seen this classic about the Vietnam War, it is well worth the time! Robin Williams stars as a radio disc jockey assigned to the military's Saigon radio station in 1965. He's a total cut-up (a perfect time for plenty of Williams' free-form zany improv), but as he begins to settle in and gets to know both the locals and the young Americans being sent into the jungles to fight, things take a more serious turn. Both boys liked it, though I don't think they expected its serious side. It's a warm, touching, and very funny film.

In our Robin Williams' double-feature week, we also watched Good Will Hunting, another classic that they'd never seen. This is another one to go back and watch if you never have or an excellent movie to revisit after about 15 years, as I did. It was the movie that propelled both Matt Damon and Ben Affleck to stardom (my sons loved that backstory - how Ben and Matt in real life were best friends from South Boston who wrote this movie, sold it to Hollywood, starred in it, and have been ever-rising stars ever since). In the movie, they play two best friends from "Southie" (South Boston, a blue collar area). Matt's character is brilliant but gets into a lot of fights, frequently gets arrested, and works menial jobs. At one of those jobs, as a janitor at MIT, he solves an unsolvable math problem left on a blackboard and draws unwanted attention to himself. After yet another arrest, he is teamed up with an MIT math professor and must go to court-ordered therapy with the math professor's old friend, played by none other than Robin Williams. This is a more serious role for Williams, without his usual manic energy and improv; it's a wonderful movie overall. Both of my sons enjoyed it, and I was glad to have watched it again.

Fast-forward to a totally different environment this weekend, with our older son back to college, our younger son on a school-sponsored ski trip, and my husband and I alone - a truly rare occurrence! We treated ourselves two 2 newly released DVD rentals that we have really been wanting to see:

Friday night, we watched Ender's Game, a movie we had hoped to see in the theater but missed (as usual). Ender's Game is a favorite book at our house, one that my husband lent to me more than 25 years ago when we were first dating and that our older son read a few years ago and loved also (he did get to see the movie at the theater when it came out!). It's a classic science fiction story (originally published as an adult novel but more recently marketed as YA) about a young boy named Ender who is recruited by the military to attend a special battle training school in space. Earth was previously attacked by an alien species, the Formics, and narrowly defeated them. This time, Earth's leadership has a new strategy: to train young kids/teens in the latest battle technology, building on their superior dexterity, hand-eye coordination, and other skills honed by playing video games. It is an amazing, thought-provoking book about the morality of war, and the movie adaptation was very well-done. We both enjoyed it very much. I hope they make movies of the rest of the series (which we both read decades ago)! (NOTE: This is a movie about war, but most of the violence is high-tech video game-type stuff).

And on Saturday night, Ken and I watched another movie that our oldest son had seen with his friends at college and recommended to us, Captain Phillips. This is the movie based on the real-life story of Captain Phillips, a commercial cargo ship captain whose ship was boarded by Somalian pirates. Wow. It is a compelling and engaging story, with suspense and tension right from the first scene to the last. Tom Hanks does a fabulous job as the captain, as does his counterpart, the Somalian "captain" of the pirate crew who are being forced to hijack ships by a powerful warlord in their country. The movie shows you their perspective and the lack of choices the Somalians have, but your sympathy remains with Captain Phillips and his crew. Interestingly, I read that none of the Somalians starring in this movie were professional actors - they were all recruited from among real Somalian citizens...and they all did an amazing job with their roles. It's an excellent movie, but be prepared for plenty of tension.

So, we've watched some really great movies the past two weeks, both old and new. Have you seen any good movies lately?

Extreme Yeast Battles & Timing of Supplements

I wrote previously here about our - both my older son and I - recent battles with yeast overgrowth. I am doing much better now, as I mentioned in my recent post on our sugar-free diet, but my son, who has been on antibiotics for over 3 years (so far) for Lyme disease, is still in terrible shape. Through the whole 2-month long winter break, he has been mostly incapacitated - totally exhausted, no energy, severe cognitive problems, and increased Lyme symptoms (herx reaction). We tried a lot of things, as indicated on my yeast post, but nothing was helping. In fact, we stopped all antibiotcs - both prescription and herbals - last week, and he still kept getting worse. He is supposed to move back to campus tomorrow for the spring semester, but that seems impossible at the moment.

So, this morning, we consulted again with a biochemist/registered dietician whom had helped our son before - in fact, she helped him improve enough to start college last fall. She has a Master's degree in biochemistry and is unbelievably smart when it comes to all these complex biochemical processes - methylation, infections, immune disorders, mitochondrial dysfunction - all that big mess of interacting stuff that we with ME/CFS and Lyme disease deal with every day.

We learned a lot today, as we always do when we meet with her, including some things for the yeast overgrowth that I've been doing wrong. A lot of it has to do with WHEN he takes certain meds and supplements - I had that all messed up! Here's a summary of what we learned about timing:

• I knew to separate probiotics from antibiotics by at least 2-3 hours. We take probiotics before breakfast and before dinner and antibiotics (both herbal and prescription) at lunch and at bedtime.
• Caprylic acid, Grapefruit seed extract, Pau D'Arco (all common ingredients in anti-yeast supplements) also have antibiotic properties and also must be taken well away from probiotics. We have been taking all of these along with our probiotics, effectively killing off the good bacteria before it has a chance to do any good! These will all move into the lunchtime meds box.
• Activated Charcoal (important for detox, especially in people with Lyme and other infections experiencing herx reactions) acts like a sponge, absorbing whatever it comes across. I was also putting this into the same medicine boxes with the probiotics and the anti-yeast stuff, further rendering his probiotics useless! She suggested he take 2 charcoal supplements an hour or two after eating lunch (and taking lunchtime meds).
• Chlorella - also intended to help with detox - is similar to the charcoal, so I switched it to the same 1-2 hours after lunch, plus more with dinner meds.
• She also recommended taking most of the energy support supplements with breakfast and lunch, early in the day when he will get the most use out of them. This includes cognitive support, magnesium, acetyl-L-carnitine, and CoQ10.
• She suggested grouping all of the fat-soluble meds together at dinnertime, along with the omega-3 fatty acids (we use krill oil capsules), so multi-vitamins (one at breakfast and one at dinner), vitamin D3 (we were taking them multiple times a day - now they are all in the dinner meds).
• We also switched all the milk thistle into the dinnertime meds (they also help with detox and with liver function).

I spent all day today figuring this out and re-doing his weekly medicine boxes (and changing some of mine, too).

To help our son get "unstuck" and past this horrible incapacitated state he has been in, she also suggested some drastic changes for this coming week:

• Super-strict anti-yeast diet: no sugar, no grains at all, no fruit except for 1 pear a day, no beans (a tough one for us - we eat a lot of beans!), only certain veggies (no starchy veggies, corn, or peas), and no legumes or nuts. Yeah, that doesn't leave much! Especially for a 19-year old boy who normally eats lots of whole grains, bread, cereal, oatmeal, fruit, and peanut butter. He will basically just live on eggs, meat, pears, and certain veggies this week. He is seriously upset about this, BUT willing to try anything to feel better at this point. The idea is to remove anything that could promote yeast growth and eat a super-clean diet for a brief period of time to make a fresh start.
• Keep up homemade lemonade for additional detox support (fresh lemon juice, water, bit of stevia, and electrolyte drops for sodium and potassium for OI) - 32 oz per day, which we've been doing all winter break.
• Also, for this next week, stop everything that is antimicrobial (all the yeast supplements listed above, oregano, olive leaf, and antibiotics.
• And, for this next week, eliminate supplements that support sulfur production (alpha lipoic acid and N-acetyl cysteine are the two she mentioned that he normally takes).
• We're leaving in the 1 Diflucan a day, and if he's feeling better by the end of the week, we will add all the anti-yeast stuff back in (at lunch), switch to an alternating "cocktail" of prescription antifungals, and very gradually add the antibiotics back in, as he can tolerate them.

That's the short-term plan. Once we get the yeast overgrowth under control, then we will focus once again on methylation because it is clear from the way he is reacting to antibiotics that his methylation process is once again severely messed up.

It's a lot to absorb and a lot of changes to make at once, but we are hoping this will all help him get back on his feet. I only wish I'd contacted the biochemist back on January 1 for her advice, so we could have done all of this while he was living at home - the super-strict diet will be very tough to maintain on campus. I also feel like I wasted a couple of months (plus a lot of money!) by taking all those supplements at the wrong time of day. But regret does no good for either of us...moving forward and hoping for better days ahead!

NOTE: This super-strict diet was recommended specifically for my son and his individual health problems which include not only CFS and yeast overgrowth but also Lyme disease, bartonella, and babesia plus very severe methylation problems.

I am not recommending this diet for anyone else but was only sharing my son's experiences and what we are trying for him. Any changes to diet or supplements should be discussed with your own doctor.

For those interested in just a basic anti-yeast diet, this Candida Diet website has some great information.

The Sugar-Free Life

As I explained here recently, my 19-year old son and I have both been battling yeast overgrowth. For me, it's a matter of past treatment for Lyme (finished 2 years ago!) still affecting me; for him, he has been on antibiotics (for Lyme, bartonella, and babesia) for over three years now and is no where near finished. As you can see from that earlier post, we have tried a wide variety of remedies. I was already on a sugar-free diet, but it was a hard sell for a 19-year old college boy! He felt so bad, though, that by January 1, he was ready to give it a try. Here are some of the challenges and successes we have encountered in going sugar-free.

I knew when we started out that Stevia was our substitute of choice. A recent study showed that it is actually effective in killing off Lyme bacteria in its biofilm form (I would link to the study, but they've removed the summary until it is officially published). This is huge news! So, Stevia is a two-for-one deal for my son: not only a natural sugar substitute but also helps against Lyme. However, I discovered it's not that simple.

Commercial sugar-free products rarely contain Stevia. So, not being picky about which substitutes were used (since we don't buy or eat many commercial sugar-free products anyway), I found a sugar-free brownie mix at the grocery store that is actually pretty good - even my husband and younger son didn't mind it. Having brownies greatly reduced my son's feelings of deprivation! Our store only had one brand of sugar-free cookies, and they were OK, but my son thought they weren't good enough to bother with.

I was eager to try some sugar-free baking, but I quickly learned that you can't just leave out ALL the sugar in baked sweets, like cookies or brownies (my son's favorites). Sugar adds more than sweetness - it affects volume (substitutes like Stevia tend to be far sweeter than sugar and require much less to sweeten), browning, and texture. It's chemical reaction, and you can't just leave the sugar out. I have tried! I did find one website with mostly sugar-free cookie recipes (the author uses a tiny bit of brown sugar plus Stevia). We tried the chocolate cookies, and they were OK but not great. The texture isn't quite cookie-like; they are very crumbly (I might try adding a couple of egg whites next time as binder and extra liquid). My son actually gobbled them up - he was so desperate for cookies! But I found the bitter aftertaste of the Stevia a bit off-putting. A friend of mine recently told me she bakes sugar-free using unsweetened applesauce (they have hypoglycemia problems) - I'm not sure how the yeast would react to the fructose in the applesauce but might try that.

My son's #1 priority was ice cream, his favorite sweet treat. We quickly learned that all sugar-free ice creams at the grocery store contain sorbitol, a sugar substitute that is fine for some people, but some - like my son and I - have rather severe GI responses to it! Our first bowls of sugar-free ice cream sent us both racing for the bathroom. Even my son isn't willing to put up with that for ice cream. We were very fortunate to discover that our local dairy (that makes the BEST ice cream in the world!) makes a sugar-free ice cream with no sorbitol. They are normally closed during the winter, but I sent them a desperate e-mail message, got a very kind, quick response, and made arrangements to stop by their office (in the middle of a snowstorm!) to pick up 3 quarts of sugar-free vanilla. With that on hand, my son can have brownies with ice cream (his favorite), a root-beer float made with diet root beer (again, we don't drink enough diet pop to worry about it), and even crumbled sugar-free peanut butter cups with ice cream (his own invention). He is much happier.

The sugar-free chocolate category is another where we've been successful. Both Reese's and Weight Watchers make sugar-free peanut butter cups (my son's favorite), and they are both excellent. Whitman's makes lots of sugar-free chocolates, but they are mostly milk chocolate (which brings us back to the GI problems again, since we are both lactose-intolerant). Besides, I greatly prefer dark chocolate. Normally, that's all I eat in the chocolate department: super-dark, pure (no milk products) chocolate. Whitman's Pecan Clusters aren't too bad, their mint patties (dark chocolate!) are good, though I prefer my chocolate straight-up, without fillings. I found the Whitman's chocolate-covered caramels had too much of an aftertaste. My favorite is Weight Watchers Double Chocolate Mousse - sugar-free, dark chocolate, and quite yummy! I found them at our grocery store (though it took some searching).

It was difficult for us both to give up fruit and I have since learned that our bodies react differently to fructose than other forms of sugar, so we are both now having about one serving of fresh fruit a day. Alas, I could not get my son to give up his morning OJ - it was the one thing he refused to do. I tried Prop 50, a reduced-sugar brand that uses Stevia, but he didn't like that. So, I've at least cut him down to just a half cup of OJ in the morning. Our other compromise is Sunday morning pancakes, a long-held tradition in our family. I do make our pancakes with whole wheat flour and Stevia (though the buttermilk has some natural sugar in it), but in our house, we have always used real maple syrup, so he still has that on Sundays.

After being off abx (I had to take them twice in the fall for bronchitis) a while plus taking Diflucan, I am feeling much better. I am sticking to the mostly sugar-free diet because this last bout of yeast overgrowth was really bad, and I don't want to backslide, but I am cautiously adding in a bit of fruit and on occasional square of real dark chocolate (not much sugar in it anyway).

So, that's been our experience with eating sugar-free so far - the ups and downs! If anyone has any advice to offer, especially on baking sugar-free, I would love to hear it. What has worked for you?

WEGO Health Activist Award Nomination

I was very honored to hear last month that this blog had been nominated for a WEGO Health Activist Best in Show Award! Unfortunately, between my own challenges and my sons' medical problems, I haven't had time to even tell anyone about it until now.


Anyway, the award nominations are open for voting now, so if you have found my blog useful, you can vote for me at this link.

And thank you for eight years of kindness, encouragement, and support!

Movie Monday 2/3

Another very busy, somewhat overwhelming week. Son #1 is still home from college for winter break - had a few good days last week and then crashed badly again. Son #2 was home for a few more days recovering from his recent knee surgery, then returned to school - he is doing great! We needed a win.

Anyway, before the flurry of Superbowl excitement (and actually flurries today), we took some time out on Saturday night to enjoy a DVD together:

We watched True Lies, a classic Arnold Schwarzenegger movie from 1994. My husband had seen it before and thought the kids would like it - he pitched it as an action movie with plenty of humor. He was right, and it was entertaining. The big man plays a spy in a top-secret government agency (their motto is "The Last Line of Defense"), but his wife, played wonderfully by Jamie Lee Curtis, thinks he is a boring salesman. Curtis' character is the classic ugly-duckling housewife - conservative hairdo, big glasses, staid outfits. She works as a legal secretary while her husband is off saving the world in secret. Of course, it all blows up (figuratively and literally) in farcical ways! There was a lot of gunfire, plus car chases and explosions, but the film is a lot of fun. The kids enjoyed all the action, and we all enjoyed the humor.

Have you seen any good movies lately?

I Used to Have a Social Life...

I went to a party last night! Nothing super-exciting, just a retirement party for colleagues that my husband was hosting for two friends from his group who are retiring. There are five people total in his group retiring in the past two months, so there have been a lot of these! I have missed all the others, but since my husband was hosting this one and I knew both guys, I made an effort to go and rested all day in preparation.

Even though it was my husband's work colleagues in an office lobby, I had fun! It felt sooo good to get dressed nicely and get out of the house and among normal people. I even polished my nails yesterday (a rare treat and a gorgeous deep blue) and put on make-up! I felt like a real live girl.

I am naturally a very social person, and I had forgotten how much I enjoy just being out among people, talking. I miss that kind of lively, regular interaction. I was healthy until age 37, and I used to be very busy socially. I was kind of a wild party girl in my teens and twenties and loved parties.

Thankfully, I sowed plenty of wild oats back then, so it's not so bad living a quiet life now. I lived in New Orleans when I first got out of college, back when I could easily stay out all night and then go to breakfast in the morning! And after we moved up here to Delaware, my husband and I loved to throw parties. Any excuse would do - we had dinner parties, hosted family holidays, New Year's Eve parties, etc. Our annual Mardi Gras party grew into the highlight of the year for friends - before I got sick, we'd have 50 or 60 people there each year! Now, we can only invite 10 or 12 of our closest friends, and even that is a huge undertaking for me...and pretty much the only party we host all year.

So something as mundane as the office party last night felt like a big deal!

Still, even though I was glad to be there, all the usual challenges persisted. First, of course, is simply that just about everyone else was drinking. That doesn't seem like such a big deal anymore, though I do miss having a flavorful beer or a glass of wine. I just chug down my water.

Then there are the many dangers of the buffet table. It was bad enough just being dairy-free (do you know how many typical party foods contain cheese, sour cream, or cream cheese? Pretty much all of them!). Now, with these yeast problems, I am also no-sugar, so that was an added challenge last night. I realized that almost all dipping sauces contain sugar - I looked down the row - BBQ sauce, honey mustard, cocktail sauce...guess I'll eat my chicken tenders plain! Thankfully, there were some delicious mini crab cakes and guacamole and tortilla chips, two favorites of mine.

The most challenging part of going to a party, though, is that everyone is standing up the whole time, even if there are chairs around. I walked in last night, and that's the first thing I noticed (with a silent uh-oh in my head) - dozens of people all standing and chatting and no chairs. I found a folding chair that I sat in much of the time, but that creates other problems. You can't circulate around to talk to people if you are sitting, and it's not much fun to sit alone in the corner. Some people that I knew did seek me out in my chair, but then you have the awkward situation with everyone else standing and you sitting, at eye level with their belt buckles (and worse!). It doesn't help that I am short to begin with.

At one point, I threw caution to the wind and walked over to talk to a few people I knew. I was enjoying the conversation, but within a few minutes I started to feel lightheaded and sick. The beta blockers help considerably by keeping my heart rate in the normal range, but I could still feel the blood pooling in my legs. I started the classic OI routine - moving my legs around, flexing my toes, moving from one leg to the other, trying to keep the blood circulating - but then I probably looked like I had to use the bathroom! I told my husband, I had a strange moment of looking around at the rest of the crowd in awe, thinking, "How on earth do they just stand around like this for hours?"

But, like I said, I did enjoy myself. It was nice to get out and break up the old routine for one evening, and I enjoyed catching up with people I hadn't seen in many years. I managed to stay from 5:30 until almost 8:30 (it helped that everyone sat down in a conference room for the last hour, while they feted the new retirees). I had fun, but the main emotion I felt as I sat down in my car to drive home was relief! It was so lovely to get home, make a cup of herbal tea, and take my usual evening place, lying on the couch....ahhhh!

The only problem is that even though I can't drink alcohol, I woke up this morning feeling hung-over! I will definitely need to take it easy the rest of this weekend, but it was nice to be reminded of my old self.

Movie Monday 1/27

Despite our exhausting week and recovery weekend, we didn't watch a lot of movies. Since my 16-year old son had knee surgery on Thursday, we let him choose what to do or watch, and he's not a big fan of movies. Even post-surgery, he gets impatient with being inactive and doesn't like like to just "veg," so he would rather play video games. However, on his first day home, he was exhausted enough to sit still for a movie with us, so I chose something light and fun, to perk us all up:

We finally got to see Despicable Me 2! I just love those minions (wish I had some of my own!). This sequel features Steve Carell in the lead role again as Gru, the now-reformed super-villian who is living a quiet life in the suburbs with his adopted daughters. The Anti-Villian League recruits Gru to help them with a particularly troubling case, and he meets a female agent named Lucy. Ah, the plot doesn't really matter - just like the first Despicable Me movie, this one is all about fun and laughs, with plenty of cartoon action, romantic sub-plots, and very mild suspense. And the minions! The scene at the end when the minions are the Village People is the best! This light movie was perfect for us, and it lightened all our moods and inspired lots of hearty laughs - highly recommended during your next down day for some laugh therapy!

On TV, we have been watching Almost Human (new show and excellent), Arrow (my sons' favorite), our old favorite Bones, plus the sitcoms that my youngest loves (two current faves are Brooklyn 99 and The Goldbergs). With our oldest son, we also enjoy Elementary and The Following. My husband and I kind of have all of our own favorites on hold while he is home from college. I hope the episodes we missed are still On Demand.

Have you seen any good movies or TV shows lately?

Recovering

My sons and I are all recovering this weekend. My youngest son had knee surgery (#4) on Thursday, so he is recovering from that. I crashed just from spending most of the day at the hospital with him!  I thought I was doing better this morning and planned to go to the grocery store, but my husband wrestled the list out of my hands and sent me back to the couch! He was right - within a couple of hours, I realized I was still achy and had a sore throat. Sometimes, he knows me better than I know myself. Even after 12 years, I still tend to overestimate what I can do. I am lucky to have him looking out for me!

My oldest son is still struggling to fully come out of the bad crash that started January 2. Actually, he has had a rough time all last semester. He decided to drop his winter session class and just rest and recover, but now there are only two weeks left until spring semester starts. He is definitely doing better, but it doesn't take much to push him over the edge again. I think going to PT yesterday (for a leg injury) was probably why he woke up this morning feeling bad again. He is doing better now, after a nap today and lots of rest. He had to cancel plans with friends to go to a concert today, so he was disappointed about that. He and I are both doing better as we address the yeast issues, but we are getting fed up with the sugar-free diet!!

We are hoping our youngest will recover from his surgery pretty quickly. It turned out to be minor and very quick (he was only under anesthesia for about 15 minutes), plus we asked for 12 hours of post-op saline IV to counteract the effects, and he ended up getting more like 20 hours! Fingers crossed. I will keep you up-to-date on how well our strategy works.

So, that is the news with us this weekend - lots of TV and movies and resting (though now I am wiped out again after making dinner). Hope you are having a good weekend!

Movie Tuesday 1/21

Still very busy and very hectic here, now in the middle of a huge snowstorm! So much for getting anything done this week before my son's surgery on Thursday. This storm is so bad that the area hospitals have cancelled all surgeries for tomorrow - hoping it is cleared up by Thursday. The good news is that I am feeling better - back on Diflucan and frantically gathering information on various types of probiotics, hoping that switching to a new one might help. Several people have recommended Prescript Assist, so I ordered some.

We spent our weekend at my mom's condo in a ski resort so my son could celebrate his birthday (and his freedom before knee surgery) snowboarding with his friends. I mostly stayed on the couch in front of the fire! We did enjoy a couple of movies:

My husband and I watched The Way Way Back on Saturday night, and we both really enjoyed it. It's a coming-of-age story with a large dose of family dysfunction. The main character is a a 14-year old boy named Duncan. As the movie opens, he is riding in the back of a vintage station wagon (what we used to call the way back when we were kids!), reluctantly on the way to spend the summer with his divorced mom (played by Toni Collette), her boyfriend, Trent (played by Steve Carell), and his snooty teen daughter, Steph. Trent has spent summers at the same beach house (looks like Long Island to us) since he was a kid, so this is all his territory. As the cute next-door neighbor girl explains to Duncan, "this place is like spring break for adults."  Duncan hates Trent (with good reason) and is miserable watching his mom and Trent and the other adults go wild, until he stumbles into a job at a local water park, where he meets happy-go-lucky Owen, an adult who never grew up. There is a vintage feel to the movie (they joke that the water park hasn't changed since the 80's) that at times reminded me a bit of Adventureland (which I loved). The movie contains both drama and comedy and was very enjoyable.

Sunday night's movie, which we watched with our 19-year old son, was less of a success! We watched an older sci fi movie, Solaris, starring George Clooney. We all liked the premise: Solaris is a space station orbiting a strange planet where weird things have been happening. Clooney is a psychologist on earth who is sent into space to investigate what's been happening on Solaris. What he finds there is even stranger than expected and impossible to explain. It's a fascinating concept - even my son agreed that the book it is based on was probably very good - but it didn't have enough action for my son and husband. I liked it - my only complaint was that it is filmed with a lot of very dark scenes, dark both thematically and cinematically, so that it was sometimes difficult to see what was happening. But I thought it was thought-provoking and interesting. If you don't care much for action and enjoy sci fi or psychological thrillers, then you might want to give it a try. Incidentally, we never did quite figure out whether we'd watched it before, years ago. Brain fog and getting older can be beneficial at times!

Have you seen any good movies lately?

Struggles and Challenges

I just thought I should pop in to let you know I am still here! I apologize for the lack of blog posts lately. I have so many of them planned in my head but no time or energy to write. Our family has had a rough start to the new year.

My oldest son, who also has ME/CFS, as well as Lyme disease plus two other tick infections, was severely crashed from January 2 until just a couple of days ago. He has been incapacitated, stuck on the couch, and feeling pretty down. He had to drop the Winter Session college course he'd planned to take, and he still needs to make up his Calc 2 final from last semester. Thankfully, he is feeling a lot better now, as of a few days ago, so we are hoping that bad period is behind him, and he can get back to his normal baseline (symptomatic but able to function, taking 3 college classes at a time and living on campus when school starts again in February).

Then about a week ago, my youngest son felt something pop in his right knee, where he'd had three previous surgeries to repair cartilage damage. He says it feels just like before surgery #2, when a chunk of cartilage broke loose and was floating around in his knee. So, we saw the surgeon twice and took him for an MRI, and he is now scheduled for knee surgery #4 this coming week. The MRI didn't show any obvious damage, and it looks like the last cartilage repair is still intact, so the surgeon is hopeful this will be a simple procedure to just remove the loose piece (which seems very small) arthroscopically. Of course, there is no such thing as minor surgery for someone with ME/CFS and OI! We did learn something from those previous surgeries, though, so we've requested a full 12 hours of IV fluids post-surgery, even though this is normally a quick out-patient surgery. We are hoping this will prevent the month-long crash he experienced after the first two surgeries. Fingers crossed!

And then there's me. I had a rough week, with badly flared up symptoms and a lot of "must-do" activities that kept me from resting. My son's 16th birthday was this week, my mom came to visit for a few days, my neighborhood book group met, and then we packed up and went away for the weekend. Whew.

I think my recent worsening is due once again to yeast overgrowth. I am really frustrated by this. I went off the Diflucan a couple of weeks ago and have been struggling ever since. Every few days, my symptoms return - sore mouth, thrush on my tongue, terrible aches all over - and I need to start taking Diflucan again. My prescription is almost out, and I keep trying to get off it, but the yeast is obviously still not under control. If I have the tiniest bit of sugar, it flares up again. So, I will try to get in to see my doctor again when we get home - in between taking one son out of state to see his Lyme doctor and the other's knee surgery! Sometimes, it is a real challenge taking care of myself, as a sick mom with kids who have their own medical problems.

I am resting now. We are staying at my mom's condo in a ski resort (they aren't here) so that my son can celebrate his birthday snowboarding with two friends (the surgeon gave him the OK!). They are out having fun in the snow, and I am lying on a comfy couch under a fleece blanket, with a cup of herbal tea and a nice gas fire by my side. There is something so relaxing about just being away from your own home, filled with so many reminders of all the stuff you should be doing! Of course, the packing and unpacking and travel is tiring, but for now, I am getting some much overdue rest...at least until hungry hordes of teen boys come in from the slopes for dinner!

So, it looks like this week will be just as busy, but hopefully I will feel better. If anyone has additional tips for me on the yeast overgrowth, I am open to anything! I am still doing everything listed on my post on yeast but am still struggling.

Hope you are having a relaxing weekend!

Air Travel with ME/CFS

Or maybe I should call this post The Traveling Circus. I used to pride myself on being low-maintenance, but now I have to carry so many supplies with me and stick to such a careful routine that traveling is a real pain. Our preferred mode of travel is by car (preferably with our pop-up camper in tow!) - in our own vehicle, I can bring along all that I need and we can stick with our own little routines (like my nap time after lunch). Sometimes, though, like just recently during the holidays, we need to fly to visit family.

I thought I'd share my own strategies for travel - and especially air travel - since I've gotten pretty good at it over the past 12 years. I try to keep my carry-on bag as light as possible, though it is usually stuffed full.

Nap/Rest As Much As Possible

First, there are my napping/resting accessories:

I carry a backpack which is the easiest way to carry stuff through an airport, though my husband needed to carry my pack for me several times this trip. Inside the backpack, I stuff a very thin fleece blanket, a small neck pillow, and this time, I added an extra inflatable U-shaped neck pillow (all four of us have these now - they are awesome and easy to bring along! Here's the one we like and a cheaper alternative). The fleece blanket I usually fold up into a small rectangle and use as a lumbar support on airplane seats - even if I were healthy, those seats are uncomfortable, especially when you are 5'1" and they are designed for 6' tall males! I could also use it if I got cold, but that is unlikely - since ME/CFS, I am usually too hot!

The neck pillow(s) I use when I nap, which I have to do even more frequently on a long airplane/airport day. I also bring an eyemask and earplugs (for even better noise reduction, try silicone earplugs). Once the plane is in the air, I usually put all that on, lean my seat back, put my feet on top of my bag, and do my best to rest/nap as best I can. My sensory deprivation kit! The pillow and blanket pretty much fill up my backpack, but they are lightweight.

Treat/Monitor Orthostatic Intolerance

The other group of items I carry in my backpack (besides a lightweight paperback or my Kindle) are related to Orthostatic Intolerance (OI). In addition to too much exertion going through airports, the other major danger in a day of air travel for someone with ME/CFS is even worse OI than usual, brought on by air pressure changes and being upright too much (if you have ME/CFS and think OI doesn't apply to you - it probably does. Over 97% of ME/CFS patients have some form of OI, basically an inability to maintain a steady blood pressure and heart rate due to low blood volume and autonomic nervous system dysfunction).

I wear these lovely-looking kneesocks (they come in much nicer styles now, like the ones at this link). They are compression socks (you can also buy compression tights; wearing compression shorts around the pelvis area also helps). People with OI have difficulty keeping the blood circulating properly to heart and brain - it has a tendency to pool in the lower extremities, especially when upright - so the socks or stockings help quite a bit. You can buy them in any drugstore or online.

Other items, like the water bottle, are related to hydration. While it's important for anyone who flies to stay well-hydrated in that dry environment, it is critical for those of us with ME/CFS. Part of OI is not being able to hold onto fluids, so we need lots of fluids and lots of salt. Post-9/11 restrictions have made this more difficult! I used to bring a full water bottle and a large can of V-8 on planes with me (my son brought Gatorade), but now you can't bring liquids greater than 3 oz. through security. So, I bring my empty bottle, along with a small bottle of Elete, salt water drops that you add to your water (Elete is sold in tiny bottles that would meet airport regulations; I brought an almost-empty bottle - I buy mine on amazon) and fill my bottle with water from water fountains or just buy a couple of bottles of water once I am through security. My son does the same, plus he adds electrolyte solution (we like GU Brew tablets). I still look for V-8 in the airport before I fly or order tomato juice or Bloody Mary mix (without the alcohol) on the plane - both have lots of sodium plus potassium, too.

And finally, I wore my heart rate monitor while walking through the airport. It was enlightening, as always! I found that if I was carrying my backpack, my heart rate went up past my AT pretty quickly - that's when I handed it over to my husband to carry for me (I also had my laptop in my pack this trip which added too much weight for me - lesson learned).

Request Wheelchair Assistance

(added June 2023)

Thanks to many treatments (including treating OI), I am normally able to manage the walking that comes with air travel. I try to arrive at the airport early enough that I don't have to rush, I wear my heart rate monitor and stay within my limits, and I try not to carry too much weight. However, even with all that, air travel involves a lot of walking and standing in lines, all of which can cause a post-exertional crash for those with ME/CFS and long-COVID.

This past January, my husband and I had to fly at the last minute to Texas for a family funeral. This meant two connecting flights each way, with a full day of travel there and back. At the time, I was not in very good shape and knew I couldn't tolerate that much walking and standing. For the first time ever, I requested wheelchair assistance.

What a game-changer! In all three of the airports we flew through, the people who assisted me were incredibly kind and helpful. Our first flight left out of the very last gate in a very long concourse, and I never could have walked it myself at that time without crashing. On the way back, our first flight was delayed, leaving us less than 20 minutes to get from the end of one concourse in Atlanta (huge airport) to the end of a different concourse; we would have missed our connection without the assistance.

Plus, I learned about a hidden bonus with wheelchair assistance: no standing in lines! At security, we were whisked to the front of a line and through very quickly. I opted to walk onto the plane on my own, but that involved a lot of standing, too, and the assistant will stay and push you right to your seat, if you need that. Since standing still can cause a crash even faster than walking (again due to OI, with blood pooling in lower extremities even faster when you're not moving), this is a very important benefit.

Don't be afraid to ask for the help you need! It was a very positive experience for me.

So, those are my air travel tips. It all helps, though a long day of air travel is still exhausting. With all of these aids, it is easier and takes me much less time to recover.

Do you have any air travel tips to add to my list?

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

Movie Monday 1/6

Well, between more holiday days last week plus snow days when we returned home, our family had lots of down time together, so we watched a couple of good movies. As always, with two teen boys and a husband, they are all suspense/thriller/action movies, but if you like those these were both good:

Friday night, my younger son had a friend sleep over, and my husband wanted to watch his alma mater (Oklahoma State) play football, so my older son and I picked a mystery/thriller from Amazon Prime. We settled on an older movie, Copycat, about a serial killer. Holly Hunter does a great job as the SF detective trying to catch an elusive serial killer, and Sigourney Weaver plays a serial killer expert who has become a recluse ever since being attacked by a serial killer who'd read her books. It's a tense thriller filled with twists and turns. And, though it took me a while to recognize him, Harry Connick, Jr. plays the killer who attacked Weaver's character - you have never seen him so ugly or creepy! We both enjoyed it.

Saturday, our younger son went to the movies (you can see who has the active social life around here!), so the rest of us watched Elysium, a sci fi action film that my son has been eager to see. It takes place in 2154, when the earth is a mess and its wealthiest, most powerful citizens have left the planet to live on Elysium, an idyllic space station orbiting earth. Anti-immigration laws prevent the poor masses from coming to Elysium (ah, perhaps a bit of a political statement here?). Matt Damon plays an Average Joe who dreams of someday getting to Elysium with his childhood friend, Frey. The plot was unique and suspenseful, the acting good (Jodie Foster also stars as the evil Secretary of Defense on Elysium), and the movie is filled with nonstop action.

Have you seen any good movies lately?

Happy New Year 2014!

I am home!!! Ahhh....

We had a good trip to visit my father-in-law in Oklahoma, but I am so happy to be back in my own home. My father-in-law keeps his house at 78 degrees F year-round, so we all sweated through the week! My oldest son and I are always hot because of difficulty regulating our temperatures since CFS. At home, we usually set our thermostat at 65 - 67 during the day and 63 at night, so staying with my FIL is a major adjustment. Even when it is 20 degrees outside (as it was one day this week), we are all in shorts and t-shirts. And the funniest part? We talked my FIL in turning it down a couple of degrees, to 76, and he kept complaining he was cold!

He is 88 years old and lives alone, so it is quiet and low-key when we visit, but he normally eats peanut butter sandwiches and canned goods, so I try to cook a lot while we are there. This time, I made 3 big meals and froze left-overs for him. Try standing over a hot stove in a 78 degree house! Not good for OI!

The biggest problem I encountered this week, though, was that I got bronchitis. The very first morning we were there, I woke up with a KILLER sore throat and congestion. For me, that pattern always ends with bronchitis. Normally, it takes a week or two to get to that point, but this time, I was coughing within 2 days, and my chest felt like it was in a vise. I self-diagnosed and immediately started Zithromax (thank goodness I had thrown some in my medication bag when I packed!). Thankfully, within 12 hours, I started to feel better and the pressure left my chest, so by yesterday, I was in good enough shape to fly home (a long 8-hour day of airports, airplanes, and car rides).

On the downside, you may recall that I just spent months battling yeast overgrowth. I had finally gotten it under control, with Diflucan, supplements, and a no-sugar diet, just in time for Christmas so that I could indulge in a few sweet treats. So, now I am back on antibiotcs, and the thrush is back in my mouth! I am still on Diflucan and all the rest and am now back to the strict no-sugar diet. And I just discovered that my cough drops contain sugar. sigh....

Anyway, it is a new day and a new year! I absolutely love this time of year. My natural optimism shines through with thoughts of all the promise and opportunities of a fresh new year. I won't have much time to myself until next week - my son and husband are at school and work today, but there is a big snow storm predicted for tonight which means everything will be closed tomorrow here in Delaware. But, next week, I will take a look back at my progress toward goals in 2013 and new goals for 2014.

Here's to a Happy and Healthy New Year!

Celebrating New Year's Eve with my son in Oklahoma

Movie Monday 12/30

We are enjoying the holidays, visiting family out of town (yes, again! third time this month). I seem to finally have the yeast overgrowth under control, though I am still on Diflucan. However, the first day after we arrived here, I got a killer sore throat and congestion - usually the starting signs of a long, difficult crash that often ends with bronchitis. I'm not feeling completely crashed - a bit low in energy - but I do still have some congestion and a cough is starting. I just hope I can make it back home without things getting much worse. A long day spent in an airport when crashed is torture.

Anyway, with everyone home for the holiday break and now visiting my father-in-law, we have had a little time for movies:

Before Christmas, we watched The Holiday with our sons. My husband and I had seen it before, but our sons hadn't. It's a fun, sweet holiday story with a great cast. Kate Winslet plays a British woman from a small town who wants to get away to help herself recover from a toxic relationship. Cameron Diaz plays a young woman in LA who creates movie trailers for Hollywood production companies and just broke up with her long-time boyfriend. Both women want to get away from their lives, and they connect on a house-sharing website and agree to switch homes for two weeks. Their homes and their lives are very different, so lots of fun ensues. Of course, there are love interests to help heal their wounds: Jack Black plays a sweet music composer who works with Diaz's character in LA, and Jude Law plays the adorable brother of Winslet's character. We all enjoyed it - it's a nice modern take on the holiday movie.

Here at my father-in-law's house, we all watched The World Is Not Enough, a James Bond movie starring Pierce Brosnan. It is the typical Bond movie, with a complicated plot, cool gadgets, and lots of fast-paced action and explosions. I'm not a big Bond aficionado myself, but my husband and sons said this wasn't one of the better ones. I agree that Brosnan isn't the best Bond - he didn't seem to have that classic Bond confidence and unflappable calm. But it was an action-packed movie that everyone from my 15-year old son to my 88-year old father-in-law enjoyed, so if you like action, it's good for a little escape from reality.

In between, we have been watching lots of The Mentalist (season 5) and Modern Family (season 4), two DVD sets that we gave our sons for Christmas, both excellent, as always.

Have you seen any good movies lately?

Movie Monday 12/23

With my college son home and the holiday break in full swing, we were able to watch some movies this weekend.

Both boys were occupied with friends in Friday night, so my husband and I watched Frozen Ground, a very creepy movie about a serial killer in Alaska. If tension and suspense keep you up at night, it's better to skip this one! It was an excellent movie and very well made, with an outstanding cast. Nicholas Cage plays the state trooper heading up the investigation, and John Cusack is chilling as the psychotic killer who is a loved member of the community. Vanessa Hudgens gives a surprisingly emotional performance - far different than her role in High School Musical! - as a prostitute who was beaten and raped by the killer but managed to escape. The movie takes place in Alaska in winter, so it is a very dark setting and a darker theme, especially when we found out it was based on a true story. It was gripping and compelling, with nail-biting suspense, and thoroughly chilling.

Saturday night, our younger son had friends over, so we watched Arbitrage with our 19-year old son, a movie we'd seen previewed on the DVD we watched the night before! This one is free on Amazon Prime right now. It was another suspense movie but of an entirely different sort. Richard Gere stars as a wealthy business man who seems to have it all - good looks, a beautiful wife (played by Susan Sarandon), a loving family, and a thriving business. He's on the cover of Forbes, and is closing a deal to sell his business for over 400 million dollars. Then things begin to slowly unravel, after he is in an accident and his various lies come back to haunt him. "What a tangled web we weave..." It's a good movie with a great cast and a complex plot that keeps you guessing.

Have you seen any good movies lately?

Symptoms of and Treatments for Yeast Overgrowth

Yes, I am still here! Sorry for the long silence here at the blog. As most of you know, I have had a very difficult fall and have been severely crashed for much of the past 3 months. With the holiday season on top of that, I just haven't had any time/energy at all for writing (my book blogs and commercial writing have been neglected also!). But I am back now - back to feeling pretty good and back here on the blog.

As it turned out, much of my suffering the past three months was due to yeast overgrowth, a fact that I didn't figure out until about a month ago. I wanted to share my recent experiences with you in the hopes that perhaps it might help some of you.

Yeast (aka candida) are a type of fungus that normally live in small amounts in your mouth and digestive tract. Problems occur when the yeast increases and/or good bacteria in your gut that normally keeps it in check decreases. One common cause of this yeast overgrowth is taking antibiotics - they kill off all the bacteria in your system, including the good stuff that lives in your digestive tract, allowing the yeast to take over. This is what happened to me this time. Back in September, I took 5 days' of Zithromax for bronchitis. Under normal circumstances, such a small amount of antibiotics wouldn't bother me (especially since I take probiotics every day - see below), but ever since I was treated for Lyme disease (over 3 years of antibiotics every day), I've had occasional flare-ups of yeast overgrowth.

For those of us who have ME/CFS, we don't even need antibiotics to cause yeast overgrowth. Since immune system and GI dysfunctions are an integral part of our illness, yeast overgrowth is a very common occurrence, though one that is often missed or not diagnosed.

How did I know I had a problem with yeast overgrowth? Well, it took me many weeks to figure it out, even though I've experienced it before. My symptoms included fatigue that was much worse than usual and severe flu-like aches all over my body; in fact, the aches these past few months were some of the worst I have experienced in my 12 years with ME/CFS. Increased brain fog is also common with yeast overgrowth. At one point, I looked back at my records and saw that of the past 60 days, I'd only been well enough to leave the house 14 days. That's far worse than is normal for me. For a long time, I assumed that the virus that triggered my crash initially (and started my bronchitis) was the reason for the prolonged crash.

I finally figured out that yeast was responsible when I noticed that my tongue hurt, especially when I ate certain foods (anything bitter, sour, or sugary). The light bulb finally went off at that point, and I ran to the bathroom mirror. Sure enough, I had active thrush on my tongue. Thrush is one sign of a yeast overgrowth - when you stick your tongue out, it looks like a whitish or yellowish fuzz on the back of your tongue and mouth. It generally makes your mouth hurt or feel sore, as mine was feeling, though sometimes it's your throat that feels sore - something easily excused by "normal" CFS symptoms!  While I usually get thrush in my mouth when I have yeast overgrowth, some people get vaginal yeast infections or an itchy feeling around the vagina or anus.

So, what do you do about it? Well, I should have gone directly to my doctor, but instead I tried to treat it myself first (and lost another month to the couch!). There are lots and lots of herbal remedies and supplements that can help, as well as dietary changes, but I wasn't making much progress with those approaches. They definitely helped, but I found that if I had even the tiniest bit of sugar, my symptoms returned. I finally went to see my doctor a couple of weeks ago, and she prescribed an anti-yeast medication (the two most common ones are Diflucan and Nyastatin). This time, it had gotten so bad that it took me a full 10 days on Diflucan before I finally began to feel better...and then it was like someone had flipped a switch!

Here are all the remedies that my son (who is currently being treated for Lyme disease) and I have tried for yeast overgrowth:

* Probiotic: Probiotic are the healthy bacteria that normally live in your GI tract; they also affect the immune system, so it's a good idea for anyone with ME/CFS to take them daily and to double the dose when you are on antibiotics (always take it at least 2-3 hours away from antibtiocs so the meds don't kill off the good bacteria). I take New Chapter All-Flora (dairy free), 1x/day normally and 2x/day during a yeast flare-up; my son takes HMF Forte brand, which was recently rated as having the highest amount of active bacteria.

* Saccharomyces Boulardii: This is a specific type of probiotic that is most effective against yeast. Ever since my Lyme treatment, I take it every day (as does my son). I am now taking it 2x/day until I get the yeast under control.

* Phytostan: This supplement blend was recommended by a Lyme treatment guide that I read, but it seems to have been discontinued just this week. Its main ingredient is caprylic acid, plus other anti-yeast ingredients, so I found an alternative that seems to be comparable, NOW brand Candida Support. My son and I are both currently taking it 2x/day. (NOTE: Phytostan has been discontinued but there are lots of anti-yeast supplement blends available)

* ADP (emulsified oil of oregano) and/or Olive Leaf Extract: Both of these herbal supplements are potent anti-fungals, antivirals, and antibacterials. Our Lyme doctor recommends ADP, and we have taken Olive Leaf for years when exposed to a virus. One potential problem, however, is that both of them could possibly kill off good bacteria while also killing off yeast. Currently, we both take one or the other 1x/day.

* Grapefruit Seed Extract: Another supplement recommended in Lyme treatment guidelines to prevent overgrowth of yeast. We both take it 2x/day for now; I will probably stop once I get this under control again.

Raw, unfiltered apple cider vinegar:  This is NASTY tasting stuff! My son tried it once and said no way, but I took it every day for a while, until I started the Diflucan. Lots of websites recommend this for yeast - I have no idea if it helps, but it seemed to at the time. 1 Tbls diluted in water, 1x per day as needed.

Tea Tree Oil:  Another herbal remedy I've read about - you can add a drop to your toothpaste (and brush your tongue, too) or add a few drops to a cup of water and gargle/rinse your mouth with it. Again, pretty nasty tasting, but it did seem to help, especially if you have active thrush in your mouth.

Avoid Sugar, Refined Carbs, Yeast, and Alcohol: OK, this is the one that's been the toughest for me, and I still can't convince my son to try it (even though his Lyme doctor told him at the last visit that sugar is like poison for him!). People with ME/CFS already avoid alcohol (since it makes OI so much worse), but the rest has been tough for me. However, I did find that it helped. That's when I finally went to the doctor - when the yeast seemed to be improving and even a single bite of something sugary would make it flare up again. I miss my square of dark chocolate at night! (not to mention fruit). Just like you see when you bake something with yeast, yeast literally feeds on sugar, so this can be an important step in difficult cases.

Diflucan or Nyastatin: These are prescription medications and are often necessary when yeast overgrowth has been present for a long time or is stubborn. Like I said, taking Diflucan finally flipped the switch that got me back on my feet, so I am grateful. I have been on it for 16 days so far and still can't eat sugar without a flare-up, so I will probably need to stay on it a bit longer. My son has been on it for years, as part of his Lyme treatment (and I took it every day when I was being treated for Lyme, too). I know people who were totally incapacitated by Lyme disease even after their treatment, until they took an anti-yeast medication and were magically better. I highly recommend seeing your doctor sooner rather than later if you suspect yeast overgrowth or have signs of thrush or yeast infection.

Here is a general overview on diagnosis, treatment, and prevention of yeast overgrowth. And here is a far more complex article on yeast overgrowth that might be helpful specifically for those with ME/CFS. This ties in with methylation issues which are very, very common in people with our illness. This is a complex topic for another day, but we have been investigating this in depth because it is certainly a huge factor in my son's illnesses...and after reading this article about the connection between methylation and yeast, I am now wondering if it might be critical for me as well. If you like, skip past all the details about methylation and focus in on the "Recommendations for reducing yeast overgrowth" at the bottom. We haven't tried many of these yet, though I plan to.

So, that's been my recent experience - another of many examples where I thought I knew all about a topic and then I found out I had a lot to learn! I hope this is helpful.

And, please, let me know if you have some tips or remedies for yeast overgrowth that I didn't mention here. I am still relying on Diflucan at the moment and still unable to eat any sugar (plus my son is constantly battling yeast overgrowth), so any information is greatly appreciated!

* P.S. Please see my later post on Timing of Supplements as to when to take the anti-yeast supplements and probiotics. I had it all messed up at first!

The Invisible Illness

Sorry I haven't posted in so long. We spent most of last week in my hometown, Rochester, NY, visiting family for the Thanksgiving holiday weekend. As you can imagine, it was exhausting, but I did enjoy seeing everyone. It took us 11 hours on the road to get there Wednesday (with a stop at the Lyme doctor who is sort of but not exactly on the way), then there was a BIG family gathering each day with a different branch of the family. Then, an 8-hour drive home on Sunday (most restful part of the weekend!)

Anyway, I managed OK while we were gone by resting a lot at my dad's, but I am still not doing well overall. I've been struggling with yeast overgrowth for months now. I think I am finally getting it under control (I promise a post on all the remedies I've tried when I am feeling better), but this week I have still been feeling pretty horrible, especially in the second half of each day, with sore throat and severe flu-like aches. Each afternoon and evening has been a major struggle for me, both physically and emotionally.

A couple of times this week, I have been reminded of why ME/CFS is called an Invisible Illness.

The first time was on the phone with a family member who'd been in Rochester with us. She remarked on how great my son had seemed, so full of energy that he must be doing much better. In fact, as most of you know, my son has been much worse the past six months (and this relative knows that), and I explained that on the day in question, he'd spent all morning and afternoon in bed because he felt so terrible after playing with his little cousins the night before. He was in such bad shape that morning, he was lying on the floor, until he decided to just go back to bed. But, by late afternoon, he had rested enough to be able to play football and laugh with another set of cousins...and THAT is what everyone saw. Invisible.

This week, even though I was feeling awful and knew I shouldn't, I went to my neighborhood book group Wednesday evening. I'd tried to rest as much as possible all day, but I was still not in good shape. I figured I could manage just sitting on someone's sofa for a couple of hours and talking, but I was wrong. The aches quickly deepened, my orthostatic intolerance flared up, and brain fog began to set in. After an hour, I was feeling horrible. I tried pulling my feet up on the couch and sitting cross-legged (for OI) which helped temporarily, but my symptoms continued to worsen. I was slumped way down, with my head against the back of the sofa, and began to have trouble concentrating and speaking. When I went to the bathroom, I had trouble walking normally and had to shuffle along slowly.

So, of course, I figured it must be obvious to all my friends and neighbors around me. Nope. When I mumbled that I needed to go because I was having a bad day, a close neighbor/friend who has health problems of her own was surprised: "Really?" she asked. By this point, I was ready to curl up on the ground and burst into tears, and I was stunned to realize that no one could tell. How is that even possible? Invisible.

My husband often says that no one outside of our household can possibly understand or even imagine the bizarre life that we live. People only see us when we are well enough to be out; no one but our immediate families are there to witness the days or weeks spent lying prone. It's been months since I've been well enough to manage the grocery store - my husband had to go again tonight to restock. It makes me feel lonely to realize what an isolated world we sometimes live in, that even among close friends and family members, our suffering - even when severe - is often invisible.