Living with Uncertainty

Living with ME/CFS means living with uncertainty. This crazy illness is often characterized by ups and downs in seemingly random patterns. As someone who is analytical and likes data & facts, this constant stream of mysteries can drive me crazy.

If I wake up with a sore throat, I immediately start thinking about what could have triggered it. Did I do too much yesterday? The onset of aches in the evening (which is actually very common for me) sets my head spinning – Was it the trip to the grocery store?  The walk two days ago? Was book group too much for me this week? The slightest sniffle can put me in detective mode – Have I been exposed to a cold? Did something set my allergies off? Should I start antiviral supplements or allergy supplements?

The past two months at our house have been one big ball of mystery and uncertainty. Our college son came home sick in mid-November with a high fever (unheard of for him), severe sore throat and swollen glands. The fever alone was alarming, since like many of us with ME/CFS, he has a lower-than-normal temperature of about 97.5 F typically. The highest “fever” he’d had in the past 10 years with ME/CFS had been 99 and all of a sudden, his temperature was spiking up to 103 and 104. This was not “just a crash.”

We took him to Urgent Care that weekend, and they did a mono spot (quick mono test) that came back positive (note: mononucleosis is known in the UK as glandular fever and is caused by the Epstein-Barr Virus – EBV). Well, that explained everything. Previous EBV testing had shown that he’d never been exposed to mono before, and I’d dreaded this happening ever since he was diagnosed with ME/CFS since mono is a known trigger for it.

However, that explanation started to fall apart the following week. Given the uncertainties of ME/CFS, our primary care doctor ordered EBV blood tests, just to be sure. They came back negative. We floated all kinds of theories – maybe he wasn’t making the antibodies to EBV? Maybe the test had been done too soon? And there we were again, stuck in a state of mystery and uncertainty.

His illness certainly seemed to follow the classic pattern of mono – but then again, ME/CFS tends to mimic mono anyway. His high fever lasted about a week, his severe sore throat a few weeks, leaving him totally exhausted and with no energy at all. At first, even reading required too much energy…and he normally loves to read. As weeks passed into months and he stayed on the couch, we grew more and more worried. Because mono is a known trigger for ME/CFS, it could easily cause a long-term worsening. As the holidays passed and then January, we wondered whether he’d be able to return to college when spring semester started in February. Would he even be able to catch up on his remaining work from fall semester?

Last week, during a routine visit to his Lyme doctor, bloodwork was run, and I asked the doctor to include another EBV test. The results came back early this week – EBV was still negative, showing no sign of exposure now or in the past. Moreover, his white blood cell count was very low, and a few other CBC measures were high. Now, my analytical side kicked in again and my tenuous acceptance of uncertainty disappeared. What was going on? Why wasn’t he getting better? If not mono, then what??

I consulted with three different medical professionals – our primary care doctor, our dietician/biochemist, and an Infectious Disease/CFS specialist we see. They all said not to worry about the low white blood cell count – it was just an indication he’d been fighting an infection and should come up on its own. The dietician mentioned some possibilities for the other abnormal lab results, and our doctor ordered the blood tests she suggested. It was the ID/CFS specialist who came up with the answer that set my mind at rest, though.

She said that with two negative EBV tests, he hadn’t had mono and that it was likely he encountered some other nasty virus that triggered a very severe crash. I’d figured as much myself but was still mystified over the initial high fever. Then she added an offhand comment, “Maybe it was even influenza,” and the lightbulb went on! Three days after our son came home sick in November, my husband got the flu. At the time, we thought, “Wow, what a rash of bad luck. Good thing we cancelled our Thanksgiving travel plans,” but now the puzzle pieces were fitting together.

We may never know for sure what knocked our son down so hard, but it is very likely it was the flu. As is typical with viruses and ME/CFS, he didn’t fully “catch” it (no cough or congestion at the time), but he was exposed to it, and it triggered a severe immune response (i.e. ME/CFS crash). Flu explained the rare fever, and it was likely he was carrying the virus and infected his dad.

Even better than an explanation, our son has been – finally – starting to improve the past few days. He’s been able to do some schoolwork each day, and he’s scheduled his make-up final exams for next week. He actually went out on his own yesterday – first time in 2 months! – to drive down to his campus apartment and pick up some things he needed. Most of all, we have seen him coming back to life – smiling and laughing and even teasing his brother.

We are hugely relieved that he is beginning to improve, but you wouldn’t believe how much better I felt just having a theory that made sense and fit the circumstances! Having a logical explanation that fit the blood test results and the symptom pattern made me feel so much better.

It was the same when I was finally diagnosed with CFS a year after getting sick – such relief at having a name for my illness! Not only that, but with a name, I was able to start learning about my illness. This was not just an emotional comfort to me but had very real, practical effects – understanding my illness allowed me to regain some control over my life. This was especially true of learning about the exercise intolerance of ME/CFS – suddenly, I could see a pattern to the seemingly random ups and downs and could avoid some of the crashes. Same thing when I learned about Orthostatic Intolerance a few years later.

So, I guess my pathological need to explain things, to find the cause for every effect, to solve the never-ending mysteries of ME/CFS has some practical benefits. Living with ME/CFS for almost 13 years now, I’ve become more accustomed to living with uncertainty (though I still don’t like it!). I’ve also had to accept that I can’t always find answers, that sometimes a Why goes unanswered. Our family has learned a lot about living with so much uncertainty. We’ve certainly become accustomed to last-minute changes and cancellations, as this past holiday season showed!

How about you? How do you live with the uncertainties of ME/CFS? Any other analytical types out there like me who also constantly try to answer why?

Movie Monday 1/26

Well, my college son is STILL home sick, sick wiped out from mono in November. Spring semester starts in 2 weeks, so the count-down is on! He is determined to be ready to move back by then. When he got up today and I asked how he felt, he said thoughtfully, "Not terrible." That's an improvement!

So, we are still watching a lot, though last week we focused more on TV shows. He and I are making our way through the early NCIS seasons, currently on Season 3, at lunchtime. With my husband, the three of us have been watching Elementary, Scorpion (love that show!), The 100, and we just started Backstrom last night (great so far). We finished The Mentalist season 6 and are still working on Castle season 6, both Christmas gifts for the boys. And the whole family enjoys Bones and finally finished Firefly - we made that one and only season last! I have heard good things about True Detective and Black Mirror, but we are trying to find someplace where we can see them (we don't have Netflix or Hulu Plus).

As for movies, we watched one on Friday night:

We watched The November Man, starring Pierce Brosnan, one of six films released last year featuring, as one reviewer put it, "aging hitmen coming out of retirement for one last job." Yup, it's true - count 'em up. We enjoyed this one. Brosnan is an ex-CIA agent living a quiet life when he is asked to help extract an old colleague (and his ex-lover) from an undercover job in Russia that has turned dangerous. He does this but is shot at in the process by a group of agents, one of whom he recognizes as the young man he himself trained years earlier. It's a bit confusing at first because it seems like it's US agents trying to kill other US agents (yup, it is), and you aren't sure who the bad guys are. So, this movie is full of suspense, with a nice complex plot that keeps you guessing and, of course, plenty of action including the usual car chases and shooting. Can you tell I am tiring of thrillers?

Which TV shows do you enjoy? Have you seen any good movies lately?

My ME/CFS Improvements in 2014

I can't believe it's almost the end of January already! Things have been very busy here, my college son is still home and incapacitated by mono that hit in November, and I am behind in pretty much everything. But I finally took some time to sit down and look back at how I did this past year, with respect to my illness, and I was thrilled to see the improvements in black and white!

As many of you already know from past posts, I am a data geek and keep track of how I feel each day with a 1-5 scale (1 is great; 5 is severely crashed). I just jot that number in the lower left corner of the day on a monthly calendar before bedtime. I also track how much exertion I had that day, out of 5 (5 being a lot and 1 being little).  At the end of each month, I calculate a few quick numbers: average of how I felt, average exertion, and % of days crashed (for me, that's a day rated 4 or 5).

This week, I took a look back at all those numbers and put them in my Excel spreadsheet (sorry, I used to be an engineer!), and was thrilled to see the positive improvement in all areas!

How I felt overall improved to an all-time high average of 2.3, better than anytime since I got sick 13 years ago! That's a 10% improvement over 2013 which is really great.

My % of days spent crashed in 2014 reached an all-time low of just 8% on average. In my worst years, I spent 20 - 23% of my time crashed and unable to do anything. My worst month last year was once again October when bronchitis hit, as it was in 2013 (which stinks because I love the fall!). However, in October 2014, I was crashed 32% of the time, while in October 2013, I was crashed a whopping 52% of the days! That's a big improvement. I noticed that this year when I went through that rough period, I had a lot of days that I rated a 3 - where I had symptoms and didn't feel good but was still functioning.

I was also excited to see the upward trend in exertion. In 2014, my average exertion level (out of 5) was 3.7, the highest it's ever been since I first got sick with ME/CFS. My exertion levels have been steadily increasing over the past 5 years or so. In real life, that means I am able to do more, to be more active, and am spending less time lying on the couch and more time living my life.

So, where did all this improvement come from? Well, I keep track of that, too! Each year, I set goals for myself and try to set measurable objectives for each one (here are some examples of my health-related goals from 2013). I also keep track of any new treatments or approaches we have tried.

New treatments or changes to treatments in 2014 that might have helped me improve include:

• Switching to a Paleo diet in February (if nothing else, this helped get control of yeast overgrowth which I discovered was a HUGE issue for me)
• Focus on controlling yeast overgrowth - changing the diet, adding more probiotics, adding a bunch of anti-yeast supplements, plus some prescription antifungals when it flared up. We've also tried mouthwashes and even probiotic toothpaste when the yeast flares up. Here are details of our experiences with yeast overgrowth and what has worked.
• Changing Dosing of Low-Dose Naltrexone - after many years on LDN, we switched to taking it every other day and saw a nice boost in energy, just like when we first started it. Details on LDN and dosing here. We also further refined our dosing schedule for inosine and switched from Rx Imunovir to inosine (sold as a supplement in the US). More on treating immune dysfunction, including use of inosine, here.
• Increased 5-MTHF Dose - Per our dietican/biochemist's advice, I increased my dose of 5-MTHF (a form of folate) from 400 mcg a day to twice a day. She said that I shouldn't go too high because of my genetic profile but that small increases might help. This has to do with methylation, something we have been focusing on for a couple of years now.
• Continued to Exercise in a way that doesn't crash me - For the past several years, I have focused on VERY gradually improving how and how much I exercise. The result is improved muscle tone (which helps OI and other aspects of ME/CFS) and improved stamina (which helps everything!). Last year, I improved a small amount on how much I walk (my goal is 3 times a week) and held onto my gains from the previous year to do muscle-building exercise at least twice a week (which I managed about 70% of the time) and starting every day with 10 minutes of gentle, on-the-floor yoga.  I have managed this with the help of beta blockers, using a heart-rate monitor, and listening to my body, going very, very slowly. Exercise has long been a dirty word in our world since it causes post-exertional crashes. This exercise intolerance is a key characteristic of ME/CFS; however, deconditioning only makes us sicker. Newer advice from the top ME/CFS doctors indicates that even the sickest among us can exercise safely and in a way that won't make us crash by following some specific protocols. For instance, if you lie on your back, your heart rate won't rise as much, and you can begin with tiny, tiny leg lifts while in bed. My muscle-building work is all done lying on the ground, and I've really made some gains this way! Dr. Klimas has even produced a series of videos to help explain these concepts and get you started.

So, all in all, it looks like 2014 was a pretty good year for me, health-wise, despite my two months of being crashed this fall. I tried some new things, improved the dosing of older treatments, and continued to make gains with exercise and conditioning. I was more active than I have been at any time since first getting sick in 2002, I felt better on average, and I spent less time crashed. Woohoo!

Next up, I finally need to tweak my goals and objectives for 2015!

How was 2014 for you? Did you try some new things? Did you improve last year or have a worse year?

There are lots and lots of effective treatments available for ME/CFS, including medications, supplements, and lifestyle changes. I have found that nothing helps a lot, but there are a lot of things that help a little...and those little improvements add up over time. Maybe 2015 will be your year to improve!

Movie Monday 1/19

Sorry I didn't write on the blog all last week. I had something scheduled every single day (a situation I try to avoid) so was out running around constantly, just getting home in time for a late lunch and collapsing until the next day when it started all over. Whew.

Our college-aged son is still horribly sick and couch-bound, after getting mono in November (on top of his ME/CFS and Lyme & other tick infections). It's getting frustrating and depressing, for him and for us.

As usual, we helped to keep him amused with lots of his favorite TV shows and movies, so it was another movie week filled with mostly thrillers! As he and I settled in with a thriller Thursday night, with his dad out of town and his brother gone on a ski trip, he sighed and said, "Just what the doctor ordered." Movies can provide that escape hatch when you need it. Here's what we watched:

Thursday, he and I continued our Liam Neeson marathon (Taken and Taken 2 last week) with A Walk Among the Tombstones. Neeson plays Matt, an alcoholic ex-cop who works as a private investigator. He's hired to find whoever kidnapped and killed the wife of a guy whose brother goes to Matt's AA meetings. Before long, he realizes the case is bigger and more complicated than it first appeared, and it becomes a personal  quest of his to find the psychos who are responsible. Along the way, he picks up a wise-cracking but kind black kid living in the streets as a sort of partner. It was a very good movie, with plenty of suspense and a good mystery, plus some heartfelt emotion as the resolution of the case slowly begins to heal both Matt and his new sidekick.

Friday night, when my husband got home from his trip, the three of us watched Guardians of the Galaxy, one of the most popular movies of 2014. This one was off the thriller track, though still filled with lots of action. It's a sci fi superhero movie from Marvel but with plenty of humor and a bit of tongue in cheek. It's about a group of misfits from around the galaxy, including Chris Pratt as Peter Quill who was abducted from earth as a child. Another of those misfits is a living tree that walks and (sort of) talks (he's pretty much unbeatable in a fight), and another of them is a wise-cracking genetically altered racoon named Rocket who works as a bounty hunter. Ok, that sounds kind of stupid, right? Well, it kind of is, but in a warm & funny way. As you would expect from a superhero movie, these misfits end up with the fate of the entire universe in their hands and decide to set aside their differences and selfish goals in order to save the galaxy. It's a fun ride with a really awesome 70's soundtrack (compliments of the mix-tapes and Walkman Peter had in his backpack when he was abducted). Even though my son referred to the songs as "old-timey music," he did enjoy the music, too. There is nothing too dark or disturbing about this movie - it's good for some old-fashioned escape, adventure, a few laughs, and good music.

Finally, we watched Gone Girl (I know, two recent releases in a row - that's a record for us!). My husband and I both read the book last year, though our son hadn't. All three of us enjoyed the movie. If you were somehow living in a cave during the Gone Girl phenomena, it is about a marriage between Nick and Amy that seems ideal on the surface but is revealed - bit by bit - to have plenty of cracks when Amy disappears suddenly. There is lots of psychological suspense in this film, as you go back and forth trying to figure out just who is the bad guy. Some of the detail of the book was left out, but it ends in the same unsatisfying (but clever) way. The two lead actors - Ben Affleck as Nick and Rosamund Pike as Amy - both do an outstanding job in their roles. By the way, my husband and I both enjoyed another Gillian Flynn novel, Sharp Objects, more than Gone Girl (you can read my recent review here).

Have you seen any good movies lately?

Weekly Inspiration: How and Why to Forgive

I have been struggling a lot lately with forgiveness in my personal life. Despite wanting to let things go, I know that I am holding onto a lot of old hurts and resentments, especially with one family member in particular. Things came to a head over the holiday season, as they do occasionally, and we had a huge fight, and all those old resentments that I was trying to forget came to the surface again. Most of these hurts date back to the first years of my illness, when I felt like I really needed my family - perhaps for the first time ever in my otherwise content life - and they weren't there for me. There was a lot of denial on this side of the family, and I was deeply, deeply hurt. Those wounds are still tender now, almost 13 years later. I wrote more about my ups and downs with family and what I have learned in this older post (very funny and telling that when I wrote this post in 2012, I thought that all those old hurts and resentments were behind me!)

After this latest blow-up at Christmas-time, I realized I needed to focus more on forgiveness. I've tried in the past, but I'm obviously not completely succeeding. Holding onto this resentment is not only harming my current relationships, but it is also harming my health - I can feel how those resentments eat away at me, cause me stress, and make me sicker. I know that I need to recognize that the people who hurt me are not going to change, and, in this case, won't ever even admit that they did anything wrong or apologize (to do so, they would have to admit to themselves how much they hurt me). I realize it's up to me - I need to move past these old hurts, and I need to forgive.

In my search for support, I came across this wonderful playlist on TED.com: How (and Why) to Forgive. It's a collection of 6 short talks, all on aspects of forgiveness. There are excellent talks on compassion, on the Golden Rule, and even on forgiving a parent that I found directly applicable to me. But even the talks that I thought at first didn't apply to me - like the first few about forgiving strangers whose actions dramatically harmed someone or changed their life - are also applicable. They made me think, "If these people could manage to forgive these strangers who harmed them so much, then certainly I can forgive my family member with whom I also have so many wonderful, loving memories in addition to the hurts." And I dare you to watch the short talk from the two mothers on opposite sides of 9/11 without a tear or two!

In short, this weekly post is all about inspiration, and these talks have all inspired me. Check them out for yourself. Playlist: How (and Why) to Forgive.
(sorry - since it's a whole playlist, I couldn't imbed the video this time - you'll have to follow the link to the TED website)

I know from lots of discussions with others with ME/CFS that we all have hurts and resentments in our lives - the friends and family who don't understand, who weren't there when we needed them most, who continue to say and do hurtful things. Whether you want to repair and maintain those relationships or not, I think we can all benefit from forgiveness and letting go of that black scourge of resentment that makes us sicker.

What are your hurts and resentments that you need to forgive? Better yet, please let me know if you have been successful in forgiving someone who hurt you or any other resources that might help me in my own quest.

Movie Monday 1/5

Last week, I wrote about all the scary movies my son and I watched while my husband was out of town. This past week was Thriller Week! My younger son was out of town, so my husband, our college son, and I binged on thrillers (their favorite kind of movie!). Although I am starting to yearn for some girly TV and movies, after having our college son home sick the past 6 weeks, these were all excellent thrillers:

On New Year's Eve, our college son (who's had mono on top of his ME/CFS and Lyme and now has bronchitis, too) dragged himself off the couch to go to his best friend's annual New Year's Eve party. Our high school son was at the beach with his girlfriend's family, so it was just my husband and I! We chose a free movie on Amazon Prime: Hours, a thriller set during Hurricane Katrina in New Orleans. We used to live in NOLA, so this was of great interest to us. Nolan brings his wife, Abigail, into the hospital just as the hurricane hits because she has gone into labor five weeks early. His wife dies in childbirth (no spoilers - this is in the first minutes of the movie), but their baby girl survives and is placed on a ventilator. Soon, the hurricane hits hard, and the hospital is evacuated, but no one seems to have the equipment to transport the baby with her ventilator. Eventually, Nolan is left all alone, with his newborn infant relying on the machine to survive. The power goes out, everyone leaves, looters take over...Nolan and the baby face unbelievable odds. It is a fast-paced, heart-thumping survival tale that is surprisingly riveting given that Nolan (played by Paul Taylor) is often the only person on the screen.

On New Year's Day, with all of us wiped out and recovering (it's really not fair that we can't drink but still feel horribly hung-over), the three of us decided to splurge and actually buy a movie on Amazon Prime. My son really wanted to see Taken, since we've been inundated with previews on TV lately for Taken 3. Liam Neeson stars as Bryan, an ex-CIA operative who is trying to rebuild his relationship with his 16-year old daughter, Kim (played by Maggie Grace or as we call her, Shannon, after her character on Lost). Against his wishes, she takes off to Europe for the summer, though he has insisted she take an international phone and call him to check in. During her first check-in call, his worst fears are realized as she and her friend are kidnapped. Friends of his in law enforcement guess that she has been taken by white slave traders from Albania and that he has only 72 hours to find her before she disappears forever. Bryan sets off on his own, using all of his questionable "skills" to try to track her and the men who have taken her. It's a nonstop action thriller, with lots of car chases through the streets of Paris, guns, and fights. And it's every parent's worst nightmare. The moment it ended, our son said, "We have to see Taken 2!"

So, the next day I went to the library and borrowed Taken 2 which we watched last night. It's the same kind of high-action thriller with the same characters. The Albanian mafia wants revenge against Bryan for shooting their sons, brothers, etc. They kidnap he and his ex-wife while they're on a trip to Turkey, and Kim has to pitch in, with her father's instructions, to help rescue her parents. Again, lots of action, car chases (this time through the narrow streets of Instanbul), shooting, and fighting. As with Taken, the actors all do a great job and the heart-thumping action is nonstop. Both are excellent thrillers. Now, we'll have to see Taken 3 when it comes out!

On TV, we've been making our way through the boys' DVD Christmas gifts - season 6 of The Mentalist and season 6 of Castle, two family favorites.

Have you seen any good movies lately?

New Heart Rate Monitor

My favorite Christmas gift this season was a surprise - my husband gave me a new heart rate monitor, a Mio Alpha, that works without a chest strap! I wondered whether these new models were any good, but it actually works much better than my old ones with chest straps...and it is so much easier to use that I have been wearing it a lot more.

My new Mio Alpha - love it!

In case you are wondering why someone with ME/CFS would want a heart rate monitor, check out this post on monitoring heart rate in order to prevent post-exertional crashes. It really works, and is an excellent way to regain some control over your life. I also take beta blockers to lower my heart rate, which has greatly improved my ability to be active without crashing. Between the beta blockers and the heart rate monitor, my last two years have been far more active. I can now cook meals, go to the grocery store, take walks and short hikes - all without crashing afterward! And even when I am not so active - like now, typing on my laptop - I can manage sitting up most of the day instead of lying down all day like I used to. These two things together have really changed my life and improved my quality of life greatly.

This new heart rate monitor represents another step forward for me. The Mio Alpha just goes around your wrist, like a watch, and detects your pulse in your wrist. Previously, I had two different Polar brand heart rate monitors, both of which used chest straps. The first one worked quite well for a while. I bought a new chest strap when it quit working consistently, and that helped for a while. Last year, my husband got me the newest Polar model (FT4). I had trouble with it right from the first day. The instructions said to moisten the chest strap under water - that method worked fine with the older model, but the new one didn't have the absorbent pads on it, so water just ran off. As a result, I couldn't get a consistent reading from it. A friend recommended using electrode gel instead of water, and that worked a little better but it was still not reliable. Besides, having to carry the gel with me and go through the trouble of half-stripping down to get the chest strap with gel on me was very inconvenient.

I went back to using my old Polar for a while this past year, but eventually, neither one was reliable. I'd wet the chest strap and/or smear it with electrode gel, but while wearing it, my reading would suddenly go to 0 or over 200 or I'd just get an error reading. It got to the point where during a 20-minute walk, it was only reading correctly for about half the time. Very frustrating.

I am thrilled with the new Mio Alpha. It provides consistent readings--I haven't seen the reading go out a single time since I got it on Christmas Day. It seems to be very accurate--readings on my neighborhood walk (which I've done hundreds of times) track closely to what the Polars showed (when they worked). And best of all, it is incredibly convenient! I can put it on my wrist in the morning and just forget about it until I need it. Then, when I go for a walk or put in a load of laundry (which has a surprisingly severe effect on heart rate!) or do anything active, I just push a button, and it tracks my heart rate - accurately and consistently.

One final word. There's been a recent article making the rounds lately about wrist heart rate monitors not being as accurate as the ones with chest straps. Note that the Mio Alpha (and perhaps there are other brands) is a continuous heart rate monitor--that's pretty much all it does. The article is focused more on the newer fitness bracelets that are so popular, like Fitbit and other brands, that track all sorts of data and send it to your smart phone. Many of these do not provide a continuous heart rate readout--you have to push a button to see your heart rate at that moment--and apparently, the article says those readings aren't all that accurate. For people with ME/CFS, you really need a continuous heart rate monitor (one that gives a constant readout of heart rate) and one where you can set an alarm for your Anaerobic Threshold (AT), so you know when it's getting too high. You can still use a Fitbit or similar device for other purposes, but we need something more constant and accurate for heart rate, if you want to prevent crashes. Some of the newer or more expensive Fitbit models may do the same now, but read the details carefully.

So, I am starting the new year out well, with a wonderful new heart rate monitor to help me be even more active with even fewer crashes this year! I have taken a walk outside almost every day since Christmas, so I am off to a good start!

If you want to know more on this topic, there is an excellent Facebook group called ME/CFS - Pacing with a Heart Rate Monitor that is focused solely on this subject.

On a hike with my family last week - sunshine makes me happy!

Movie Monday 12/29

Hope you are enjoying the holiday season! This is going to be an oddly timed Movie Monday - no holiday-themed movies for us the past two weeks, but my son and I binged on scary, creepy movies the week before Christmas! My husband was out of town, so we decided to watch all the movies we've wanted to see that he refused to watch us...which are the scary ones or thrillers where a child is involved. All of these were very good, though I did suffer from a few chase dreams that week! So, if your illness is such that your sleep can be disrupted by too much adrenaline, then better to watch these early in the day.

We started with The Call, a thriller starring Halle Berry as Jordan, a 911 operator working in L.A. Jordan is experienced and very good at her job, until the day she makes a mistake that results in a teen girl being murdered. That incident is so disturbing to her that she loses her confidence and moves into a training position instead. One day, taking a group of 911 operator trainees through the bustling call center, an inexperienced operator gets a call from a terrified teen girl named Casey, played brilliantly by Abigail Breslin, who's been abducted and is in the trunk of a speeding car with a disposable phone that doesn't have a GPS chip. Jordan instinctively takes over the call, as the city's emergency services mobilize to try to find the girl before it's too late. Jordan and Casey bond over the phone, as the situation becomes more and more dangerous. Eventually, Jordan takes things into her own hands and sets out to find the girl before she ends up like her previous caller. This is a taut, edge-of-your-seat thriller with excellent acting that we both loved.

Next, we watched a creepy ghost story we've both been dying to see, The Woman in Black starring Daniel Radcliffe of Harry Potter fame. I've heard rave reviews of both the original book and the movie adaptation. The story takes place in an isolated British town sometime in the past (I'm guessing maybe 1910-20 based on lots of horse-drawn carriages and one rare car in the town).  Arthur Kipps, played by Radcliffe, is a lawyer who's been sent to settle the estate of a woman who lived outside town in a house surrounded by a deep marsh that becomes a small island when the tide comes in. Paperwork in the house is a mess, and Arthur decides to spend the night there to sort through it all and finish quickly, so he can spend the weekend with his son and nanny (his wife died in childbirth). Something strange is going on in town, though, and the townspeople don't want him staying at the house - or even staying in town at all. He gradually discovers a ghostly presence bent on revenge. It's a very creepy movie, filled with dark, foggy nights and mysterious, spectral occurrences. We both enjoyed it very much, and my son was excited afterward to show me a trailer for a sequel!

Finally, we watched Prisoners, another thriller we've both been wanting to see that my husband refused to watch because it deals with two little girls being kidnapped (he still wouldn't budge when we explained it's about the investigation, not the girls). Hugh Jackman plays Keller, father of 6-year old Anna, while Terrence Howard plays the father of Anna's best friend, Joy. The two girls disappear on Thanksgiving evening playing outside, while the close family friends enjoy the holiday together. Jake Gyllenhaal plays Detective Loki who investigates their disappearance. Following a lead of an old RV parked in the neighborhood that day, Loki quickly apprehends Alex, a local man with diminished intelligence, but there is not enough evidence to hold him. Crazed with grief and panic, Keller turns vigilante and takes matters into his own hands, while Loki continues to investigate the case. This is a fast-paced and unpredictable thriller, filled with unexpected twists and turns that kept us guessing right up until the final moments - it was our favorite one of the three.

Have you seen any good movies lately? Scary thrillers or sweet holiday films?

And if you like to read, check out our Bookish Christmas, with the books we gave and received as gifts this year, and today's What Are You Reading Monday on my book blog to see what we've been reading this holiday week.

Weekly Inspiration: Laura Hillenbrand

Most people with ME/CFS are aware that our #1 celebrity who shares our illness is the highly-acclaimed author Laura Hillenbrand, who wrote Seabiscuit and Unbroken. Both books spent hundreds of weeks on the best-seller lists and were made into very popular and acclaimed movies.

Much of the general population, however, has no idea that Hillenbrand has been horribly ill for the past 27 years and is mostly housebound. Even fewer people know that her horrible illness is ME/CFS. Because she is rarely able to leave her D.C. townhouse, she's not in the spotlight like other brilliant authors. She's not able to give book readings at bookstores, go on talk shows, or even attend the recent gala premier of Unbroken. So, her inspirational story and her life often stay in the shadows.

I was thrilled to see that the New York Times recently published an excellent interview with Hillenbrand that highlighted her unique challenges and little-known illness in an article titled The Unbreakable Laura Hillenbrand. It's not a perfect article, and the description of ME/CFS is sparse (clearly not much background research was done), but it's a very good article. The author does focus on Hillenbrand's illness and mainly on its effects on her research and writing processes, and it provides some much-needed attention to our illness which is rarely seen in mainstream media.

For a more complete version of Laura's story of ME/CFS, check out the wonderful personal essay she wrote herself, A Sudden Illness, that was published in the New Yorker on July 7, 2003. Here on the New Yorker's website, you can see how the essay appeared and read an abstract. A blogger has posted the entire essay in a pdf file.

So, Laura Hillenbrand is this week's Weekly Inspiration, both for her efforts to help publicize her illness and the effects of ME/CFS and also for her amazing achievements in the face of such monumental challenges. As a writer myself, I find her accomplishments truly inspirational and nothing short of miraculous.

A Plan B Holiday Season!

I mentioned here last month that we had to cancel our Thanksgiving week plans to travel and see family because my college son came home sick with mono that week (on top of his ME/CFS, Lyme, and other tick infections). Well, now we've had to cancel two more trips! When I wake up feeling bad and have to cancel my plans for the day, I usually call it a Plan B Day (my way of coping and adjusting), but this is turning out to be an entire Plan B holiday season!

Staying home for Thanksgiving turned out to be a doubly good thing when my husband came down with the flu and spent a full week in his recliner. One week later, my 16-year old son came home from a soccer tournament with a concussion. We took him to Urgent Care the next morning but weren't too worried - we figured his headache would clear up in a day or two. Two weeks later, we took him to a special Concussion Clinic in our area to see our local specialist.

All in all, our younger son missed two weeks of school - he returned this week for the last day and a half before winter break. Medication prescribed by the concussion specialist helped his headache go away, but even short car rides make him motion sick. The specialist told us last week no car rides over 15 minutes.

So, we once again found ourselves cancelling travel plans - both our weekend plans to travel to CT to celebrate Christmas with our family (I invited them here instead, but they declined - a long story) and also our long-planned vacation in the Florida Keys this week and next. We were supposed to leave the morning after Christmas for a 20-hour drive! Yeah, way out of the question.

So, as always, we are trying to roll with the changes and make the best of things. Our older son is finally showing small signs of improvement after a month home sick - he managed two social activities at our house this past weekend - and our younger son seems to get better every day, as he recovers from his concussion.

The chance to spend the full holiday season relaxed at home is actually a rare opportunity. We normally leave for Oklahoma the day after Christmas to visit my father-in-law. We just moved him out here near us this fall (hence, the rare December vacation plans!), so it's been more than 10 years since we stayed home for New Year's Eve and weren't traveling the week after Christmas. The kids are glad to have some time during the break with their friends. And I am looking forward to starting off the new year not exhausted from travel and with a pile of unpacking and dirty laundry to face!

Hope you are also ready to enjoy the holiday season with your family and friends, no matter what life (or ME/CFS) throws at you!

Our annual Cookie/Grinch party with our oldest friends, a favorite holiday tradition!

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?

$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!

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?

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.

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?

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!

Treating Yeast Overgrowth/Candida

(Updated 1/24/25) 

Overview:

If you have ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), long-COVID, or Lyme disease, and achiness, extreme fatigue, and/or cognitive dysfunction (brain fog) are prominent symptoms for you, and/or you’ve noticed some soreness or visible thrush in your mouth or itchiness in your vaginal area, you should see your doctor to look into the possibility of yeast overgrowth (candida) as an underlying cause. Yeast overgrowth is very common in ME/CFS and long-COVID due to our specific kind of immune dysfunction and in Lyme and other tick infections due to antibiotic use. 

It amazes me every time I go through this just how horrible yeast overgrowth makes me feel and how it worsens all of my ME/CFS symptoms. When yeast overgrowth is flared up, none of my usual ME/CFS treatments seem to help the way they normally do, and I am exhausted and achy and unable to get off the couch, with even minimal exertion (that I can normally tolerate) causing a worsening. With yeast overgrowth under control, I feel pretty 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 for people with ME/CFS and Lyme disease (and other bacterial tick infections).

In fall 2014, my ME/CFS had been worse than usual for months. The source of that worsening was a flare-up (again) of yeast overgrowth aka candida, after I needed strong antibiotics for bronchitis/early pneumonia two months earlier. This post describes what treatments work for us (my son also struggles with yeast overgrowth with his ME/CFS and after several years on antibiotics for Lyme). 

Another bad yeast flare-up in summer 2023 led to further discoveries, and I updated this post. It appears I am a slow learner, though! I was horribly crashed in the last three months of 2023 and thought yeast overgrowth was treated effectively, until one of my doctors noticed I still had thrush on my tongue. That resulted in re-learning how critical diet is in controlling yeast, and now in early 2024, with yeast overgrowth under control, I am feeling better than I have in many years!

Why Is Yeast Overgrowth a Common Problem in ME/CFS?

 

First, some basics. Many, many people with ME/CFS  and long-COVID 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. This study from Pitt found that a particular cytokine, IL-17, helps to suppress yeast overgrowth, as did this NIH review of studies on IL-17 and yeast. Several studies specific to immune function in ME/CFS have shown our IL-17 is often low. Many studies and experts have found yeast overgrowth as a factor in many patients with ME/CFS. And this study digs into the details of immune dysfunction in ME/CFS and a connection to yeast overgrowth.

Yeast or candida is naturally occurring in our bodies and is not damaging normally. Problems occur when the yeast takes over (i.e an overgrowth) and crowds out the good bacteria in the GI system. 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. Because yeast overgrowth often occurs when you take antibiotics, people being treated for Lyme disease and other tick infections are at especially high risk. Our Lyme specialist was the first one to prescribe antifungals for yeast overgrowth for both of us. In addition, the immune dysfunction of ME/CFS makes us more susceptible to bacterial infections than most, so many of us get recurring infections, like bronchitis, sinus infections, and ear infections, that require the use of antibiotics. But even without antibiotics, the immune dysfunction of ME/CFS and long-COVID alone makes yeast overgrowth a common underlying factor.

Symptoms of Yeast Overgrowth

 

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 and is 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 decades and often get thrush, I have never had a vaginal yeast infection). Many of us with ME/CFS have yeast overgrowth that extends throughout our GI tract, even if we can only see it in the mouth.

However, many of the symptoms of yeast overgrowth in ME/CFS and Lyme 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 two months in fall 2014 wracked with flu-like 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. Similarly, with a more recent flare-up, in 2023, I couldn't figure out why I was so exhausted and couldn't get rid of the flu-like aches, until my doctor looked in my mouth, and ... yup, again!

At first, in 2014, 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 only partly effective. When I went to see my doctor after more than a month on Diflucan (fluconazole, 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.  Since then, I have remained on fluconazole daily. I had similar struggles in 2023, even with the anti-fungals! This time, it was my diet that was the key. Sometimes, it takes ALL of the treatments listed below to finally get yeast overgrowth under control.

Treatments for Yeast Overgrowth

 

Here are the treatments we’ve tried to get yeast/candida under control, in rough order of what to do first:

 

Diet:

I just relearned how important diet is in controlling yeast; don't skip this step! 

Depending on how severe the yeast overgrowth is, you may need to severely restrict your diet, at least temporarily. Yeast feeds on sugar and, to a lesser degree, on grains (especially refined grains). There are three main diet options to help control yeast, from least restrictive to most:

• Paleo: no sugars (except limited natural sugars), no grains, no dairy, no legumes, no alcohol. This diet has been shown to be helpful for those with immune disorders.
  
• Keto (full name--ketogenic): moderate protein, very low carb, high fat diet, avoiding most sugars, grains, legumes, starchy vegetables, and alcohol. This puts your body into ketosis, where it burns fat for fuel instead of carbs. It generally results in weight loss and improvements in blood sugar, blood pressure, cholesterol, and other health measures. My cholesterol and triglycerides have never been this low before!
  
• Carnivore: is what it sounds like! Only meats, fish, seafood, eggs, and butter (if you can tolerate it, some high-fat dairy like cheese and cream are OK). A study from Harvard found that 89% of those with autoimmune disease who tried the carnivore diet saw significant improvement in their disease (ME/CFS is not strictly autoimmune but it is an immune disorder). It is also no-carbs, so there is nothing to feed yeast.
  

I talked about these three diets in detail in my video on Diets for Chronic Illness: Paleo, Keto, Carnivore, with tips on how and what to eat with each one, meal and snack ideas and recipes, and more.

In my blog post about a paleo diet, I explained our own "modifications," but I don't recommend that! I think that's what got me in trouble last year and allowed the yeast to get bad again. Stick to paleo, keto, or carnivore. While I said I was eating paleo, my diet had slipped over the years, gradually becoming less paleo, with exceptions for sugar and grains creeping in more and more often. I was also eating plenty of starchy vegetables that feed yeast.

With that terrible flare-up at the end of 2023, what finally got rid of the yeast overgrowth (after trying everything else in this post) was going to a strict, no carbohydrates, carnivore diet (more info on what I did and how it helped in the video at the link). Yes, it is difficult at times, but it is better than feeling so horrible. After three months of mostly carnivore, I transitioned to a keto diet and have kept it up for over a year now. It's not hard at all because I am so thrilled to be feeling so good! I am back to walking, going out with friends, and doing all the things I want to do. Last year, I did not had a single post-exertional crash for six months! (until I got COVID) That makes it easy to stick with.

Step one to control yeast is to eliminate sugar in all forms. Check labels because sugar is added to all kinds of foods. Once yeast is under control, you may be able to tolerate a small amount of honey or coconut sugar and small amounts of fruit, but at first, eliminate all sugars and sweeteners except xylitol and stevia (we like Truvia brand which contains stevia and erythritol). Most sugar alcohols (they end in -ol on ingredient lists and are present in many products labeled "sugar-free") also feed yeast (and can upset the stomach) and should be avoided, but erythritol and xylitol have actually been shown to fight yeast. Use in small amounts, though, to avoid stomach upset. Stevia is a natural, no-calorie sweetener that does not feed yeast and will not upset your stomach. Normally, with the other treatments on this list, I can tolerate some fruit, but when it's as bad as it has been recently, I eliminate that, too. Blueberries and other berries are the least likely to feed yeast and watermelon is very low in sugar. Avocados have almost no sugar, so they're OK, too. I'm even eating a quarter of an avocado occasionally on my mostly carnivore diet. 

All grains and especially refined grains (bread, white rice, pasta, anything made with flour) will also feed yeast--your body reacts to these in the same way as sugar. Start with eliminating sugars and grains. If that's not enough, also eliminate starchy vegetables (potatoes and most root vegetables). If that's still not enough, you may have to further restrict carbs of all kinds.

Search online for "anti-candida diet" to find lots of information and resources. I found this Anti-Candida Diet article helpful. Check out my delicious recipe for a Paleo Chocolate Smoothie, with great health benefits and options for a yeast-friendly smoothie. And for a treat, try my recipe for Sugar-Free Chocolate Bark.

Probiotics:

Probiotic strength is shown by the number of billions of active cultures in each capsule. We take probiotics every day, but when yeast overgrowth flares up, we increase the dose. Renew Life is a good brand that contains 12 different probiotic strains, including those that are important if you are taking (or have taken) antibiotics. When I take antibiotics or have a yeast flare-up, I switch to this stronger variety of Renew Life, with 50 billion units. With this latest yeast flare-up, our functional medicine specialist recommended TruBifido, in addition to the others I usually take. Saccharomyces boulardii is a specific type of probiotic that works against yeast, so you should take that (we take 2 twice a day) as well as general probiotics, with a variety of strains in them, daily. 

We take saccharomyces boulardii and regular probiotics every day, all the time. I add the Renew Life (50) and TruBifido when the yeast flares up. Probiotics must be taken away from (by at least 90 minutes to two hours) 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 bedtime. 

Antifungal Supplements and Herbals: 

There are many natural substances that have antifungal properties that can be taken separately or together. Some combination products include multiple ingredients, but read the labels carefully to be sure you can tolerate all ingredients (for instance, Uva Ursi is a diuretic and not good for those with ME/CFS; some can not tolerate berberine because it lowers blood sugar, etc.) Natural antifungals include:

• Caprylic Acid
• Paramicrocidin (grapefruit seed extract)

•  Aged Garlic Capsules (we like Kyolic, which also includes ginger, another antifungal)

• Olive Leaf Extract, Oregano (we use ADP brand emulsified oil of oregano as it is easier on the stomach), Monolaurin--these all have natural antibacterial, antiviral, and antifungal properties, so they help ME/CFS in other ways, too.

• MCT Oil - Medium-Chain Triglycerides, a component of coconut--contains caprylic acid.
  

• Coconut oil or other unsweeetened forms of coconut (note that coconut contains monolaurin, caprylic acid, and MCT oil)

NOTE: Careful not to take too much caprylic acid, MCT oil, and coconut oil together - they all come from the same source (coconut oil) and too much can cause diarrhea.

Antifungal toothpaste is another option. Thanks to a blog reader for suggesting it! Our dietician said she uses it, too. This brand contains probiotics, xylitol, grapefruit seed extract, and silver (note that some recommend swallowing silver solution, but that can have serious health risks). 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).

You can also rinse with herbal antifungals. We have used a few drops of tea tree oil in a small cup of water as a mouthwash (spit it out!), and our dietician recently recommended rinsing with Nystatin mouth rinse (requires a prescription). Do NOT use regular mouthwash that contains alcohol, as it will feed yeast.

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 (fluconazole), Nystatin, and less commonly, ketoconazole. For stubborn cases (like ours!), it can be more effective to alternate between two or more of them. 

 

Ketoconazole should only be used short-term; I just took it for a month when my yeast flared up badly and wasn't responding to other treatments. Normally, I take Diflucan (fluconazole) every day to keep the yeast in check; my son alternates Diflucan and Nystatin. My doctor said chronic yeast overgrowth is also very common in HIV/AIDS and other immune disorders, and so she feels comfortable keeping me on prescription antifungals long-term, as she does for those other patients.

If you want to avoid prescription medications, then you will have to get extra-strict with diet to get yeast overgrowth under control, possibly going to a carnivore or keto diet and severely limiting all carbs. However, I'm eating mostly carnivore now (no carbs) and still need the prescription antifungals for now; I am hoping to be able to reduce my dose soon.

Whew. Yup, we are doing all that, and until I switched to a carnivore diet, I was still struggling to keep the yeast overgrowth under control! But since I got more strict with my diet, switched prescription antifungals for a month, and added some extra supplements and probiotics, I feel a whole lot better--no more aches! My energy is great, and I'm able to be quite active without crashing. Our previous dietician (who is also a biochemist) and our current functional medicine specialist both say the diet is absolutely critical--you have to starve the yeast to get them under control.

 
I want to emphasize that this regimen usually keeps both of us feeling quite good: no aches, no thrush in the mouth, no exhaustion (unless we overdo), and excellent mental clarity. When we cheat on the diet, skip probiotics, or reduce the antifungals, our symptoms flare up. In fact, last summer after getting it under control, I splurged on a half cookie Saturday evening with friends and a chocolate croissant Sunday morning (I was craving a treat!), and things got worse again. I doubled up the antifungals, took extra probiotics, and got back to my strict diet, and within 48 hours, I was feeling better again. Hopefully, as I continue to improve, I will be able to relax the diet a little bit (at least add some fruit back in), and not see such a big effect. But I have learned my lesson this time and know I can't go back to regularly eating sweets and grains. Once I get past the initial three months of (mostly) carnivore diet, I will probably transition to more of a keto/paleo approach, but I know now that I can't cheat the way I was before.

 

It's still amazing to me what a difference it makes in my overall illness to have the yeast overgrowth under control, and it's the same for my son.

Do you have yeast overgrowth/candida?

What has worked for you to help control it? Please share your tips and advice in the comments!

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