Thursday, February 15, 2018

Throwback Thursday: Correcting Sleep Dysfunction in ME/CFS

In the Facebook group I started for parents of kids with ME/CFS and related illnesses, there have been a lot of discussions recently about helping our kids get better quality sleep. The good news is that researchers have found out quite a bit about the sleep dysfunction in ME/CFS, and - even better! - there are ways to actually correct it at its root cause (not sedatives but ways to correct the hormonal problems that lead directly to sleep dysfunction). Correcting sleep dysfunction is extremely important because if your body isn't getting deep Stage 3 & 4 sleep (as is true for us without treatment), then everything else is going to be worse, especially immune dysfunction, endocrine dysfunction, and autonomic nervous system dysfunction - it is all connected together.

This blog post I wrote back in 2009, Treating ME/CFS Sleep Dysfunction, is still the best and most accurate information I have about sleep dysfunction. It explains WHY our sleep is messed up, exactly what is wrong with it (hint: sleep studies and sleep specialists rarely help), and how to correct it. These approaches have worked wonderfully for my son and I for about 12 years now - we both get normal, refreshing sleep (including deep sleep) every night for 9-11 hours and wake up feeling good and ready for a new day. Note that, like all treatments for ME/CFS, finding exactly the right treatment for sleep dysfunction for each person usually takes some trial and error because we are all different. The kind of meds (again, not sedatives) that work well for my son and I (low-dose TCAs) don't work for a small minority of people due to a genetic defect that prevents them from metabolizing TCAs - if you have your genetic data, you can check for that or you can try them and see. The best approach is to use the two articles I link to in that post (the chart is especially helpful) and to work with your doctor to try different things until you find what works best for you - always start with super-low doses.

That is the primary way to correct sleep dysfunction, but treating other aspects of ME/CFS will usually have a positive effect on improving sleep (though for us, we still need the meds to correct sleep dysfunction.

In particular, treating Orthostatic Intolerance can help prevent random bouts of tachycardia (racing heart beat) during the night that disrupt sleep, so that will help somewhat but won't completely correct your sleep dysfunction. Specifically, though all OI treatments have the potential to help sleep a bit, taking low-dose 24-hour (extended release) beta blockers at bedtime can reduce or eliminate those bouts of tachycardia during the night...and, bonus! you wake up in the morning feeling good and ready to be active.

Treating Immune System Dysfunction can also improve sleep somewhat, since immune dysfunction is at the heart of this disease and is behind the endocrine dysfunction that causes the sleep dysfunction (yeah, we have a LOT of dysfunctions). It's a vicious cycle, so improving one aspect of this illness almost always improves others.

Finally, when you have ME/CFS, you should ignore some of the classic sleep advice that you will get from doctors and even so-called sleep specialists - they usually don't understand our specific type of sleep dysfunction. In particular, I cringe when I hear that a doctor told an ME/CFS patient NOT to take daytime naps and to force him or herself to stay awake during the day. This is terrible advice for someone with ME/CFS because the more exhausted we get, the more dysfunctional our sleep will be. When we get over-tired like that, we end up "wired and tired" and even less able to get a good night's sleep. So, instead of listening to the so-called experts, you need to Listen to Your Body and focus on what helps you to feel best. As most of us have learned the hard way, pushing past our limits only makes us sicker. Also, proactive rest is usually very helpful - where you rest before you feel wiped out in order to to try prevent that complete crash. For me, this means a an afternoon nap every single day, as I explain in this post, How My Daily Nap Saves Me.

Hope all that helps you to improve your sleep and correct your sleep dysfunction - it makes every other aspect of the disease better!

Sweet Dreams!

Tuesday, February 13, 2018

TV Tuesday: The Alienist

My husband and I (and my dad, too) enjoyed reading The Alienist by Caleb Carr, shortly after it was published in 1994, amid a flurry of rave reviews. Now TNT has turned this best-selling story of an 1896 serial killer into a TV series.

If you cross the TV show Bones with an FBI psychological profiler and set it in the 1890's, you begin to get an idea of the feel of this dark thriller. In 1896 New York City, Dr. Laszlo Kreizler, played by Danial Bruhl, is an alienist. According to the show's intro:
"In the 19th century the mentally ill were thought to be alienated from their own nature. Experts who studied them were known as Alienists."
Kreizler is something of a renegade in showing both interest and compassion toward the mentally ill since the standard practice of that time was to lock them up or try to "cure" them through all kinds of barbaric methods.  When Kreizler hears that a young boy dressed as a girl has been found brutally murdered on top of the just-being-built Brooklyn bridge, he sends his friend, John Moore (played by Luke Evans), to the scene, since Moore sometimes works as a crime reporter, putting his drawing skills to work. Moore brings a drawing of the horrific scene back to Kreizler.

The police - who are mostly corrupt and operate on a bribe system - show little interest in solving the case, even after Kreizler points out that other child prostitutes have been found in similar condition recently. This is a class of people the police would prefer to just brush under the rug. Sara Howard, played by Dakota Fanning, grew up with Moore and now works as an assistant to Police Commissioner Roosevelt, the only woman in the police department. She is also interested in the case, and the three begin to investigate it on their own, along with the help of two Jewish brothers who are budding forensic specialists. Despite the apathy of the rest of the police force, Roosevelt wants to do the right thing and so allows this undercover investigation.

As with the original novel the show is based on, my husband and I are both enjoying The Alienist. If you enjoy modern detective and forensic shows, then it is pretty fascinating to see this turn-of-the-century approach, where fingerprint analysis was a brand-new concept and crime scene investigation cursory at best. The three main characters - and the supporting actors as well - are excellent in their roles, and the growing mystery is captivating. As you might expect from a show of this nature, it is pretty gruesome at times and very, very dark, both in topic and tone. I prefer not to watch this one right before bed! It's engrossing though, and we can't wait to see what happens next - I only wish my dad were still here - he would love this show!

We are three episodes into the new show, and all three episodes are still available On Demand (where we watch it) or on the TNT website. You can also watch The Alienist on Amazon, where the first episode is free and additional episodes start at $1.99 (or $15.99 for the entire season).



Thursday, February 08, 2018

Throwback Thursday: Lyme Disease & Other Tick Infections

Diagnosis
Dozens of times each week, I get asked about Lyme disease and whether people with ME/CFS should get tested for it, so it seemed like a good topic for Throwback Thursday.

Just the title of this post I wrote in 2014 answers that question:

Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections.

The reasons why everyone with our diseases should also be evaluated for tick infections (including Lyme disease) are explained in detail in that post, but the bottom line is that these infections are often behind the scenes in ME/CFS or fibromyalgia, and it can be almost impossible for a patient or an inexperienced doctor to tell them apart. What makes getting evaluated for tick infections urgent is that when they are left untreated, they can cause permanent neurological damage. This essay by best-selling author Amy Tan tells about her horrible experiences with Lyme disease that have left her with lingering epilepsy, even after years of treatments. If you have joint pain, headaches, light sensitivity, nausea, or any neurological symptoms at all, it is even more urgent that you get evaluated immediately.

That post also explains why there are no reliable blood tests for Lyme, due to the nature of the Lyme bacteria (it doesn’t stay in the bloodstream) & the fact that many people – especially those with immune disorders like ME/CFS – don’t make the antibodies. The best blood tests only catch about 65% of cases. So, if you get a positive blood test result, you definitely have Lyme, but a negative blood test result doesn’t tell you anything. In addition, Lyme is only one of a dozen common tick infections, and most doctors only test for Lyme. The only way to know for sure if you have tick infections (including Lyme) is to see a Lyme specialist or LLMD who will run the best tests available but will also look at symptoms, history, and physical exam to determine if tick infections are present and which ones – any single positive test result for ANY of the tick infections means you were definitely bit by an infected tick (most people don't remember a bite), then the doctor can figure out which ones based on his or her experience (that’s why you need to see an LLMD). Use the tips and resources at this link to find an LLMD near you.

Treatment
One you find out that you DO have Lyme or other tick infections, you again need a Lyme specialist or LLMD to get proper treatment. Do not rely on a non-LLMD because it can do more harm than good. We found that out the hard way. Our pediatrician diagnosed our son's Lyme disease (he was one of the lucky 65% to have a positive blood test) and treated him with one month of antibiotics. The problem was that he also had two other tick infections that she didn't know to look for. In fact, no one even mentioned the possibility of other tick infections to us, until more than 3 years later when I learned about them from other patients. By then, our son was almost bed-ridden. We took him to an LLMD and found out that he also had bartonella and babesia, two other tick infections, and still had Lyme because you can't get rid of it without also treating the co-infections.
Treating tick infections, especially in the presence of an immune disorder like ME/CFS, is very complicated, so you need an expert to guide you. The various tick infections all require different kinds of treatment - some are not even bacteria!

During treatment, you will likely get worse. This is actually a good thing, a sign that the treatment is working and killing off the culprits. Those dead bugs then flood into your bloodstream, causing a worsening of all symptoms that is known as a Herx reaction. Too many people stop treatment when they get worse, but then those infections are still in your system, doing damage. Instead, there are many, many ways to manage a Herx reaction - the key is to find a balance where you can tolerate the treatment and still function, but you are continuing to make progress against the infections. This blog post explains more about Herx reactions (they also occur when treating viruses with antivirals) and lots of ways to manage them.

Very often, treatment of tick infections includes antibiotics which can then cause yeast overgrowth, a problem that those with ME/CFS are even more susceptible to because of our immune problems. Yeast overgrowth by itself can cause severe symptoms, including sore throat, exhaustion, flu-like aches, and severe cognitive dysfunction/brain fog. This post explains how to treat yeast overgrowth.

Don't let the possibility of yeast overgrowth scare you off from treating tick infections. Antibiotics are not the only treatments used against Lyme, bartonella, and other bacterial tick infections. There are several all-herbal protocols available (your LLMD can tell you more about them). My son switched to the Byron White herbal protocol four years ago, and it has been surprisingly potent and very effective.

Finally, most of the treatments that can help those with ME/CFS will also help those fighting tick infections - things like improving methylation (crucial for those with infections), improving immune function, treating Orthostatic Intolerance, and correcting sleep dysfunction. All of these topics and more are covered in this post on Effective Treatments for ME/CFS.

Don't let the complexities of diagnosing and treating tick infections scare you off. If you have these infections behind the scenes in your body, you will continue to worsen over time, possibly ending up with permanent neurological damage. With treatment, you will see significant improvements over time. My son was almost bed-ridden in high school. Now, 7 years into treatment for his 3 tick infections, he is living on his own, finishing college this semester, working part-time, in the sailing club, and even plays sports. He still has ME/CFS, but treating those infections has provided significant improvement, little by little. He is living an almost-normal life now and hopes to work full-time after graduation. It's been a long and difficult process, but seeing him so much improved makes it all worthwhile.

Monday, February 05, 2018

Movie Monday: Hello, My Name is Doris

After writing my year-end movie wrap-up, Favorite Movies Watched in 2017, recently, I had one of those middle-of-the-night realizations (am I the only one who does that?) - I hadn't reviewed Hello, My Name is Doris last year! Somehow, the review fell through the cracks, which is a shame because it probably would have taken the prize for my favorite comedy last year. I watched this warm and funny movie with my two closest friends, and we all loved it.

Sally Fields stars as the 60-something Doris and steals the show in this fun, quirky role. As the movie opens, Doris has just lost her mother, whom she lived with and cared for her whole life. She is on her own for the first time and has lots of neuroses, including never throwing anything away and living in the midst of clutter. She works in an office, and someone new comes into her reclusive, habit-driven life when a new art director is hired. John, played by Max Greenfield (Schmidt on The New Girl), is hunky and kind to Doris. After a lifetime of reading romance novels, Doris is primed for true love (or lust) and falls for John, despite his being decades younger than her. Her best friend Roz, played by Tyne Daly, thinks she has lost her mind, but Doris' world is opening up for the first time. She is scared but also excited and enlists Roz's granddaughter's help in stalking John online. They discover that John loves a certain band that is playing locally the following week, so Doris goes to the bar where they are playing, sees John there, which leads to even more new experiences.

My friends and I just loved this warm, hilarious movie. Sally Field is perfect as Doris, with her wigs, brightly-colored clothes, and her infectious and growing enthusiasm for life. It's so much fun to see Doris' world opening up, as she explores her freedom for the first time in her 60+ years. It's an earnest, heart-warming, and very funny movie that is filled with joy. This is a great movie to watch when you need a lift!

Hello, My Name is Doris is available for free on Amazon Prime streaming or on DVD. It is available through Netflix only on DVD, not streaming.

You MUST watch this trailer, which highlights some of the warmth and humor of the movie:



    

Sunday, February 04, 2018

Weekly Inspiration: Celebrate the Small Stuff to Banish the Winter Blues

This is a tough time of year for many people, especially those with chronic illness. You may still be crashed from the frenzy of the big holidays, days are short and often gloomy, and you are probably stuck inside the house even more due to bad weather. This stretch between Christmas and Easter (signaling spring!) can be a long and difficult one for many.

For my family, though, this is a time of year filled with joy and fun because we celebrate all the little (sometimes tiny!) holidays in small ways that brighten up the gloomy winter days. Don't worry - you just made it through the major holiday season, and I'm not suggesting another push beyond your limits for even more holidays. Rather, we celebrate in small ways suited to our limits, and you can, too. If you have kids at home, even better - they can pitch in to help decorate (maybe even cook if they are older), and all kids love to celebrate! Even if you are bed-ridden, you can still brighten up these gloomy winter days with small sparks of joy, celebrating days like Mardi Gras, Valentine's Day, St. Patrick's Day...even Groundhog's Day! If you're in a part of the world that doesn't celebrate this stuff, even better! Add some new simple and joyful traditions to your life.

This article I wrote for ProHealth, The Joy of Celebrations, explains how to add small celebrations into your life, with tips that will work even from your bed - wear festive pajamas, ask your partner to bring home holiday-themed foods, have your kids create some decorations to hang in your bedroom,  watch something appropriate for the holiday on TV or your laptop, and more. The article includes lots of practical tips and ideas for bringing some joy into your winter days that will boost you up, not wear you out.

This blog post, The Joy of Celebrations, is one I wrote here on the blog about 7 years ago. You'll see that I used some of the same information and ideas for my ProHealth article, but the blog post includes some of our own family photos of our own small celebrations - even one for Groundhog's Day!

One of our biggest celebrations all year at our house is for Mardi Gras, because my husband and I used to live in New Orleans! My sons and I have now improved enough that we were able to resume our old tradition of hosting a party (though it's a small, quiet one now), but even in our sickest years, we still celebrated in our own small ways alone at home. Here are some ideas and links for celebrating Mardi Gras from your bed, no matter where you live! There's even a link there to live webcams of the parades in New Orleans. Unfortunately, the links to my recipes on that post are no longer working (the magazine I published them in was sold, so they are no longer on the site), but you can see those recipes here, in a copy of the article. Mardi Gras Day this year falls on Tuesday, February 13, so next weekend is a great time to celebrate.

Here at our house, we will be celebrating Superbowl tonight (no, I don't care about football, but I enjoy the foods and the ads!), and next week is Mardi Gras! We don't do as much for Valentine's Day, with our sons out of the house now (and this year, it is the day after Mardi Gras Day), but my husband and I will get some yummy take-out and share some chocolate.

My psychologist who specialized in chronic illness used to always ask me, "What are you looking forward to?" We have lots of spots of joy coming up in the next two months to look forward to! Add these no-fuss, no-work mini-celebrations into your life, and you'll be past those winter doldrums before you know it...maybe you'll even look forward to this time of year! (though you can keep celebrating small holidays any time of year)

How do you celebrate the small stuff?

Happy Mardi Gras!