Thursday, November 30, 2017

Throwback Thursday: Donate While You Shop!

I had hoped to get this post up BEFORE Black Friday and Cyber Monday, but I am hoping it is still in time to help you...

There are 3 easy ways to donate to your favorite charity while you shop this holiday season (and year-round). It costs you nothing at all - online stores have agreed to donate a portion of the money you spend on their site!

The one I use most often is iGive. You just start on their site (or use their app for mobile devices), choose your store or search for the item you want to buy, and then click through to the online store. iGive shows what percentage each store has agreed to donate, coupons that are available, and they show a running total on your iGive page of how much you have donated and how much has been donated to your chosen charity in total. So far, according to iGive, my own shopping has donated $228 to Solve ME/CFS, with over $6000 total donated! And I didn't have to do a thing (except sign up and click through the site when shopping). You can choose your own favorite charity.

GoodShop works similarly. You can sign up at the link, choose your charity, and then go through the site to your stores when you are shopping online. I use iGive more often, but sometimes a particular store will only be signed up with one or the other donation service. Both show available coupons for your store and also offer search engines.

Finally, Amazon has its own donation service called AmazonSmile. You sign up and choose your charity. Then, anytime you start from AmazonSmile, a portion of the money you spend on Amazon goes to your charity. Since we buy all of our supplements through Amazon, this can add up fast!

These are my three go-to sites for easy donation while I shop. Do you know of others?

Sign up today, and while you do your holiday shopping this season, you can be contributing to ME/CFS research or whatever your own favorite charity is! It's like giving ourselves an extra holiday gift.

Tuesday, November 28, 2017

TV Tuesday: Norsemen

Hi, I'm back! Sorry for the quiet blog, but I was away for most of the past 10 days, first on a rare mini vacation to Florida with my husband and two sons and then up to my hometown, Rochester, NY, for a busy Thanksgiving weekend filled with big family gatherings. It was great to see everyone but completely exhausting, of course. My husband said too bad we couldn't do it in the reverse order and end the week with the quiet, relaxing (and warm) part at the beach!

So, catching up and getting back to business here on the's Tuesday, so that means a TV review! And our 19-year old son introduced us all to a very funny show while we were on vacation: Norsemen, a parody about Vikings in 790 AD Norway.

My older son and husband, who love the TV drama The Vikings, said that Norsemen is a perfect parody of it - even certain scenes they said seemed pulled right out of the dramatic series and played here for laughs. The show focuses on a small Norwegian village, where the strongest males (and one female) of the clan (including their Chief, Olav) go out on raids and return home victorious with the spoils of their adventures. Back at home, Orm, the hapless and wimpy brother of Olav, takes over as temporary Chief. In the very first episode, the Viking crew is returning home from a raid with some new slaves in tow, including a Roman named Rufus, who is not at all happy to discover how this cruise ends! Rufus creates plenty of problems in the small village and is intent on bringing live theater to this remote region.

The laughs come frequently on this very silly but engaging show. What makes it extra-funny are the glimpses of modern life and language woven into the Viking tale. If you look at the actors' names listed on imdb, you'll see it's an entirely Norwegian cast, but we recognized several of our favorites from other Norwegian shows we enjoy, Occupied and Lilyhammer. Think of Norsemen as a cross between Monty Python and The Vikings - very funny, clever, and often just plain silly. It certainly had my husband and sons quoting entire swaths of dialogue over and over all week and laughing hysterically (much in the way that Monty Python and the Holy Grail affects them!) - and, I admit it, I was laughing along with them.  This show is just plain fun and perfect if you need some mindless escape. Note that there is sex and violence in the show - these are Vikings, after all.

Norsemen is available on Netflix, with two short seasons of six episodes each currently available. We hope there are more to come!

I'm not sure this trailer does the show justice, but at least it isn't giving away all the best lines - there are a lot of laughs in this show:

Tuesday, November 14, 2017

TV Tuesday: Friends from College

When my husband was away in Europe for work two weeks ago, I was searching for a new show to binge on streaming and decided to give Friends from College a try. Its all-star cast is very funny, but it also tackles serious topics - the very definition of a dramedy.

As the first episode begins, Ethan, played by Keegan-Michael Key, and his wife Lisa, played by Cobie Smulders who was Robin on How I Met Your Mother, are moving to NYC where they will be reunited with their close group of friends from college. The six friends all went to Harvard together and are now facing their 40's. One of the group, Marianne, played by Jae Suh Park, will be sharing her tiny apartment with Ethan and Lisa until they can find their own place. Max, played by Fred Savage who starred in The Wonder Years as a child, is another of their group, now happily living with his partner Felix, played by Billy Eichner. Nate Faxon, who I enjoyed watching on Married, plays Nick, who is still single and still acting like a college boy. The sixth member of the group is Sam, played by Annie Parisse, who is married, has two adorable children, and lives with her wealthy husband Jon, played by Greg Germann, in a big house in Connecticut.

Viewers know right from the beginning of episode 1 that Ethan and Sam have continued sleeping with each other since college. It was an occasional thing for the last 20 years, but with Ethan now living in NYC, life gets a lot more complicated. The six old friends revert to college-aged behaviors when they get together, much to the chagrin of their spouses. Felix is particularly stumped as to why his usually sophisticated partner, Max, turns into a raucous adolescent with these people.

As you would expect from the cast list, the acting is top-notch, even the supporting roles. Fred Savage is especially good as Max, and of course Keegan-Michael Key is hilarious whenever he is on-screen. There are a lot of laughs here but also plenty of drama. The "close" friends actually have a lot of secrets hidden among them, and the show even deals with some serious issues, like infertility (and of course, infidelity, too). So, it's funny but sometimes with an undercurrent of sadness. None of these people is as happy as they pretend to be to their old friends. I watched the entire first season in that week while my husband was away and enjoyed it. It was definitely a bit darker than I expected - but still funny.

Friends from College is a Netflix exclusive show, available only on Netflix. Season 2 will be released in 2018 - I'll be watching it!

Sunday, November 12, 2017

Weekly Inspiration: Managing Family Relationships - Holidays & Beyond

With Thanksgiving next week here in the US and the start of the holiday season, I thought it was a good time to repost an article I wrote for ProHealth about this time two years ago: Managing Family Relationships - Holidays and Beyond (you can read the full article at that link or below).

While family relationships can be challenging for those of us with chronic illness all year round, the holidays bring special challenges, including being together with a large group of family members all at once, some of whom may not be very supportive of you. Over the years, I have moved from bitterness and resentment and dreading family gatherings to once again enjoying the holidays with my family. This article includes some tips for managing this holiday season...and maybe even enjoying your family for a change!

What has worked for you?

Managing Family Relationships – Holidays and Beyond

Family relationships can be fraught with challenges when you live with a chronic illness, especially one that is often invisible. I speak from experience, as two of my family’s favorite coping mechanisms are denial and avoidance! Though some of my family members have been supportive of me since I first got sick, many others still never mention my illness and pretend everything is fine.

It took me many years to realize they were acting out of denial, that they really did love me, and in fact, their denial may even be based in how much they love me because it is hard to accept that a loved one will never recover. Also, some people just feel uncomfortable and don’t know what to say or how to act when faced with chronic illness in a loved one.

With the holiday season in full swing and lots of family gatherings, here are some of the things I have learned over the years to make spending time with family less stressful and more enjoyable:

Try to Explain – Once (maybe twice)
When I was first diagnosed, I sent out an e-mail to family and friends, explaining what ME/CFS was and how it affected me. After one horrible family vacation, I sent a long letter to one influential family member, explaining how their (non) actions made me feel. Things got better after that. Try explaining to your family how your illness affects you, though it’s best to do this before the big holiday dinner. Don’t get overly emotional and stay away from blaming. Just explain in simple terms what your symptoms are and the things they might see when you are together – perhaps you need to take naps, you can’t be too active or you get sicker, you have dietary restrictions (and why), or how just talking wears you out. Stay positive, matter-of-fact, and brief. Explain that you don’t want pity but just want them to understand your limits.

Accept That Some People Will Never Get It.
It took me many years of therapy and stress, but I have finally accepted that some family members will never get it – they just don’t have the emotional coping skills to deal with my illness in a healthy, honest way. I am OK with that. Certain people are never going to ask how I’ve been (for fear of what I might say!) or if I need to rest. Interestingly, though, since I gave up my expectations, some of them have surprised me in small ways. I learned that I can’t control their actions, but I can control my own response to them. Acceptance and peace feel a lot better to me than constant angst and bitterness.

I have also found that while the older generation may be a lost cause, I have great hope for the younger ones! Though their parents may not say anything about my illness, I always try to be upfront with the kids in my family. When they ask me questions – like why I need to nap or why I’m not eating dessert – I explain to them in a simple, straightforward way with a positive attitude. My niece was delighted to learn that wearing a heart rate monitor allowed me to have fun with her outside (within my limits) without worrying about getting sicker the next day!

Limit Time with Truly Toxic People
Though you can accept that some people won’t ever understand your illness, there may be people in your family who are truly harmful or abusive to you. In that case, it is best to limit your time with them and keep things on a light note when you are with them. Perhaps there is someone in your family who accuses you of “faking it” or someone who yells at you to just get up and do more. If you have already tried (once, maybe twice) to explain your illness to them and they persist, it may be time to just avoid them when you can. I am fortunate not to have anyone truly toxic in my family, so I decided that my family was important to me and that I could accept their avoidance behaviors because they aren’t harmful to me (once I changed my own responses to them).

Take Care of Yourself
When you are with family, take care of your own needs and don’t expect others to do so. I have found that low expectations are the key to good family relationships! Don’t expect much and you won’t be disappointed – and you might just be pleasantly surprised. Enlist someone close to you who understands your illness – perhaps your spouse or child – if you do need help during a family gathering. Mind your dietary restrictions without making a big deal of them, eating what you can and leaving what you can’t. I might ask the cook if the gravy contains milk, but otherwise I take care of myself. After our Thanksgiving meal, I quietly went upstairs to take my nap – my 16-year old cousin had kindly offered me her bed when I first came in that day (see what I mean about the younger generation?).

Relax and Enjoy Your Family!
Once you have let go of unrealistic expectations and accepted your family members as they are, it’s time to just relax and enjoy your family. I may not be able to help in the kitchen, but I can sit in the living room with my feet up and watch football with my family or sit and talk to my cousins…and go to a quiet room to rest when I need to recharge. Try bringing photo albums or home movies to look at during a family gathering so there is some quiet time built into the day for everyone.

Find a role for yourself. In the past decade, I have become the de facto Family Photographer. Photos and memories have always been important to me, so it’s a natural fit. I may not be able to participate in the post-dinner football game outside, but I can sit on the sidelines and take pictures. At the end of every year, I put my photos on a DVD (with my laptop while sitting in the recliner!) and give it to family members as a gift. When my niece and nephew were younger, I used to love to cuddle up with them and read to them – I even brought my own stack of holiday-specific picture books when we got together. They loved it, and so did I. Focus on the things you can do, rather than on your limits.

Enjoy your family gatherings this holiday season…and all year round!

Thursday, November 09, 2017

Throwback Thursday: Treating Herx Reactions

Copyright: antonioguillem / 123RF Stock Photo
Today's Throwback Thursday post is all about treating Herx reactions, something I have been focused on helping my son with lately (and for many years). A Herx reaction (also known as die-off) is basically a worsening of symptoms that occurs when you are treating infections, and it is very common in ME/CFS and Lyme patients. It's caused when the antibiotics or antivirals (or sometimes even antifungals for yeast overgrowth) kill off a bunch of "bugs" in your system that then flood into the bloodstream, causing a severe response from your immune system. It's a fact of life for everyone with tick infections and for most people with ME/CFS who treat tick infections, underlying viruses, or yeast overgrowth. Many patients stop treatment when they get worse, but that is a mistake because those infections are still active behind the scenes and will only make you sicker and sicker. Instead, you need to reduce the Herx reaction (worsening) so that you can tolerate the treatment.

Treating Herx Reactions or Die-Off - Helping Your Body to Detox
This post, Managing a Herx Reaction, provides more detailed information about Herx reactions and summarizes our own experiences in treating my son's Herx reactions (mine with both Lyme and antivirals were short-lived and not too severe). That post includes a long list of recommendations from many sources, including our Lyme doctor and our brilliant dietician/biochemist, that have worked well for our son. I just updated it today.

Last week, I read this blog post at Recovering Kids blog called DETOX the die-off and feel amazing again! (our roadmap to success), which includes even more information about Herx reactions, some of which I had never heard before. So, I can't vouch for everything listed there, but I wanted to share the post because it provides a lot of detailed suggestions. We will definitely be trying some of them.

Treating Underlying Infections
Finally, if you have no idea what I am talking about and have not yet looked into treating underlying infections yourself, I highly encourage you to do that because it often results in significant improvements for those with ME/CFS and sometimes even complete recovery. In fact, for patients who have tried other treatments and nothing seems to help, there are almost always infections behind the scenes preventing them from improving. Treat the infections, and everything gets much better!

The immune dysfunction in ME/CFS causes old viral infections to become reactivated and makes us especially prone to bacterial infections, so treating underlying infections often yields dramatic improvements. For many with ME/CFS, that means reactivated viruses that remain dormant in healthy people - things like Epstein-Barr virus that causes mono or another herpes-family virus called HHV-6 or CMV or various types of enteroviruses (that cause stomach symptoms in healthy people but can linger and remain activated in ME/CFS). This is a treatment pathway that often requires going to see one of the few ME/CFS experts, but is well worth the trouble because it can lead to significant improvement and sometimes even recovery. This blog post summarizes my own improvement after taking antivirals - my virus levels were fairly low (but positive) so my gains were correspondingly small-ish but still important, most critically, an increase in activity level and in mental clarity.

The other kind of infections that ME/CFS patients should look for and treat are the various types of tick infections (Lyme disease is one of those). Tick infections are very widespread now, occurring in every US state and on every continent except Antarctica. Our immune dysfunction puts us at even greater risk than everyone else. Blood tests are not very helpful in diagnosing Lyme and other tick infections - the very best tests for Lyme only detect it about 60% of the time and doctors rarely test for any other tick infections. So, if you have had a negative test for Lyme before, that tells you nothing, since it is so prone to false negatives (you can believe a positive result). We learned all of this the hard way. Our son got sicker and sicker over the course of 3+ years while we chalked it up to "just" ME/CFS. We finally took him to a Lyme specialist (the only way to find out for sure) and found that he had 3 different tick infections! With treatment, he has gone from mostly bedridden to attending college, working part-time, and living on his own. So, this blog post explains all the details of Why Everyone with ME/CFS or FM Should Be Evaluated for Tick Infections (including how to find a Lyme specialist near you).

Another common outcome of our immune dysfunction is Yeast Overgrowth. This is both due to the specific type of immune dysfunction common in ME/CFS and the fact that many of us need frequent antibiotics (due to recurrent bacterial infections). Yeast overgrowth is often a silent and stealthy factor in our illness - many people (myself included) don't realize it is an issue until they start to treat it and see how much better they feel. Keeping yeast overgrowth under control (that blog post lists many different approaches) helps my son and I both to feel less fatigued, less achy, and have significantly improved mental clarity (i.e. less brain fog).

So, now when you pursue treatment for your underlying infections, you will also know how to deal with any resultant Herx or die-off reaction!

What has worked best for you and your family for Herx reactions/detox?

Monday, November 06, 2017

Movie Monday: Carol

Sticking with my new policy of writing shorter reviews and catching up on my movie backlog in reverse order...I just watched Carol on Saturday night and enjoyed it very much.

Cate Blanchett is wonderful in the title role, as a glamorous wealthy woman in 1950's New York who is in the midst of divorcing her husband, Harge. She adores their little girl, Rindy. While shopping in a department store for Rindy for Christmas, Carol meets Therese, played by Rooney Mara, a young woman working as a store clerk but dreaming of more. Carol leaves her gloves at the counter, and Therese goes to her home (listed on the receipt) to return them. The two women are obviously attracted to each other, though Therese is currently in a relationship with Richard. He wants to get married, but Therese is reluctant. Carol brings light into Therese's life, and the feeling is mutual, but of course, an intimate relationship between two women is strictly forbidden in the 1950's, and Harge uses their budding relationship (and a past affair) as an excuse to demand full custody of Rindy, citing a "moral clause" to prove Carol is an unfit mother.

This is a beautiful, stylistic film that garnered 6 Academy Award nominations, bringing the holiday season in 1952 New York to life, as Carol and Therese fall in love and go on a trip together. Both lead actresses give deep, emotional performances, bringing out both the tenderness of their feelings for each other and the anguish they feel at being kept apart. It's a love story but also a tragedy, as Carol's much-loved daughter is kept away from her. The movie is based on the novel previously titled The Price of Salt by Patricia Highsmith in 1952 and retitled Carol in 1990. I never read the book, but the movie adaptation was visually lovely, romantic, and moving. It ends on a note of happiness, but that comes at a price.

Carol is currently out on DVD and is available for free on Netflix streaming. It is also available for $7.99 on Amazon or included free with a Showtime subscription through Amazon.

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.


Saturday, November 04, 2017

Two-Part Orthostatic Intolerance Article Published

This past month, I was hard at work on a 2-part article for ProHealth website on Orthostatic Intolerance (including POTS, NMH, and more), which has now been published.

You can read Part 1 here - it covers the basics of what OI is, how it affects people with ME/CFS, fibro, and Lyme disease, and how to easily diagnose it in any doctor's office.

Part 2 covers Treating OI, with a wide range of treatments reviewed, including both non-pharmacological approaches and medications.

Both articles include a list of references, if you want to know more - these are the studies that all the information in the articles came from.

Here on my blog, you can read more about OI and how to diagnose and treat it, plus our own experiences, on this recent Throwback Thursday post on Orthostatic Intolerance. There are links in that post to how to diagnose, plus various treatments that have worked for us.

OI is an integral part of ME/CFS and often present in fibro and Lyme patients, too. It is one of the few aspects of our disease that is easily quantifiable with a simple in-office standing test. Once officially diagnosed with OI (and knowing which types you have), then there are many, many different treatments to try. It can take a bit of trial and error to find just the right combination for you, but most people find OI treatments to be life-changing. They certainly have been for my son and I, allowing us to live active lives without crashing so much. Crashes from exertion are rare for both of us now, thanks to OI treatments.

Have you tried any OI treatments yet? What has worked best for you?

Thursday, November 02, 2017

Throwback Thursday: Treating Yeast Overgrowth

Thrush in the mouth Copyright: adam88x / 123RF Stock Photo
Both my son and I have struggled with yeast overgrowth - sometimes called candida - for many years. It is now fairly well-controlled through a combination of probiotics, other supplements, diet, and medication, but it took us both a long time and a lot of trial and error to get to this point.

Yeast overgrowth is extremely common in ME/CFS, due to the particular type of immune dysfunction inherent in our disease. Yeast or candida is a type of fungus that lives naturally in the gastrointestinal tract, including the mouth, and also in the vagina. However, yeast overgrowth occurs when that yeast grows out of control and takes over. This can occur anytime in your life but is especially prevalent for anyone with immune deficiencies (like those with ME/CFS) and anyone who takes (or has taken) antibiotics because they kill off all the good bacteria in the gut that normally keeps the yeast under control.

Yeast overgrowth is one of those sneaky aspects of our disease - it may be a big contributor to your symptoms without you even being aware that you have it! That's how it is for me - when it flares up, I get extra-exhausted with horrible flu-like aches, brain fog, mild sore throat and wonder why, when I haven't overdone and don't seem to have been exposed to any infections. It sometimes takes me a while to realize it's the yeast flaring up again. I get thrush in my mouth when it gets really bad, but some women get vaginal yeast infections and some don't have any obvious signs other than the worsened ME/CFS symptoms. Severe brain fog is a very common sign of yeast overgrowth (or other infections behind the scenes).

This blog post, Treating Yeast Overgrowth/Candida explains all about how to know if yeast overgrowth is a factor for you, why it occurs, and mostly how to treat it. It includes a long list of the treatments my son and I have tried over the years (many of which we still maintain now). I just updated this post this year, to explain how we've maintained control over yeast overgrowth now for many years.

Since yeast overgrowth in ME/CFS stems in part from our immune dysfunction, Treating Immune Dysfunction can also help to control it. That post includes several treatments that have helped my son and I immensely, with all aspects of ME/CFS, including yeast overgrowth.

Loads of high-quality probiotics, some supplements, and sometimes medication can all help to control yeast overgrowth, but diet is a very important aspect of its treatment. This post, Eating Paleo for Immune Disorders: Our Approach, explains all about our diet, which is a modified Paleo diet, with a heavy focus on reducing sugar, yeast, and grains (those things all feed yeast) to help keep our yeast overgrowth under control (our diet also helps with metabolism and mitochondrial function for better energy and brain function). That post includes lots of ideas, links, and recipes for low-sugar treats that are delicious!

So, those are our experiences with yeast overgrowth and the treatments that have helped us to get it under control.

Do you struggle with yeast overgrowth? Is it possibly a factor you weren't aware of? What has worked best for you to get it under control? Please share your experiences in the comments below, so we can all help each other!