Tick Infections Behind the Scenes in ME/CFS, Fibromyalgia & Other Chronic Illnesses

Why should people with ME/CFS, fibromyalgia, and other chronic illnesses care about Lyme disease and other tick infections? Because these infections are often behind the scenes in a wide variety of diseases and often go undiagnosed. In fact, Lyme disease is one of a dozen or so infections that have been identified as a trigger for ME/CFS (myalgic encephalomyelitis or chronic fatigue syndrome), meaning that 10% of the people who get Lyme disease will develop ME/CFS (and their underlying infection(s) may never even be diagnosed). And Lyme disease is often called The Great Pretender because it is often misdiagnosed as so many other disease--and there are over a dozen other tick infections that can cause even worse issues.  It's important--and urgent--to find out whether you have tick infections behind the scenes because when left untreated, they can cause permanent neurological damage. This is even more urgent (and likely) if you have any kind of joint pain or any sort of neurological symptoms.

 

Information for Those with ME/CFS, Fibro, and Other Similar Illnesses

It's not just that people are often misdiagnosed with MS, Parkinson's, fibromyalgia, and ME/CFS when they really have tick infections, but also that tick infections can be behind the scenes of any of these diseases (and more), making things worse. And, as I explained in the introduction, Lyme disease is a known trigger for ME/CFS, though the underlying infection may have never been accurately diagnosed (and that's like true for other tick infections, as well). Many, many people--including my son and I--have ME/CFS and also have tick infections (and same for fibro). In our cases, we had ME/CFS first and later got the tick infections, but the immune dysfunction of ME/CFS prevents us from fully getting rid of the infections (that's not necessarily true for everyone). 

In my blog post, Why Everyone With ME/CFS Should Be Evaluated for Tick Infections, I explain the many connections between tick infections and ME/CFS or fibromyalgia, plus details on symptoms, other tick infections, testing (and why it's not 100% reliable), treatments, and how to find a doctor near you. That post also include lots of links to additional information (and there are more resources and recent articles linked below). It also explains why a negative Lyme test doesn't mean you don't have Lyme.

If there are undiagnosed infections of any kind behind the scenes (which is very common), ME/CFS and/or fibromyalgia will continue to worsen and other treatments may not work until you address those infections. So, if you have tried various ME/CFS treatments, like correcting sleep dysfunction, treating OI, or improving immune dysfunction, and nothing seems to help you, you almost certainly have some sort of infections behind the scenes, and tick infections are one possibility to explore.

This post, Lyme Disease News: Testing and Treatment includes some newer developments in the field of testing for and treating Lyme disease that have improved things for me.

For those going through treatment of tick infections and experiencing a Herx reaction (i.e. characteristic worsening), my blog post Managing Herx Reactions explains what a Herx reaction is (it can also happen when treating other underlying infections like reactivated EBV and other herpes-family viruses), and lots of treatment options and other ways to help manage it and get through to the other side, when things start improving. 

For more on our own experiences (I have Lyme and my son has/had three tick infections), check out my video, Our Chronic Illness Story: ME/CFS and Lyme (watch on YouTube at the link or I'll include it below):

In this video from 2021, ME/CFS and Lyme: Tests, Treatments, and Improvement!, I review a recent relapse and what helped me to recover. Renewed treatment for my underlying Lyme disease was a part of that. You can watch on YouTube at the link or I'll include it below:

I also wrote a blog post about the same information, if you prefer to read rather than watch.  

 

General Information on Lyme Disease and Other Tick Infections 

Just last week, I read this article in the New York Times, The Tick Situation Is Getting Worse. Here's How to Protect Yourself. It features surprisingly accurate and up-to-date details (that's not always the case in mainstream media) on how fast various types of ticks and tick infections are spreading to new places where they didn't exist before. The old ideas that Lyme disease only occurs in certain states and countries is no longer true (if it ever was). Ticks and tick infections are present--and growing--in every state and on every continent in the world (except Antarctica). The article focuses on prevention and avoiding tick bites and infections and some symptoms to watch for.

Back in 2017, I wrote an article for the ThirdAge website, 7 Things You Probably Don't Know About Lyme Disease.  This article is still accurate, and it covers many common myths about Lyme disease and other tick infections with respect to symptoms, diagnosis, treatment, and the effects of these infections.

Two excellent expert resources that I linked to in that article include: 

• Igenex, the top testing laboratory for the latest and best tests, provides a lot of great information on their website, including Frequently Asked Questions about various tick infections and a Symptom Checker. They also have a great set of resources for Finding a Tick Infection Specialist Near You.
• Lyme Disease.org - This patient-powered website has loads of helpful information, like their Symptom Checklist that takes you step by step through a series of questions. Or click on Lyme Basics from the homepage for a long list of options for more information. They also offer detailed information on Lyme co-infections (all the other tick infections that the NYT article said are becoming more prevalent). 

 

I hope you find this information helpful. 

Have you looked into tick infections?

 

Has you or anyone in your family been diagnosed with tick infections? 

  

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

 

What Is ME/CFS? The Basics: Answers to Common Questions

The positive response to my 3-minute video short about ME/CFS for Awareness Day/Month was so great that I realized a longer video with more information about ME/CFS and long-COVID was needed. I searched online for the most commonly asked questions about ME, myalgic encephalomyelitis (also known as CFS or chronic fatigue syndrome) and recorded the video in a Q&A format, covering the basics. Note that I also explain in the video what long-COVID is and how it can be the same as or different than ME/CFS. 

In the video, I answer these questions:

• What is ME/CFS?
• What are the symptoms of ME/CFS?
• What does the name ME/CFS mean and where does it come from?
• What causes ME/CFS? 
• How prevalent is ME/CFS and who gets it?
• How is ME/CFS diagnosed?
• How is ME/CFS treated?
• Can ME/CFS be cured? 

You can watch the video on YouTube or I will include it below:

This video is perfect for sharing with friends and family to help them better understand how ME/CFS and/or long-COVID affect you.

Note that while I briefly discussed effective treatments for ME/CFS and long-COVID in the video, you can find a summary of ALL the treatments that have helped my sons and I here. 

 

Do you have other questions about ME/CFS and long-COVID not addressed in the video?

 

Have you had trouble explaining your illness to friends and family? 

  

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

ME/CFS & Long-COVID Treatment: Digestive Enzymes (Not Just for Digestion!)

Last fall, I was stuck in a bad relapse of unknown origin of my ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), and I was desperate to feel better. I consulted with my ME/CFS specialist, and after running some blood tests, she suggested I try digestive enzymes, based on recent research and the experiences of her and her colleagues in treating both ME/CFS and long-COVID patients. They helped! 

I'll provide some details below, but I want to emphasize that this was not a treatment for gastrointestinal (GI) symptoms. I really haven't had any GI symptoms as part of my ME/CFS since I discovered I was intolerant to dairy (like 30% of ME/CFS patients) and eliminated it from my diet.

 

Why Would Digestive Enzymes Help Those with ME/CFS and Long-COVID?

Many scientific studies, over many decades, have shown evidence that people with ME/CFS have dysfunctional immune systems. It's estimated that 70-80% of the immune system is in the gut. In addition, patients often have GI issues as a part of ME/CFS or long-COVID.  In recent years, many studies on ME/CFS have focused on the role that the gut microbiome plays in the disease. Cort Johnson of the excellent Health Rising website and blog explained this in an article on the gut microbiome and ME/CFS. You can read the original study that Cort based that article on here.

So, there is plenty of evidence showing that people with ME/CFS and long-COVID have dysfunctional gut microbiomes and that this can affect many aspects of the disease.

 

Testing

Last year, one of the tests my ME/CFS specialist ran for me was a full amino acid profile, which tests for the levels of various amino acids in the bloodstream. Amino acids are the building blocks of proteins, which are essential for a wide range of functions in every system of the body. There are two kinds of amino acids: essential that your body gets from foods and non-essential that your body makes itself.

My lab test results showed high levels of many of the amino acids. My doctor explained that this is likely because my body is unable to metabolize or break them down effectively. This is very, very common in ME/CFS and long-COVID. It leads to all kinds of issues because if we can't break our food down into the nutrients we need to function, that affects every system in the body. This is why so many of us need to supplement certain vitamins and minerals and other nutrients: our bodies aren't effective at breaking down the foods we eat to extract those necessary nutrients. 

 

Treatment

Based on my test results, and the experience of my doctor and her colleagues (all part of the US ME/CFS Clinician Coalition) in treating other patients, she recommended I start taking digestive enzymes. In particular, she recommended two approaches: a prescription called Creon, which contains the digestive enzymes protease, amylase, and lipase, and/or a supplement from Pure Encapsulations called Digestive Enzymes Ultra.

When I picked up the Creon prescription and read the label, it turned out to have the exact same ingredients as a supplement I was already taking, Pancreatic Enzymes (Vital brand), though the supplement had much higher doses than the prescription! My functional medicine specialist had recommended them to me the year before, based on stool testing results that showed the same thing as my blood test results: that I wasn't fully digesting or breaking down my food.

So, I never took the Creon and instead stuck with the Pancreatic Enzymes, and I also started taking the Digestive Enzymes. To save money, I get these and other supplements through Amazon and, once I'm sure I'm going to stay on something, I sign up for their Subscribe and Save option. Most of my supplements are delivered this way, once a month (you set your own timing for each item), so I get a 15% discount on all of them. That helps a lot.

 

Results

I think that starting the Digestive Enzymes helped me to recover fully from the COVID infection I got last July. When I started them in late August, I was already recovering but still had very low stamina, and after adding Digestive Enzymes, I was able to fully return to my "normal" ME/CFS baseline (which is pretty good and fairly active, thanks to many treatments).

In addition, I think there is plenty of evidence that taking these enzymes is likely to be beneficial, given the studies indicating that most people with ME/CFS and long-COVID have trouble fully metabolizing our food, that our gut microbiomes are often dysfunctional, that the gut has a direct effect on the immune system, and my own personal lab results from both stool and blood tests (plus the experts' experience in seeing these issues in many patients and seeing good results from adding enzymes).

I still take both of them every day - one Pancreatic Enzyme capsule and two Digestive Enzymes capsules (they're tiny) with each meal, three times a day. My son was also already taking Pancreatic Enzymes, but I told him what I learned, and he also added Digestive Enzymes to his regimen (he's doing very well and is working full-time!).

 

NOTE: For an overview of all the new treatments I tried last year and what helped (and what didn't), see my 2024 Year in Review). 

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.

 

Have you tried digestive enzymes yet?

 

Are there other treatments that help you?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

 

Short ME/CFS Awareness Day Video to Share

This morning, I posted a 3-minute video on all my social media channels for ME/CFS Awareness Day (today, May 12) and Awareness Month, all May. You can watch it on YouTube or I'll include it below:

 

I included a link to Solve ME/CFS for anyone who wanted more information (they have some great explanations of ME/CFS and long-COVID).

Please free free to share this video on your own social media or with friends and family.

And see my 2025 Awareness Day post for more ideas on how to help spread awareness today and all month, right from your home.

ME/CFS and Long-COVID International Awareness Day - May 12

 
May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). Read about the history of Awareness Day here. You can do a number of easy things from home to help raise awareness all month long, including: 

Check out the #MEAction website:

• Their #MillionsMissing2025 event is scheduled for May 12 in Washington, DC. Their US Toolkit includes more details, including how you can participate from home. Here's the Global Toolkit. And here's their Show Up From Home Toolkit.
• Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
• Post a Millions Missing or SOS graphic.
  
• Edit your profile pics on social media with a #millionsmissing frame. Here is the #MillionsMissing profile pic frame app.
• Order a t-shirt or other item to show your support with slogans like Millions Missing SOS or Still Sick, Still Fighting. 
• There are lots of other options listed in their toolkits linked above.

There's more information on this ME Awareness Day Facebook page.

Join in Blue Sunday Tea Party for ME on May 18, 2025, by wearing blue, donating to ME/CFS causes, having tea and cake, and sharing on social media. Details here.

As mentioned, I also use this day/month to tell my friends and family about ME/CFS. I use my main Facebook account for just friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:

"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). We've gone from 2 million with ME/CFS in the U.S. in 2019 to more than 20 million (including many children) with the addition of long-COVID. Most of you know that my son and I both have ME/CFS and Lyme, but you may not know what that means. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 23 years. If you see me out in the world or even just look at my photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see me out and about when I am having a good day, and even then, I need a LOT of extra sleep, I can't get through the day without a nap, I need piles of pills to be able to function, I almost always have symptoms, and I have to carefully monitor and limit my activity. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. COVID or even a simple cold can knock me out for months. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people--and very few doctors--understand ME/CFS, so Awareness Month is really important. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more. If you know a friend or family member who has or might have ME/CFS or long-COVID (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far.

https://solvecfs.org/me-cfs-long-covid/about-the-disease/ "

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. What is ME/CFS? by Solve ME/CFS Initiative
2. What Is ME/CFS? by Phoenix Rising
3. The CDC's information on ME/CFS

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know inflation has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
• Solve ME/CFS Initiative - donations made through June 30 will be doubled!
  
• Open Medicine Institute
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

 

Happy Awareness Day/Month!  Help to spread the word!

(feel free to link to this page or share its information) 

Enjoying a Road Trip with Chronic Illness: Travel Tips

After our month-long road trip to Texas and back with our camper (videos at the link), I put together a short video about how I manage--and even enjoy!--traveling with chronic illness. The focus of this video is on road trips, by car or RV, though I previously wrote a blog post with Tips for Air Travel.

In this new video, I cover routines, rest, medications & supplements, and more. 

I spend lots of time here - especially restful when surrounded by nature!

My nap spot in the backseat of the truck.

You can watch the brief video on YouTube or I will include it below:

One viewer commented that heated seats in the car help with her back pain, which reminded me of a couple of tips I forgot to include:

• I brought our microwavable heating pad along, which I needed for my low back after long hours in the car. Our camper has a microwave, but many hotel rooms or rentals do, too. This kind of pad can also be frozen to use as an ice pack. I love this one, which is well-made, with sealed edges, so it holds up for a long time.
• I have an awesome back cushion that I use in the car. I initially bought it mainly to move me forward a bit when I'm the one driving our truck (I'm only 5'1"), but it's so comfy that it also helps when I'm in the passenger seat, and I also use it in my recliner at home when I'm sitting up to work on my laptop. I got one for my step-mom, too, who lives with chronic pain, and she loves it!

I want to hear YOUR tips!

 

Are you able to travel? If so, what helps?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram. 

 

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.

News From Our House: Back from a Month-Long Trip

I haven't posted here in almost two months, so I thought I'd start with a catch-up and update on how we're doing.

My Health

When I last posted here at the end of February, I'd been battling a cold, followed by a sinus infection, and was worried about recovering in time for our planned month-long trip in early March. Fortunately, I did recover in time, so we left on March 10, as planned.

My health remained stable and quite good throughout the long trip, thank goodness! My stamina wasn't great after a month on the couch (and a few weeks before that, several months on the couch), but I was able to enjoy the trip.

We've been back home for a couple of weeks now--and went away again this past weekend for Easter--and my health has remained steady and relatively well. In fact, I met up with a close friend today that I hadn't seen in several months, and we walked (slowly) for about an hour!

The only reason I can manage a trip like that, not to mention daily life and walks, is because of the wide variety of treatments that have helped me over the years to correct sleep dysfunction, treat orthostatic intolerance, improve immune function, treat yeast overgrowth, and most recently, treat hypothyroidism (as well as many other treatments for other aspects of ME/CFS). I have an overview of all of the treatments that have been effective for my son and I on the Effective Treatments for ME/CFS page here. 

 

My Son's Health

I think it's been awhile since I reported on my son's health. He deserves his privacy, but I just wanted to let you know how well he's doing these days. Like me, he has ME/CFS and Lyme disease, though he also has another tick infection, bartonella (and he used to have babesia, too). He's 30 now and has been living on his own with his girlfriend since 2020. He's been working full-time for a year now, which feels like an absolute miracle to us! In fact, recently, he's been working six days a week, and his job requires both physical and mental exertion. I was concerned about this, but when I asked how he was doing during the holiday season, he said it's the best he's ever felt! (He got sick at age 10, so this is all he remembers.) There's no miracle cure; he definitely still has ME/CFS and the tick infections, but he's doing well on all those same treatments that have helped me. In fact, these days, he's doing better than I am--I certainly don't have his stamina!

 

Our Trip

We were away for a full month, traveling with our camper through 12 states, from our home in Delaware to Texas and back. This trip was all about visiting friends and family, and we had 19 different visits in all! It was fabulous to reunite with old friends and family members we hadn't seen in many years. Plus, we visited some old favorite places, like New Orleans where we lived in the 80's, and explored some new-to-us places, too. And we stayed in some stunningly beautiful places, with several campsites right on the water--so peaceful! All in all, it was a really amazing trip.

You can see and hear more about our trip on my Texas Road Trip video playlist on YouTube (which includes 4 weekly vlogs plus some 1-minute video shorts) or I'll include the first video, from Week 1, Delaware to New Orleans, below:

The videos include lots of peaceful nature scenes (we were camping, after all), plus photos and videos of all the places we went and some tips on traveling with chronic illness.

How did I do all that with ME/CFS? Well, those treatments I linked to above are the biggest reason why I can travel (and do other things). But sticking to my routine, including diet, and getting a lot of rest is very important, too. You might think, looking at the photos and videos (as did many of my friends and family!), that I'm not very limited, but every day included 10 hours of sleep, an afternoon nap, and plenty of downtime. In fact, traveling with our camper helps tremendously! It's our little home-away-from-home, and it helps so much to have a comfortable, familiar sanctuary where I can rest and recover. There are some video clips within those trip vlogs about traveling with chronic illness, but I hope to pull together a separate video on that topic in the next week.

As for protecting myself against infections while meeting up with SO many people, I brought two big boxes of masks with me and wore them anytime I was in public or with other people. We also tried to spend as much time as possible outdoors. When friends or family wanted to meet at a restaurant, I asked them to choose one with outdoor dining. 

So that's me ... 

I want to catch up! How have you been?

 

Are you able to travel? If so, what helps?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

Battling a Virus & Sinus Infection on Top of ME/CFS

It's been a rough few weeks for me! In spite of rarely going out and wearing a mask when I do, I caught some sort of respiratory virus in early February (probably from my rare dinner out in a restaurant!). It didn't feel like the flu or COVID, as the symptoms developed gradually (those two both tend to hit hard all at once). Just to be sure, I tested for COVID four times (in the past, I haven't tested positive until day 4 of symptoms)--all negative.

I mostly just had sinus congestion and was exhausted, so I treated the symptoms and added in extra herbal antivirals, plus some extra vitamin C, vitamin D3, and zinc, to support my immune system. After about 10 days, I started to feel better, which was pretty surprising. It seemed I'd had a normal cold, lasting about the normal time--crazy! I haven't had a plain old cold in about 20 years; I don't normally catch viruses (other than COVID, since I don't make the antibodies against it). I had two days of feeling really good, almost back to "my normal" baseline. Then, the sinus congestion worsened again, and I felt like I'd been knocked down, totally wiped out again.

That pattern--mostly recover from a virus and feel good, only to suddenly worsen again--usually means a secondary bacterial infection (which is also pretty normal!). For decades, I got bacterial bronchitis 5-6 times a year, but this was not in my chest but definitely in my sinuses. I sent a note to the Nurse Practitioner now caring for me, since my doctor retired in January. But it was a Saturday night, so I also started taking antibiotics I had here (a recent prescription I hadn't used). I knew it was the right one because I have so many allergies and intolerances that there are only two types I can usually tolerate, and I knew which one was used for bronchitis and which one was preferred for sinus infections.

The congestion began to improve again in a couple of days, though I am still pretty wiped out. I avoid antibiotics if at all possible, since they make my chronic yeast overgrowth much worse (that's why I had some I hadn't taken last year). There are always complications with this crazy disease--nothing is ever simple! At this point, I'm not sure if I'm still worn out from the infection or if it's now due to yeast overgrowth, but I am a little better than I was yesterday. I know I need to stay on the antibiotics for another day or two, to make sure the sinus infection is completely cleared up--I wouldn't want to have to take another round of them!

I made a chronic illness vlog during the worst of the virus. It provides a peek into my daily life when I'm badly crashed, as well as the treatments I use to ease viral symptoms and help me get over a virus faster, plus some insight into my usual ME/CFS treatments as well. You can watch the vlog on YouTube or I'll include it below:

I finished recording that vlog last Wednesday, and Thursday and Friday were my good days! 

I'm getting pretty nervous because we're supposed to be leaving on a long road trip to Texas with our camper in less than two weeks (our son will be here to watch the house). We have plans to visit lots of friends and family and have made campground reservations and other plans, so I really hope we don't have to cancel. Hopefully, I will be feeling better well before then so we can get ready. I will post some videos to my YouTube channel from the road but may not be able to post anything here on the blog.

How do extra infections on top of your chronic illness affect you?

 

What helps you?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

Life with Chronic Illness: Finally Setting Goals for 2025!

Life with ME/CFS is always unpredictable! My last post here was 2024 Year in Review: Still Riding the Chronic Illness Rollercoaster! That was not only a summary of how I felt last year and what caused challenges for me but also a long list of treatments (old and new) that I tried or changed last year, what worked and what didn't. Since then, I recorded a video version of that post, so if it was too much for you to read--or you just have an easier time with video--you can watch my 2024 Year in Review (including the treatments I tried) on YouTube or below:

Once I had finished summing up last year, I was finally ready to start planning and setting goals for 2025 ... in February! 

I've written and talked extensively about Setting Goals When Chronically Ill: Improving Your Life in Tiny Steps. You can read the full chapter excerpted from my book here on the blog or watch the video version of it.

But this year, I was feeling overwhelmed by it all, especially since I didn't even start thinking about the new year until we were a month into it! I expressed these frustrations in a video, How Do You Juggle It All? Without Feeling Overwhelmed. Based on the comments, I think a lot of people--both healthy and sick--could relate to my feelings. Watch it on YouTube or below:

My own goals process had become more and more complex over the years, so this year I decided to take my own advice! I focused on only a few objectives for each of my Lifetime Goals and really tried to narrow my attention to tackle that feeling of always being overwhelmed. And to keep my limitations in mind.

Given the ups and downs in my health last year, health remains a big focus for me (of course). I also got rid of perennial goals that have become a part of my normal routine, like diet, walking (when I am up to it), daily yoga stretches, and resting when I crash. What I was left with, under my goal of optimizing my health (given my illness) was:

• Set up mold inspection & follow-up on results
• Continue to avoid infection risks
• Find new primary care doctor (mine of 23 years just retired!)
• Talk to my ME/CFS specialist about my changing immune dysfunction
• Try therapy for dysfunctional family relationships

I have similarly streamlined goals for the other areas of my life, with a big focus on traveling more this year with my husband and our camper.

Things were going quite well with my new approach, and I was feeling less overwhelmed and stressed. Then, a few days ago, some viral symptoms started. I haven't had a cold or other everyday virus in 20 years due to my immune system over-reacting to most viruses. I immediately thought it must be COVID (which is in a class of its own, plus I don't make many antibodies against it). Three days in, I still feel like I have a cold. It's not nearly as severe as my bout of COVID last summer (and I've had two negative tests so far). I am completely mystified because this just doesn't happen to me, but I am hopeful I will recover in a short-ish time. 

Meanwhile, I am resting a lot, ditching all those carefully thought-out plans for the moment, and being very, very cautious. I'm following my own advice and upping the doses of all my herbal anti-virals. I have no idea what's going on with me, but I'm hoping for the best. The first of our month-long road trips is supposed to begin in less than a month, so fingers crossed!

How have you been?

 

Do you struggle with feeling overwhelmed?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

2024 Year in Review: Still Riding the Chronic Illness Rollercoaster!

For the second year in a row, I'm referring to the past year as a rollercoaster (in fact, Riding the Chronic Illness Rollercoaster is the name of a chapter in my book!) because that's the best description for it, with major highs and major lows last year in my life with ME/CFS and Lyme. In this post, I'll provide a brief overview of my year and what caused those ups and downs, review the many different treatments I tried (or restarted or stopped) and what helped and what didn't. I also made a video summary, if you prefer to watch (I'll link it here after it's edited and posted or you can check my YouTube channel).

NOTE: I like data and am an analytical person. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" Or you can watch my short video, Chronic Illness: Tracking How I Feel, Symptoms, and Treatments. I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. I also rate my exertion each day on a 1 to 5 scale. And for details on the process I use for goals, which focuses on taking very small steps toward what I want in my life, see my video, Setting Goals When Chronically Ill (Improve Your Life in Tiny Steps).

 

Overview of My Health in 2024

Average How I Felt = 2.5 (1 is good; 5 is bad)

• Same as 2023.
• My best months were 2.1, and my worst was 3.5 (rollercoaster!).
  

Average % crashed = 14% (meaning I was couchbound/bedridden 14% of the time)

• Crashed = a 3.5, 4, or 5 on my scale, unable to function, stuck in bed or lying on the couch.
  
• The average doesn't tell the whole story because there were six months without a single crash day and months where I was crashed more than 50% of the time.
  

Average exertion = 3.8 (on a scale of 1 to 5)

• Same as 2023.
  
• Again, there were good months and bad. 
  

Month-by-Month Changes & Why:

January to June - I felt great, not a single crash day in six months! My average "how I felt" each month was 2.1 or 2.2, which is very good for me. My average exertion was 4 on a scale of 1 to 5! I was active and feeling great and not crashing at all.

July/August - I got COVID in early July (my second time), and my crash-free streak came to an abrupt end. I was very sick but got on Paxlovid immediately (see treatments below). I started to recover in August.

September - By the end of September, I was fully recovered from COVID and back to my excellent baseline of the start of the year, able to be active again without crashing and feeling good every day.

October to December - Around mid-October, I went into an ME/CFS relapse, with severe flu-like aches every day (a sign that my immune system was over-active). I have no idea why it started; it's likely I was exposed to something (someone's cold, for instance). I was still in terrible shape by Christmas but finally recovered back to a good baseline in the second week of January, the relapse ending as mysteriously as it started.

 

Treatments - What Helped & What Didn't

Treating Hypothyroidism in 2023 - I spent all of 2023 working with my primary care doctor to try to effectively treat very low thyroid function. I got lab tests every two months, she adjusted my meds based on the results, and by the end of the year, I was feeling much, much better with great energy. In early 2024, I continued that treatment and gradually added Iodoral (iodine supplement), which also helped. All of this is explained in detail in my Diagnosing and Treating Thyroid Dysfunction post (a very common issue in ME/CFS and long-COVID). I also lost 19 pounds just from treating hypothyroidism, with no other changes. Helped a lot.

Carnivore/Keto Diets (low carb) - At the start of 2024, I changed my diet dramatically to try to get yeast overgrowth under control (I was already doing everything else on the list in my Treating Yeast Overgrowth post.) I ate a mostly carnivore diet for the first three months, and I immediately felt much, much better (the end of 2023 had been rough, too, due to yeast). In April, I transitioned to a keto diet (I explain paleo, keto, and carnivore diets in this video) and kept that up. I lost an additional 7 pounds from the diet changes, and my cholesterol and triglycerides have never been lower! My husband, who is healthy, lost 20 pounds just from the diet changes. Helped a lot.

Changed Probiotics & Added Pancreatic Enzymes Based on Test Results and Goals - I worked with our functional medicine specialist (someone who looks at the body as a whole instead of just one system). She did a Gut Zoomer test for me (stool testing offered by Vibrant Labs) which provided a lot of interesting information. Based on my results, I started pancreatic enzymes (see Digestive Enzymes below) and switched to different probiotics, based on both my test results and my goal of controlling yeast overgrowth. Helped with controlling yeast.

Stopped Inosine - Inosine is an immune modulator that helped my son and I for over 15 years (read more about inosine and how to use it here). I had been taking a break from it (necessary to keep it working) and when I tried to restart it last year, it seemed to overstimulate my immune system and maybe make my yeast overgrowth flare up. I've noticed that my immune dysfunction in the last few years is more overactive/up-regulated, where it used to be more of a mixed bag. So, for now, I'm not taking it. But it helped for decades, and I will definitely keep it as an option. For now, stopping it helped.

Paxlovid - This was essential to my quick recovery (for someone with ME/CFS) from COVID last year. When I got COVID in 2022 and Paxlovid was not available, it took me 6 months to recover back to baseline. This year, it took about 2 months - big difference! You can read more about my experiences with COVID and Paxlovid here. Helped a lot.

Oxytocin Nasal Spray - This is one of several new treatments I tried last year that my ME/CFS specialist recommended, based on new evidence or research. Many articles have been written about oxytocin (often called the "feel good" hormone) possibly being helpful for those with ME/CFS, long-COVID, and fibromyalgia. It didn't help me--and maybe made me feel worse--but it is helpful for some. Didn't help me.

Digestive Enzymes - Another new treatment suggested by my ME/CFS specialist, based on recent research. The studies showed that people with ME/CFS and long-COVID don't fully digest our foods, so digestive enzymes can be helpful. She recommended a supplement, which I got, and also prescribed prescription enzymes. When I picked up the Rx, I found that its ingredients were identical to the pancreatic enzymes I'd been taking all year, except that the supplement had much higher levels of each enzyme. So, I kept up the pancreatic enzymes, added the digestive enzymes, and didn't take the prescription. I think this is what helped me recover that last bit after COVID so that I was feeling good and able to be active again without crashing. Helped.

 LOLA (L-ornithine/l-aspartate) - Again, my ME/CFS specialist suggested this blend of two amino acids based on recent research into the metabolic changes in ME/CFS and long-COVID (read more here). I plan to write a blog post about this, as it is attracting a lot of attention. It didn't seem to help me, but I tried it in the middle of that awful relapse when nothing was helping, so I may try again. Didn't help me but is helping some others.

Valtrex - This antiviral (generic name is valacyclovir) works against all herpes-family viruses (like EBV, HHV-6, CMV, HV-1, etc.). Since it's known that the immune dysfunction of ME/CFS makes these old, dormant viruses reactivate, and my doctor and I knew my immune system was "stuck" in an overactive state, I tried 3 months of Valtrex, but I guess that wasn't my problem this time. It helped me a lot in the past (back in 2006), especially with improved mental clarity (mostly eliminated brain fog) but didn't help this time - again, nothing was helping in those last months of the year! Helped me before but didn't help me this time. 

Prednisone (steroids) - Steroids should be used in ME/CFS with caution, only in specific cases where it's indicated, and only for short periods of time. Again, my doctor and I could tell my immune system was stuck in an overactive state, and prednisone suppresses the immune system, so we hoped it would calm the immune system down for me. Since most with ME/CFS (like me for the first 18 years or so) usually have an immune system that is partly overactive and partly underactive, steroids are not normally helpful and could be dangerous. I tried two rounds of just 5 days each. While it didn't immediately end my relapse, I did see a small improvement after each round (though I don't feel good while I'm on them and need extra beta blockers because it raises my heart rate even more). Probably helped, I think.

Stopped Low-Dose Naltrexone (for now) - As you can see, I tried pretty much everything those last few months! I was desperate. On the theory that any treatment for the immune system might be too stimulating while my immune system was stuck in this overactive state, I temporarily stopped taking LDN. Note that I have been taking it for about 18 years now, and it helped me tremendously for a long time. For now, I'm taking a break. It may be only coincidence, but my relapse finally ended about a week later. I will definitely try to restart it at some point. More info on LDN, how it works, and dosing.  I think it helped?

 

As you can see, I got pretty desperate at the end of the year and tried everything I and my doctors could think of! And my relapse may have ended, much like it started!, coincidentally for mysterious reasons I don't know. But this is why I track how I feel and the treatments I try, to try to see cause and effect.

So far, in 2025, once I got past that relapse around the second week of January, I have been feeling really good, just like during the first six months of 2023. My "how I feel" score has been a steady 2 every single day since the relapse ended, and I have been gradually, carefully increasing my exertion levels again. As of this week, I am walking about 20-40 minutes almost every day (with my heart rate monitor on) and am back to doing small on-the-floor strengthening routines for upper body, lower body, and core three times a week ... and not a single crash! 

Keep in mind that this is all very good for someone with ME/CFS. I still need 9.5 hours of sleep a night (but not 10.5 hours like the past few months), a nap every afternoon, and am still careful to stay within my limits--but those limits are wider now. We are making a lot of travel plans for 2025, so I am hoping my relatively good health continues!

So, that was my 2024.

How was last year for you?

 

What treatments help you?

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram.

Favorite Movies Watched in 2024

Once again, I reviewed just 9 movies in 2024, in part because there is so much great TV to watch now. I only review movies that I really enjoy, so any movies on my entire 2024 list (below) are worth watching, not just my top picks. Also, it's almost impossible these days to label a movie in a single genre, so I included some explanation for most of them.

As in years past, my top picks in each genre are just below and my full list of movies reviewed last year  is further down. To see all of the movies I have reviewed on my blog--a considerable list--check out the Movies tab, where they are listed by genre (keeping in mind there's a lot of cross-over). Links go to my reviews, with a trailer. Note that where each movie is available might have changed, since I first reviewed it, so double-check to see where you can watch it now.

 

Best of the Best Movies Watched in 2024

Note how many of my top picks were adapted from books:

Best Action/Suspense/Thriller

Stillwater 

Matt Damon is excellent as a father from Oklahoma trying to save his daughter who's been imprisoned in France. Combines family drama, mystery, and legal drama.

 

Best Drama

Can I declare a 4-way tie? All of these (see below) were excellent and recommended (how does the Academy decide?).

Killers of the Flower Moon 

Outstanding in every way, with an all-star cast and fabulous cinematography. An historical drama about mysterious murders of Indigenous people in early 1900's Tulsa. Based on the nonfiction book by David Grann.

 

 Best Comedy

Probably our favorite movie of the year! This warm, thoughtful, entertaining movie about books, writing, and the publishing industry is also laugh-out-loud funny. Based on the novel Erasure by Percival Everett, proving he was brilliant even before James.

American Fiction

Best Sci Fi

I was tempted to pick A Quiet Day (see below) because it was more my style, but there is no question that these two movies, based on the best-selling novel, are epic sci fi masterpieces.

Dune and Dune Part 2

 

 

All Movies Reviewed in 2024

All of these are worth watching! See the Movies tab for more great movies.

Action/Suspense/Thriller

Hit Man (thriller with romcom elements)

Stillwater (also a family drama)

 

Drama

The Holdovers (funny, too)

Killers of the Flower Moon (suspenseful historical drama)

My Old Ass (but also very funny)

Next Exit (sci fi setting with focus on characters and plenty of humor)

Comedy

American Fiction (also a warm, thoughtful drama)

 

Sci Fi 

Dune and Dune Part 2

A Quiet Place: Day One (sci fi thriller with focus on characters)

A Look Back at Travel and Outdoors in 2024

Last week, I put together a highlight reel of all of our outdoor trips from last year, a Travel Year in Review. We travel with our little camper--our home away from home--so we go at our own pace and usually have very relaxing trips. It's so rejuvenating to get outside and spend so much time surrounded by nature; it's very peaceful and provides a lovely break from the usual busy, online life I lead. My illness did interrupt our travels a couple of times last year, which I mention in the video, but we were fortunate to be able to travel to some lovely places and surround ourselves with natural beauty.

We took six camping trips in 2024 to various state parks in Virginia, Pennsylvania, New York, and Delaware--mostly close to home or within an easy day's drive. We also visited some local attractions, including bookstores, a natural history museum, a historic small town, and a historic site (which we happened to visit on an important anniversary for the site). The video provides an overview of all of that, with lots of footage of peaceful nature scenes: waterfalls, forests, lakes, running streams, and gorgeous fall foliage. I hope you enjoy vicariously coming along with us.

You can watch the video on YouTube or below:

In other news, my three-month-long relapse finally ended a couple of weeks ago! I have slowly been coming back to life, taking short walks, getting out of the house, and even seeing friends (carefully, of course).

However, being in such bad shape for so long put me way behind on ... well, everything! I'm working to catch up, so I hope to finally take a look back at my health in 2024, including what helped (and what didn't), so look for my annual health review soon.

Were you able to travel or spend time outdoors in 2024?

What are your favorite places to visit or outdoor spaces to relax?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.

In other news, my three-month-long relapse finally ended a couple of weeks ago! I have slowly been coming back to life, taking short walks, getting out of the house, and even seeing friends (carefully, of course).

However, being in such bad shape for so long put me way behind on ... well, everything! I'm working to catch up, so I hope to finally take a look back at my health in 2024, including what helped (and what didn't), so look for my annual health review soon.

Were you able to travel or spend time outdoors in 2024?

What are your favorite places to visit or outdoor spaces to relax?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter and Instagram.