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.

 

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.

Diets Recommended for Chronic Illness: Paleo, Keto, Carnivore

I finally edited and uploaded my video on the three diets most often recommended for ME/CFS, long-COVID, and other immune disorders: paleo, keto, and carnivore diets.

The video describes each of these three different diet options in detail, including what each entails, how they can benefit someone with chronic illness, and lots of ideas on what kinds of foods to eat, with plenty of suggestions for meals, snacks, and recipes. All three of these diets are often recommended for a wide variety of medical conditions, including immune disorders like ME/CFS and long-COVID, autoimmune disease, and any health problem that involves inflammation. They are all low in inflammatory foods, low in foods likely to exacerbate food allergies or intolerances (which are very common in ME/CFS and long-COVID), and good for those with yeast overgrowth (also very common in ME/CFS due to our specific kind of immune dysfunction). Surprisingly, these diets are also very tasty, with a wide variety of flavors, and are easier and less work than a traditional diet.

We have tried all three and have seen benefits in reduced symptoms, increased energy, and better control of yeast overgrowth. We ate paleo for about a decade or so, and I wrote a detailed blog post about the paleo diet, if you prefer to read about it. However, as I explained in the video, I now know it was a mistake to make exceptions to it, so ignore the modifications I talk about in the post! When I have more energy, I'll update that. It worked well for us for a long time and might have continued to work for me, if I'd been stricter with it. At the start of 2024, I ate mostly carnivore for three months, which helped to get my yeast overgrowth under control. And since April, I have been eating more of a keto diet. My husband has also been eating keto, all year. We both lost weight (though that was not my intention), and my cholesterol and triglycerides are the lowest they have ever been, by a lot!

You can watch the video on YouTube or here:

These diets have definitely helped my son and I over the years. In fact, discovering my son was severely gluten-intolerant in 2020 and getting him on a gluten-free diet (which all of these are) was a key to his current excellent condition. Eliminating gluten and following a paleo/keto/carnivore-ish diet (he eats sort of a mash-up of the three these days) helped to not only improve his gastrointestinal symptoms but also significantly improved all of his symptoms. Since June, he has been working a fairly rigorous, physical job in the field he studied full-time! It still feels like a miracle to us, but he says it's the best he's felt in as long as he can remember (he's 30 now and has been sick since age 10).

We are still learning, so I would love to hear about your experiences (or your questions).

Have dietary changes helped you?

 

Have you tried any of these diets?

 

Please share your experiences with diet or your comments and questions.

You can leave a comment below.

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

Chronic Illness Vlog: A Week in My Life During a Crash (Plus, Nature!)

I've been stuck in a mysterious relapse of my ME/CFS for the past month. I've had flu-like aches every day. I thought that--like last fall--it was due to yeast overgrowth flaring up again, but stronger antifungals and a stricter diet aren't having the effect I'd hoped. I'm a little better, but still achy. Since that is an immune symptom that is a warning sign for me, I have been lying low, not going out much, no walks, and spending a lot of time on the couch ... and in my reclining chair on my deck.

I made a vlog last week that gives you a peek into my life with chronic illness during a down week (though, admittedly, not as bad as in the past for most days last week). I talk about what treatments have worked in the past and what I am trying now. And I included some nature footage, so you can enjoy the sights and sounds of nature, too. You can watch it on YouTube or here:

And if you enjoy nature--or want to improve your health!--I will also include my recent outdoor vlog from our last camping trip of the season, at Trap Pond State Park in Delaware, with beautiful fall foliage. Enjoy the peaceful, soothing videos and photos on YouTube or here:

Did you know that scientific research shows that just looking at pictures or videos of nature has measurable positive effects on both mental and physical health? It even improves immune function! So, enjoy this brief respite in nature. Then, open your window or go outside, if you can manage it, to experience nature in your own backyard (or porch or patio or balcony). I'm in my reclining chair on the deck as I type this. It always calms me and makes me feel better.

How was YOUR week?

And how do you enjoy nature?

Please let me know in the comments below.

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

2024 Mid-Year Update: Yeast, Diet, No Crashes!

 

While I often mention how I'm doing at the start of blog posts on other topics and in my chronic illness vlogs, I thought it was time for a more comprehensive update. Besides, we just passed the halfway point for the year (!!), so the timing is right. The last time I focused on my own health here on the blog was My 2023 Year in Review back in February, so I'm due for an update!

NOTE: My updates below refer to ratings of how I feel. 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. At the end of each month, I tally up the average of how I felt and also the % of time I spent crashed (a 4 or 5 on my scale). I also rate my exertion each day on a 1 to 5 scale.

 

How I Felt the First 6 Months of This Year

Simply put ... great! It felt like a miracle after my very difficult last three months of 2023, but I've been greatly improved since the start of the year (that's not coincidence--see below for what's making a difference). Most amazing of all: 

I have not had a single crash day in 2024 so far!

For comparison, last November I spent 50% of my time severely crashed, mostly couchbound, and unable to do much of anything. My very few worse days in 2024 have been rated 3--feeling a bit run-down but still able to function. And those were few and far between and always related to yeast overgrowth (see below). 

Even more incredible is that I have been very active so far this year--able to take walks most days, get back into a strengthening routine, go on long (for me - over an hour) hikes with my husband, and even go shopping. I danced at a wedding last month! And with all of that activity, I have not even once worsened from exertion intolerance. It's truly stunning to me.

My rating (1 to 5, with 5 being worst) for the past 6 months has been a steady 2.2. I haven't been that good since 2017. Last year, my average was 2.5 and 2.9 in 2022. 

It's all been good news, and it's been such a joy to be living my life again, able to get together with friends, enjoy my family, and get caught up with work and home.

So, that leaves the big question ... WHY?

Enjoying a 90-minute hike two weeks ago!

Factor #1: Normalizing Thyroid Function

I spent all last year working with my primary care doctor to find the best treatments for my hypothyroidism, after we realized that my thyroid labs were about as low as they could get. It required a lot of trial and error--and patience and persistence--to get new labs every two months, adjust the treatments, and wait to see the effects. But it was well worth the effort. By fall of 2023, my numbers were finally in the normal range for both T3 and T4, I had settled into a stable dose of two medications, and my energy had improved. I then added iodine, which is essential to thyroid function, which helped me to further improve. 

Most surprisingly (to me) was that I lost about 20 pounds last year just due to treating thyroid dysfunction. I made no other changes to diet or exercise (I was actually less active for other reasons explained below)--the weight just slid off me, bringing me back to my pre-illness (22 years ago) weight. What's interesting to me is that I had gained that extra weight gradually, a few pounds a year, even though I was eating a restricted, healthy diet and exercising as much as I was able. That tells me that my thyroid had been dysfunctional for many years, and we missed it due to not testing the right things.

I summed up all the lessons I learned in my post, Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID because thyroid dysfunction is extremely common in our diseases, due to endocrine dysfunction. 

 

Factor #2: Yeast Overgrowth and Diet Changes

As I said, by last fall, my thyroid function was almost normal and I had more energy ... but I was still badly crashed and very sick. The reason why was a mystery to me, and I tried everything that had helped in the past to no avail. For the last three months of the year, I had constant flu-like aches, a sign of immune activation and an indication that my ME/CFS was badly flared up. I had more energy, but I felt awful, and if I did anything at all, I got even worse.

Finally, in mid-December, I saw my functional medicine specialist and told her what was going on. I explained that yeast overgrowth was a chronic problem for me (and many others with ME/CFS, due to our immune dysfunction) but that I was already treating it. She asked me to pull my mask down and stick out my tongue and told me I still had visible thrush in my mouth. I was stunned because I take piles of probiotics every day, prescription antifungals daily, and thought I was eating a strict diet. She questioned me a bit about all of that and said that since nothing else was working, I'd need to get extremely strict with my diet--no carbs at all--in order to starve the yeast.

I was desperate, so I did as she said. She recommended a carnivore diet, which is just as it sounds: meat, fish, eggs (a little high-fat dairy is also OK but I'm dairy-intolerant). Within 10 days of changing my diet, those relentless flu-like aches finally disappeared (just in time for Christmas).

I stuck mostly with carnivore, with just a few bites of cruciferous veggies or avocado each day--what I called 97% carnivore. After three months of that, I transitioned to a more keto diet and have kept that up. For me, that means more veggies but still no grains, no sugars at all, and no starchy vegetables. I explain more about my experience with the carnivore diet in this video. Next week, I hope to post a new video, with brief explanations of the diets that are typically best for those with immune disorders like ME/CFS (paleo, keto, carnivore).

Unfortunately, the yeast overgrowth is still very persistent. I am still taking my maximum dose of prescription antifungals, a whole range of probiotics focused on my own gut testing results with the aim of controlling yeast, and herbals antifungals. And I still have to stick to a very strict diet. I was tired Sunday and Monday this week and realized it was again due to yeast overgrowth. I had "cheated" a bit: two cups of popcorn Saturday evening, a quarter-cup of blueberries Sunday. That's all it takes for the yeast to come back and thrive in me. It is barely kept under control with this diet ... but if I stick to it, it is. That's difficult for me, but I realize it is something I can control, and I'm grateful for that.

Since yeast overgrowth (aka candida) is extremely common in ME/CFS and long-COVID and often overlooked, I wrote a blog post about Treating Yeast Overgrowth/Candida that includes lots of different treatments to try (just updated this year).

That's how my year is going so far!

How are you doing this year?

Have you tried treating thyroid dysfunction or yeast overgrowth? 

Have any other treatments helped you?

Let me know in the comments below.

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

Chronic Illness Vlog: Bump in the Road But Still Doing Well!

Life has been hectic lately, but I did manage to record a vlog last week. My chronic illness vlogs are a little peek into my life with ME/CFS, an honest view of what my life with chronic illness is like on a typical week (though it hasn't been typical lately, with all the travel!). As you'll see in the vlog, I am still crash-free in 2024 (yay!), but I had a string of days last week when I was feeling run-down and had very low energy. I figured it out (yeast again - duh), and getting stricter on my diet helped me get back on track.

You can watch the video on YouTube (the link to YouTube also includes all of my notes below the video, with links to other information you might find helpful that I referenced) or I will include it here below:

 

 As always, I've also incorporated some nature videos into the vlog for your peace and enjoyment.

Our son (the one with ME/CFS for 20 years) and his girlfriend have been here all week and are currently packing their rental truck. They leave early tomorrow morning on a month-long road trip across the US! They've been planning this for years, and we're so excited for them. We'll be guinea pig sitting while they're gone, and then they both start new jobs when they return in June--exciting times!

How was YOUR week?

 

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog 4-1-24: Out in the World, Home Improvements & Easter

I recorded a chronic illness vlog last week, full of videos (and some photos) that show an honest view of my life with ME/CFS and Lyme. And these days, it's a pretty good life!

I am still doing really well and have been quite active, as you can see in the video. I've been able to see friends, go shopping (!), run errands, and even begin to work on our house a little (baby steps!). Small steps toward decluttering feel so good after feeling so helpless the past few years; it feels great to be productive again. Last week, I also went to the movies with my husband and enjoyed a weekend trip to visit family for Easter. This visit was a far cry from our last trip, for Thanksgiving in November, when I was so horribly sick that I needed a second nap between dinner and dessert.

As I've mentioned here before, my recent big improvements came from treating chronic yeast overgrowth (which makes me feel awful). I thought it was already well-controlled ... but I was wrong! It took all of the treatments in my Treating Yeast Overgrowth post, plus a major change to my diet at the beginning of the year. The other factor was effectively treating thyroid dysfunction (hypothyroidism, in my case). My doctor and I worked on that for over a year, but I couldn't see the full improvement with the yeast overgrowth making everything worse. 

That's the way it is with these complex immune disorders; sometimes you can't see the benefits of one treatment until you tackle another aspect of the disease. I have not experienced a single crash from over-exertion (or for any reason) yet in 2024, which feels like a miracle. I'm feeling the best I have in several years. Keep in mind that prior to this, I also treated many other aspects of the disease (see Effective Treatments, newly updated). It's like playing whack-a-mole!

You can watch last week's vlog on Youtube or right here, below:

How was YOUR week?

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

My 2023 In Review: Chronic Illness Rollercoaster!

Chronic Illness is often said to be a rollercoaster (in fact, Riding the Chronic Illness Rollercoaster is the name of a chapter in my book!), and that was definitely true for me last year, with plenty of ups and downs in my life with ME/CFS and Lyme. I'm a little late with my usual year-end wrap-up (and only just set my goals for the new year!), but that's another fact of life when you have chronic illness; we make accommodations. 

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).

 

2023 in Review: My Health - the Data

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

• 13% better than 2022, which was my worst year in 21 years of chronic illness.
• My best months were 2.2, and my worst was 3.4.
  
• Things have been a lot worse for me since 2020 (see my Relapses & Recoveries post), so this was a move in the right direction!
  

Average % crashed = 15% (meaning I was couchbound/bedridden 15% of the time)

• Crashed = a 4 or 5 on my scale, unable to function, stuck in bed or lying on the couch.
  
• 12% better than 2022, which was a low point.
• The average doesn't tell the whole story because there were some highs and lows.
  
• My best months were April and June, with only 3% crashed, but in my worst month, November, I was crashed and nonfunctional 50% of the time.
  

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

• 8% better than 2022.
  
• My best months were April and October, with 4.3 average exertion, and my worst month was November, with just 2.8--I spent much of that month lying on the couch.
  
• I think my exertion level looks better than I actually felt; I know that I was pushing myself too hard and not resting enough during some of those early crash months. I finally gave in and rested in November.

  

What Made Things Worse Last Year:

• Not listening to my body and resting enough when I crashed.
• Yeast Overgrowth - this was definitely my biggest issue in 2023:
• As with many people with ME/CFS, I suffer from chronic yeast overgrowth due to the specific kind of immune dysfunction in this disease.
• I made the mistake--over and over!--of assuming it was under control because of all the treatments I routinely take/do that normally work effectively. This kept me from recognizing (and treating) the underling causes of my repeated crashes.
• My diet. I was calling my diet Paleo, but honestly, I wasn't sticking it to it very strictly by last year. This was a huge contributing factor. If I had actually stuck to a strict Paleo diet, the yeast overgrowth probably wouldn't have gotten so much worse.
  
• A short round of steroids (prednisone for five days) in November. Since the issue was actually yeast overgrowth, suppressing my immune system was not a good idea!
  

 

What Helped Me Last Year:

I tried eight new treatments (or adjustments to old treatments) last year that helped me. Below are the changes that helped me the most (some things that I tried, I'm not sure yet if they are helping or not).

• Normalizing my thyroid function. I spent a full year working with my primary care doctor on this, getting thyroid labs every two months, adjusting my meds, waiting another two months, repeat. All that effort, patience, and persistence paid off, and I am starting 2024 with my thyroid working very well! Besides increased energy, less fatigue, and more stamina, I lost 20 pounds over the past year--back to pre-illness weight! It's been eye-opening to see what a difference this makes. I wrote all about it in Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID.
• Changing my diet. In the very last two weeks of the year, I drastically changed my diet, once my functional medicine specialist pointed out to me that I still had thrush in my mouth, even with all the anti-yeast treatments I was on. I took her advice to "starve the yeast" by switching to a no-carbs Carnivore Diet. It is what it sounds like: meat, fish, eggs, butter, and no carbs at all. It worked, and by the first days of January, I was feeling the best I have felt in many years! Here's my video about my first month on the Carnivore Diet. I am currently about 97-98% Carnivore; I occasionally have a few bites of non-yeast-encouraging veggies or avocado. I am still feeling great (for me!). I've been seeing friends, taking daily walks, and even helping a friend with her move. Today, I went shopping for clothes for the first time in ages (my clothes are all too big now), and it is just such a thrill to be back out in the world!

 

Other Highs and Lows of 2023 for Me:

Lows: Obviously, with all of 2023's health issues and months spent on the couch, many things just didn't get done last year:

• Not enough time with local friends.
• Very little writing outside of my two blogs and no magazine articles.
• No energy for our home--decluttering is getting urgent!
• Given my poor health many months, I was not able to walk as much as I like or keep up even my tiny on-the-floor strengthening routines. 

Highs: But as always, though my year seemed awful when I was stuck on the couch in November and December, when I look back, I see some wonderful highlights:

My husband and I enjoyed 3 relaxing week-long camping vacations: to Virginia state parks in April, to the Catskills in June, and to the Virginia mountains in October for stunning fall foliage! When we travel with our camper, it is very easy and low-key. (links are to my travel vlog videos, where you can see some of the beautiful natural surroundings we enjoyed).

We enjoyed three weekends with our adult sons and their girlfriends, one at home for Father's Day, one camping in Pennsylvania and one at a rental on a lake in New Jersey. We cherish that quiet, laid-back, fun time with them!

My childhood best friend, Michelle, came to visit me in July, and we enjoyed a wonderful weekend together, reminiscing and making new memories!

In September, I finally got to meet in person my friend from across the world! Annie and her husband were visiting from Australia, and they made time in their busy schedule to meet up with us. Annie and I met online over 10 years ago, in the group I started for Parents of Kids and Teens with ME/CFS and Related Illnesses. We both had sick kids, and we supported each other and bonded. Annie later helped me run the group, and we've stayed in touch even though our "kids" are now grown up (and both doing quite well). It was such a treat to meet in person!

I stuck with my new goal to spend time outside every day and so enjoyed that extra time in nature! Given the state of my health, often that time was spent lying in a reclining chair on our deck or very slowly walking around the little cul-de-sac in front of our house, but the new habit really enriched my life. If you'd like to do the same, Join Me to Notice and Enjoy Nature More in 2024! with my #nature365 project.

 

So, that was my 2023.

How was last year for you?

 

What small joys did you experience?

 

What treatments help you?

 

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

 

Video: My First Month on the Carnivore Diet

Lots of people have been asking me about the new carnivore diet I began on January 2 (with a gradual move toward it in the two weeks before that). This has helped me to finally get chronic yeast/candida overgrowth (often a part of ME/CFS) under control, which has resulted in huge improvements for me. My immune symptoms (flu-like aches and exhaustion) cleared up and my energy has been really good for most of the past month (with a few rundown days this past week but today was better).

As I explain in the video, I am not a medical professional and am not recommending other people do this. I'm just trying to share my experiences and what I've learned so far, so you and your doctor can make informed decisions, based on your own medical needs.

In this video, I explain what a carnivore diet is & why I'm trying it, why it's supposed to be helpful for those with immune disorders, what we eat, and my results so far (spoiler: great!), with explanation of alternatives like Paleo & Keto. You can watch the video on YouTube or here:

If you watch it here, I will include the list of notes & links (that I mention in the video) that are below the video on YouTube:

Chronic Illness Vlog 1-8-24: Much Better! The Diet That's Helping

A good place to start on improving diet and helping yeast overgrowth is a Paleo diet. This post explains what it is, the modified Paleo diet we were eating, and how it helped us (note that if I'd stuck to strict Paleo, without the modifications, I might not have gotten as bad as I did!).

 Beginner's Guide to Keto Diet

Effective Treatments for Yeast Overgrowth/Candida

Orthostatic Intolerance (OI) in ME/CFS, Long-COVID, Lyme, and other illnesses

OI video

Harvard Carnivore Diet Study

Article I mentioned on Anti-Candida Diet

Diagnosing and Treating Thyroid Dysfunction

Let me know if you have any questions.

Have you found any special diet that helps with your chronic illness?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: I'm Back, Baby!

After months of a very bad relapse of my ME/CFS, I had a wonderful week! I felt really good, had good energy, and was active and productive. In this video, you can see me out and about, coming back to life after months on the couch, and I explain how I figured out what was behind my bad crash (in short, still yeast overgrowth!), and the radical diet change I made that resulted in such a stunning turn-around.

You can watch the video on YouTube (there are additional notes below the video - click on "...more") or here:

You will see a very big change from my last chronic illness vlog, a few weeks ago, which was almost entirely from a horizontal position on my couch.

That's all I have time for today - a quick update. My husband and I are going out of town for a few days - just a quick trip to a town about an hour away. They have a wonderful independent bookstore that is hosting a book event for me and my book! I'll have a chance to tell my chronic illness story, read a bit of the book, meet people, and sign books. This has been scheduled for months, so I am very relieved to be feeling well enough to manage it!

 

How was YOUR week?

How are you doing?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

NEWLY UPDATED: Treating Yeast Overgrowth (Candida)

Yeast overgrowth (sometimes called candida) is a very common problem in people with ME/CFS, Lyme disease, and long-COVID, though many patients are unaware of it or the severe effects it has on their symptoms. The specific type of immune dysfunction in ME/CFS and long-COVID allows yeast or candida (a normal, natural fungus that occurs in the body) to over-populate and cause symptoms that can greatly worsen these conditions. In addition, bacterial infections are common in ME/CFS and long-COVID and often require antibiotics--as does Lyme disease--that can kill off the body's natural probiotics, allowing yeast/candida to grow out of control. Patients may be unaware that they have yeast overgrowth, but it can cause severe fatigue, brain fog and other cognitive dysfunction, flu-like aches, sore mouth/throat, and other symptoms.

In spite of many years of treating yeast overgrowth effectively, mine recently flared up badly this summer (probably due to sugar and refined grains sneaking back into my diet!). In spending the past few months working with a variety of doctors to get my yeast overgrowth back under control, I realized that I could update my blog post on Treating Yeast Overgrowth (Candida) with some new information and new treatments, based on what helped me and what I learned from doctors and research. So, check out that newly updated post, which explains how to tell if you have yeast overgrowth, with a long list of possible treatments to get it under control.

I also updated a couple of blog posts that linked from that one, with yummy recipes for candida-friendly treats:

• Paleo Chocolate Smoothie
• Sugar-Free Dark Chocolate Bark

In addition, last year I updated my post on Eating Paleo for Immune Disorders: Our Approach, which is also essential for controlling yeast overgrowth, with information on all the reasons why this type of diet is so effective for us, how to eat Paleo, and loads of recipes and ideas for easy, healthy meals and snacks.

So, all together, those updated blog posts should help with managing yeast overgrowth, which will help to improve all symptoms. I always forget just how important it is to keep yeast overgrowth under control and how much better I feel when it is controlled. This summer reminded me of that important lesson once again, so I wanted to share that information with you.

Do you struggle with chronic yeast overgrowth/candida?

What treatments for yeast overgrowth have most helped you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog 7-16-23: Yeast Overgrowth, Heat, and Best Friends!

My chronic illness vlogs provide an honest view of my life with ME/CFS and Lyme disease, with all its ups and downs!

Last week, I was struggling with yeast overgrowth/candida, a chronic issue for many of us with ME/CFS and long-COVID due to our specific kind of immune dysfunction. Mine flared up three weeks ago, for unknown reasons, in spite of the treatments for yeast overgrowth that I keep up (diet, probiotics, supplements, and medication) all the time. I was still struggling by the end of the week, but I'm happy to report that my doctor returned from vacation this week, prescribed a stronger antifungal medication for me, and I am starting to see some improvements.

On the plus side, last week, I very much enjoyed plenty of quiet solitude at home while my husband was away, and I had a wonderful weekend with my childhood best friend, who came to visit.

You can watch the vlog on YouTube (which also includes notes under the video and links to more information) or below:

I'm planning to write a longer post about my recent experiences with both thyroid issues and yeast overgrowth, when I have more energy. 

How are YOU this week?

Do you struggle with chronic yeast overgrowth/candida?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Ups & Downs, Thyroid & Yeast, Nature

My energy is very low today, due to a flare-up of chronic yeast overgrowth, but I at least wanted to share my latest Chronic Illness Vlog with you. This is an group of video clips from last week that show an honest view of my life, with all its ups and downs. And I had lots of ups and downs last week, some days feeling well enough (thanks to adjusting thyroid treatment again) to be active and some days feeling run-down or frustrated and overwhelmed ... or both!

Some of the information I mentioned in the video and included in the Notes below the video on YouTube include:

• Thyroid Tests to Request - scroll down to What Helped Me in this summary post of 2022.
• Effective treatments for yeast overgrowth/candida. I am currently doing all of this!
• Sign-up for my e-mail newsletter (goes out at the start of every month).

I'm planning to write a longer post about my recent experiences with both thyroid issues and yeast overgrowth, when I have more energy. 

How are YOU this week?

Have you had a full thyroid panel lately?

Do you struggle with chronic yeast overgrowth/candida?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Setting Goals When Chronically Ill: Improve Your Life in Tiny Steps

I was absent the past week due to a family funeral. Our brother-in-law died unexpectedly on January 1, so my husband and I quickly made plans to travel to Texas for the memorial service last weekend. I had no intention of flying anytime soon, but San Antonio is about a 5-day drive from here! Of course, I wore my mask the entire long day of airports and planes (and also most of the weekend). I also, for the first time ever, requested wheelchair assistance from the airline, and wow, what a difference! It helped so much, and all the people who helped me were so kind. If you've never requested it before and need to travel, definitely give it a try. It prevented bad over-exertion crashes so that I could enjoy time with our nephews and their families and recover quickly once back home.

While I catch up here and get back into a more normal routine, I wanted to share this video I posted just before our trip. It's called Setting Goals When Chronically Ill: Improve Your Life in Tiny Steps. It describes a process I have used for many years, with loads of simple tips and strategies to help you meet your goals, change habits, and improve your life--all in ways that are doable even in lives severely limited by chronic illness, even if your only goal is to be happier and find more joy in your life. You can watch the video on Youtube or I will include it below: 

I would love to hear how you are starting the new year, and any advice you have for setting goals and making improvements when you are chronically ill. You can leave comments below or connect with me on Twitter or on this blog's Facebook page.

Happy New Year!

Chronic Illness Vlog: Hectic Week!

I posted another Chronic Illness Vlog on my YouTube channel. This one was recorded last week, and it covers a much too busy week that ended with family staying with us, so you can see how exhausted I was by the end of it!

You can watch the video on YouTube and I will include the video below, too:

This video provides a glimpse into my daily life, the routines that help me, and the ups and downs of living with chronic illness.

Let me know what you think!

Do you like the vlog format?

How was YOUR week?