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.

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.

Chronic Illness Vlog: Highs and Lows

I posted a chronic illness vlog from last week, showing an honest view of my life with chronic illness. And, wow, last week was one of extremes! I went from crying on the couch, wracked with flu-like aches, to the euphoric victory of attending my 40th (!) high school reunion and the challenges of traveling to spend time with family on a long holiday weekend.

You can watch the video on Youtube or watch here:

Yes, it was one of those weeks that felt like a rollercoaster, one that jerked me from very high highs to extremely low lows, often with no transition in between. As you can see, I was feeling optimistic when I recorded the last segment on Monday this week, but--alas--that was short-lived. By Wednesday, I was back to crying on the couch, with horrible aches, hitting bottom once again. After my husband left to go to the store, I opened the refrigerator to get some water, and the bottom rack in the door pulled apart, spilling all the contents onto the floor. That did me in. I collapsed in a heap in front of the open fridge and sobbed my eyes out. It was just one of those "last straws," know what I mean? I eventually pulled myself together, put everything back in the fridge, and huddled down under the blankets on the couch to watch two old episodes of Grey's Anatomy (my happy place). My wonderful husband said, "you're not even attempting dinner tonight," and took care of it entirely. 

Today, I am feeling better emotionally, though still achy. I scheduled a phone appointment with my ME/CFS specialist for next week, so I'm hoping she has some ideas to calm down my activated immune system. In the meantime, I am resigned to staying horizontal as much as possible and listening to my body.

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: Crash! A Mostly Horizontal Week

My latest chronic illness vlog is now available. I record these vlogs over the course of a full week, to show an honest view of my life with chronic illnesses, including ME/CFS and Lyme disease. Last week (and continuing this week!), I've been struggling with a "mystery crash," a sudden worsening of my symptoms, especially flu-like aches. The aches are an immune sign that tells me my immune system is over-reacting to ... something. You can hear in the vlog as I consider various possibilities throughout the week. My best guess now is that perhaps yeast overgrowth/candida has flared up again, as it did this summer. 

You can watch the video on YouTube or here:

As an update, I did get the stronger antifungals from my doctor and started them yesterday, but I am still achy and horizontal. Fingers crossed I feel better for our Thanksgiving trip next week to visit family. 

Here are some of the topics and treatments I mentioned or referred to in the video (all of these links are also below the video on YouTube).

• ME/CFS and Infectious Triggers -how to prevent and treat worsening during fall/winter.
• Treating Immune Dysfunction - includes information both on improving immune function and on treating underlying infections.
• Inosine - an inexpensive supplement that helps to normalize the immune system.
• Effective Treatments for Yeast Overgrowth/Candida - a common problem in ME/CFS and long-COVID that can make you feel awful.
  
• Diagnosing & Treating Orthostatic Intolerance (OI) blog post
• OI Video
• Chronic Illness Tracking: How I Feel, Symptoms, and Treatments video
  
• Vitamin B12 - what it does, why we need it, plus types and forms that work best
• Increasing Glutathione in ME/CFS and Long-COVID
• Treatments: Tried and True & New Hope - Dr. Davis' very interesting 10-minute video on "Can ME/CFS Be Cured?" plus another article on treatments.

 

How are YOU doing? How was your week?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Doing Better! ... And Sometimes Overdoing

It had been a while since I recorded a chronic illness vlog, so I put one together. These brief video clips from last week show an honest view of my life with chronic illness with its ups and downs. I've finally gotten my flare-up of yeast overgrowth/candida (chronic for many of us with ME/CFS, long-COVID, and Lyme) back under control. I've also been struggling for a year with treating hypothyroidism and am finally doing quite well! It was a mixed week, with some good, productive days and some run-down days. 

You can watch the video on YouTube (and see all the notes and links below it) or right here:

How are YOU doing?

Let me know in the comments 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.

Top Ten Posts from the Past Month

It's been another rollercoaster week of highs and lows - whew. After a month-long crash, I finally had a few good days earlier this week! Aches gone and able to be active just in time for our 2-day camping trip. You can see photo and video highlights on my Fall Getaway video. But, yesterday, I hit bottom again - horrible aches and sore throat, out of the blue. Even worse this morning--had to cancel going to see Hamilton with my two closest friends (who I haven't seen in months!). Pretty bummed out but settled into a rest day on the couch.

Since I don't have the energy for a new post today, I thought I'd share the 10 past blog posts that got the most visits this past month. It's a mixture of older, popular treatment posts plus inspirational posts plus recent updates (and one head-scratcher!). My top 10 blog posts this past month:

• Opinions and Editorials on the New Name & Criteria - this is a post from 2015 that is not very relevant anymore, so I have no idea why so many people looked at it this past month! If you're interested in some history, this post describes the "new" name, SEID, for ME/CFS, which never really caught on.
• News from Our House: Ups and Downs - this recent post from last month describes more of my recent rollercoaster struggles with recurring relapses, and what helped, as well as my son's wonderful improvements.
• Heart Rate and Post-Exertional Crashes in ME/CFS - this perennial favorite post, written in 2011 and just updated last year, is all about how heart rate can help you to predict (and prevent) post-exertional crashes, including how to calculate your limits and tips on choosing the right heart rate monitor.
• Treating Yeast Overgrowth/Candida - another popular older post that gets a lot of attention because yeast overgrowth is very common in ME/CFS and related illnesses due to our immune dysfunction--and it can make you feel awful, so treating it often improves many symptoms!
• The October Slide: ME/CFS and Infectious Triggers - popular at this time of year for obvious reasons, this post explains how the immune dysfunction of ME/CFS makes us susceptible to infectious triggers and how to prevent the downward slide that is common in fall and winter.
• Imunovir and Inosine for Treating ME/CFS - closely linked to that last post, inosine helps to normalize the immune system and has had a huge positive impact on my son and I--inexpensive and readily available, it's one of the top treatments that has helped us over the years.
• Increasing Glutathione in ME/CFS and Related Illnesses - again, closely linked to those last two posts, glutathione is essential for energy, detox, and ... healthy immune function. It's another simple, inexpensive treatment that has greatly improved our ability to function and reduced crashes & infections.
• Immune System Abnormalities in ME/CFS - another post that is part of this grouping on treating immune dysfunction, read this one first to better understand how the immune system in ME/CFS is dysfunctional.
• Mast Cell Activation Syndrome (MCAS) and ME/CFS - a different avenue of treatment to consider for ME/CFS and related illnesses, like Lyme disease, POTS, EDS, and fibro. MCAS is very common in these illnesses and is often easy to treat with inexpensive and readily available treatments.
• Weekly Inspiration: A Day in My Life - I made this video to show what a typical day is like in my life with ME/CFS and Lyme. I made it on a day when I was doing pretty well, which was most days until last year when this series of relapses began. I tried to be honest and open and share the realities of my life with chronic illness, including how treatments have helped me.
  

Those were the 10 blog posts most visited here in the past month, so I hope those keep you busy while I work on recovering! 

As always, please share your thoughts and your own experiences in the comments or any questions you might have.

New Diagnoses and New Treatments ME/CFS and Lyme

UPDATED: February 24, 2026 

Our son's struggles with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and tick infections (Lyme disease, bartonella, and babesia) got even more difficult this year, but he is beginning to see some improvements now, thanks to a variety of new treatments.

It's been a long, hot summer here with seemingly never-ending crises in our family, but the biggest one has been the decline of our son's health. When he moved back home in May (he's 25), he was in terrible shape - worse than he's been in years - with a bunch of new symptoms and 40 pounds lighter. We knew he hadn't been doing well lately, but we didn't realize just how bad things had gotten. I took him to an Integrative Health practice that we'd heard good things about from local friends in our support group. The practice includes several different medical professionals, though we have been focused on two of them: a Nurse Practitioner (NP) who specializes in tick-borne infections (but looks at the whole body) and a Functional Medicine Practitioner, also a nurse, who specializes in GI issues and genetics. Both have been helpful so far, and with a bunch of new treatments and changes, our son is slowly improving. We hope to get him back to the point where he can live independently and even support himself; it is a slow journey, but we are seeing progress. Here's a summary of what we have learned and what he is trying, in the hopes that some of this will help others as well.

Brief History and Background
It's always hard to give a "brief" history of our son's illnesses because it is complicated, but here goes. He became ill with ME/CFS in 2004, two years after I did (his younger brother had milder ME/CFS that began at the same time but he is now fully recovered). By spring 2006, he was doing quite well, thanks to treatment for Orthostatic Intolerance and was back to school full-time, back in band, and even playing soccer again.

In April 2007, he had sudden onset of joint pain, plus all of his usual ME/CFS symptoms worsened. He tested positive for Lyme disease (a lucky thing, since the tests only catch about 60% of cases) and was treated for it. The joint pain improved, but he never really got back to that good state he was in the previous year. Over the next three years, his condition gradually worsened. Finally, some strange symptoms - and the help of other parents online - clued us into the culprit, and we took him to an LLMD, a Lyme specialist. He confirmed that our son had two other tick infections, bartonella and babesia, in addition to Lyme. Since the three infections had been present for so many years (and gone mostly untreated), they were dug into his system pretty solidly and were difficult to treat. His immune problems due to ME/CFS made treatment even trickier.

Fast-forward ten years. With treatment for the three tick infections, plus more treatments for ME/CFS, he improved to the point where he was able to start college on time, live on campus, and graduate with an engineering degree. The past ten years had its share of ups and downs, but each time he got worse, we got to the bottom of the issues and treated him. This winter, though, he experienced the severe decline that I described. He was living away from home, there was a lot of stress in his personal life, and I had switched him from his usual tick infection treatment protocol (Byron White) to a different one (Zhang), a change I greatly regret now, as his tick infections had gotten worse, with worsening joint pain, fatigue, nausea, and headaches. In addition, he had developed completely new and alarming symptoms, including severe nausea, vomiting, a burning pain in his stomach, and severe anxiety.

The Tests
Our new medical practitioners ordered a slew of tests at his first visit, including:

• Genova Diagnostics GI Effects 3-day stool testing (our medical team now prefers the Gut Zoomer test from Vibrant Wellness for stool testing).
  
• Bartonella testing through Galaxy Diagnostics (well-known as the best bartonella testing lab, though still not 100% accurate)
• Lyme and babesia testing through Igenex (again, known as the best lab for Lyme testing, though no tests can catch 100% of the infections), plus another babesia test through Medical Diagnostic Labs
• Special stained blood film test through Fry Labs
• Tests through regular labs for a wide range of viruses and other infectious agents (including other tick infections)
• Tests through regular labs for Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), thyroid function, celiac disease (gluten intolerance), vitamin D, homocysteine, hemoglobin
• A more sensitive follow-up test for celiac when the first one showed some gluten sensitivity.
• We had already done 23andme genetic testing and sent the results through MTHFRsupport analysis - the genetic specialist looked at that, plus sent our data through another analysis tool.
• Saliva testing for cortisol and adrenal function (in progress).
• DNA Connections urine test Lyme panel (recommended but not yet done).

The Diagnoses
Based on all those tests, we went back for a follow-up visit with both practitioners and learned a lot (some we already knew but much of it was new, recent, and surprising):

• Severe overgrowth of bacteria in GI tract - the GI Effects test showed that he had very high levels of more than a dozen different nasty pathogens. The genetic specialist could point to specific pathogens and tell us what symptoms they caused, including the burning pain in his stomach, joint pain, and anxiety.
• Low hydrochloric acid in stomach, which contributes to some of his GI symptoms.
• Slightly low (low-normal) Total T3 (a measure of thyroid function); other thyroid measures normal.
• Celiac disease/gluten intolerance (something we never suspected).
• Low vitamin D3 - astounding since he takes 5000-10000 IU per day, though he wasn't taking all his meds the past few months since he often couldn't hold food or medicines down.
• Viruses: EBV, CMV, HHV-6 - all previously negative and now present.
• West Nile Virus - another big surprise.
• Babesia - negative (confirming our former LLMD's conclusion that he got rid of this one infection).
• Bartonella - 2 strains present.
• Lyme - equivocal results but likely, given his history and symptoms.
• Though babesia is gone, many other unidentified protozoa showed up in the blood smear.
• Lots of biofilms in his blood (sticky clusters of cells - Lyme bacteria is known to convert to biofilms, which is part of what makes it so hard to treat).
• Yeast overgrowth (which we already knew about and have been treating). 
• Genetic results showed he may be an over-methylator.

The Treatments

•  Nrf2 Activator (a Xymogen product) -  to activate the Nrf2 genetic pathway (per his genetic results - this is one of two genes present in those who don't respond fully to treatment for Lyme disease). This pathway regulates the production of important molecules that impart antioxidant activity, such as glutathione and superoxide dismutase (SOD). It also regulates the production of detoxification enzymes.
• Resumed A-Bart and started A-L Complex, herbal formulas for bartonella and Lyme, respectively, that are part of the Byron White protocol. He'd previously responded well to A-Bart. He is VERY sensitive to tiny doses of any tick infection treatments, so he is only taking 1-2 drops of each per week so far and having to build back up very slowly.
• Added CBD Oil, as needed for nausea, vomiting, stomach pain, joint pain, and anxiety - it's been very, very effective for him in controlling these symptoms in the short-term, while we work to eliminate their causes in the longer-term. We are using the Plus CBD Oil brand, which we buy at our local natural foods store and have found to be effective. Sometimes he buys edibles at a local dispensary.
• Cytomel 5 mcg (Rx) - a tiny dose for his slightly low thyroid T3.
• OrthoDigestzyme - 1 pill upon waking, gradually working up to 3 per day, before meals - to treat bacteria in GI tract, stomach pain, nausea, vomiting, and lack of appetite. Saw immediate improvement from the first week. 

• Changed Probiotics - stopped all probiotics he was taking, except saccharomyces boulardii (for yeast) and added UltraFlora Integrity - to treat bacteria in GI tract, stomach pain, nausea, and yeast overgrowth.
• ATP 360 - 1-3 per day for improved mitochondria function and energy production.
• P-5-P 25 mg - an active form of vitamin B6 that I was already taking.
• Mega Mycobalance - 5 capsules 1-3 times a day - for yeast overgrowth 
• Stopped methylcobalamin (B12) injections - continuing hydroxycobalamin (B12) injections (Rx) every other day only (due to genetic results).
• Reduced 5-MTHF (20 mg - we buy both 15 mg (at link) and 5 mg) from every day to 3x/week (due to genetic results).
• Moved Magnesium-l-threonate from afternoon to bedtime (3 pills) to help sleep. 
• Switched from acetyl-l-carnitine to Carnitine Synergy, a product that includes both acetyl-l-carnitine and carnitine.
• Eliminate gluten from diet.
• Rinse with Biocidin after brushing teeth - to help with certain oral bacteria found in his GI testing. 
• Eat 2 Tablespoons of navy beans twice a week to help with Collinsella bacteria.
• Added Boluoke (1 pill twice a day) to help break up biofilms.

  
Results So Far

• Stomach pain, nausea, loss of appetite are all greatly reduced and vomiting is now rare. He can eat again, hold down his food, and is beginning to gain back some weight.
• He's working as a waiter 2-4 nights a week.
• Anxiety is reduced, though still an issue.
• His average daily rating of how he feels (on a scale of 1 to 5, where 1 is good and 5 is incapacitated) has improved from a low of 3.3 to 2.8.
• His % of time crashed (at a 4 or 5) each month has improved from 42% to 19%.
• He's had the energy to enjoy time with friends or his girlfriend several times a week.

So, he is doing better, improving slowly but surely. He is continuing to work on diet and increasing the dose of the new supplements listed above. He has more testing to do (the saliva test and the follow-up GI testing through Ubiome), and follow-up appointments at the end of August. All these new supplements on top of the many pills we already take are a lot to keep track of, but we're helping him to juggle it all.

Now you see why I haven't had as much time for blogging or social media this summer! This crisis was frightening for all of us, and he really hit bottom by May, but we are hopeful that he will continue to improve. His goal is to make use of that engineering degree and get a full-time job so he can support himself.

I recognize that his particular set of problems is both unique and complex, but I thought that elements of what he's been dealing with would be helpful to others. In particular, I highly recommend the GI Effects testing kit from Genova Diagnostics - we learned so much surprising information from that.

UPDATE 4-11-23: Shortly after I wrote this, the Genova test became unavailable. Our medical team now uses the Gut Zoomer test from Vibrant Wellness, which my son recently took again to see how he's doing. I also used the Gut Zoomer test two years ago when I developed chronic diarrhea.

With the help of this test and treatments recommended from our functional medicine specialist, my GI function is now back to normal.

Another finding from this and later tests was that my son is severely gluten intolerant (perhaps even has celiac disease). Eliminating gluten from his diet led to further, giant improvements, not only in his GI symptoms but in energy and overall well-being. He is so much better now that he recently started his first-ever full-time job in his professional field (he is 28 and got ME/CFS at age 10). A large part of his improvement came from finding and treating GI problems, since a large part of the immune system is in the GI tract.

UPDATE 2-24-26: Our son continues to do very well, even though he still has ME/CFS, Lyme, and bartonella. He has lived independently since 2020 with his girlfriend and has supported himself for several years now. He works full-time at a job with requires both physical and mental exertion and even worked 6 days a week for a while. He still sometimes crashes (the 6-day work weeks are rarer now), if he overdoes or if he catches a virus, but he recovers quickly. He took no sick days at all in his first 18 months of working at this job! Some specific updates:

• He still takes A-Bart and A-L Complex from Byron White to treat bartonella and Lyme. He is still ultra-sensitive to treatment and Herxes if he increases it too fast. He's currently at about 10 drops of each, twice a day.
•  He has continued to stick to a fairly strict gluten-free diet and tries to avoid sugar (most of the time!). If he splurges on something with gluten in it, he gets GI symptoms afterward.
• He gradually stopped a lot of his supplements, but he still takes Boluoke and GastrAcid daily. 
• He is back to a healthy weight and has good energy. He enjoys doing things with his friends, family, and girlfriend.
• He still has some mild anxiety, but is doing well in a job where he's interacting with the public every day. 

 

Have you dealt with any similar GI or tick infection problems? 

Or found some effective solutions to some of these problems? 

Please share your experiences in the comments below.

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