Coping with Chronic Illness Live Chat Replay & Personal Update

Coping with Chronic Illness Live Chat Replay 

Last week, I hosted a live chat on my YouTube channel about Coping with Chronic Illness. The chat replay is now available. We shared our tips on coping with chronic illness, including managing the heat, dealing with isolation and loneliness, and coping with restrictions. While this was a general discussion relevant to any kind of chronic medical conditions, a few people asked me specific questions about diagnosing and treating ME/CFS and Lyme disease, so I answered those, too. It was a great discussion!

You can watch it on YouTube or watch the video below: 

And apologies to all who follow my blog that I didn't post a notice before the live chat. I fully intended to, but between health ups and downs and computer problems, I didn't get a chance. Next time I schedule a live chat, I will post the date and time here ahead of time, so you can participate if you'd like to.

 

My Health Update

Looks like I last posted a month ago, in mid-June (again, apologies!), just after a mystery crash knocked me down during a week-long camping vacation. I mentioned in that post that I am trying two relatively new treatments for ME/CFS,. I am also continuing to adjust treatments for hypothyroidism:   

• Microdosing tirzepataide/Zepbound (a GLP-1 agonist) - I started that last fall, stopped in January, then restarted again in March when I relapsed again (during a time of year when I normally feel much better).  After about a month back on it, I recovered from the relapse. In this post, I wrote about why tirzepatide seems to help many with ME/CFS and similar illnesses, why I decided to try it, and my experiences in the first 3 months.
•  Sirolimus/Rapamycin - I started this in May, following the protocol used in an ME/CFS study, where many patients improved. I talk more about the study and my own informal survey of patients that led me to try it in this post. I slowly ramped up my dose, from 1 mg once a week to 6 mg once a week. In late June and early July (when I was up to the full dose), I was still experiencing a lot of mystery crash days (I did not have a single crash day last year, from March to August), so last week, I reduced the dose back down to 3 mg (I seemed to feel better during that week when I looked back). 
• Treating Hypothyroidism - I wrote all about this topic a few years ago, in a post called Diagnosing and Treating Thyroid Dysfunction in ME/CFS and long-COVID. My thyroid function was much better for a while (probably part of why I did so well last spring and summer), but I could tell my thyroid function was low again, based on weight gain and low energy. I made several changes recently: increased my dose of Armour Thyroid, slightly increased my dose of iodine (after decreasing it sharply this winter based on lab results), and changed the timing of my second daily dose of thyroid meds after finding out that magnesium interferes with their absorption.
• Other Supplement Changes - Fed up with so many random mystery crash days, while I was refilling all my meds boxes last week, I also changed any supplements I had changed since January, back to where they were before (when I was feeling better and was more stable) - quit anything new I had started, adjusted dosing back to where it was in January, etc. I stopped niacinamide and biotin, increased my dose of fish oil back to 2/day, and increased Iodoral (iodine supplement) back to 12.5 mg.

I don't know which of those changes helped (I'm usually more analytical and don't change so much at once, but I was frustrated!), but I've been feeling much better the past week and a half--no crash days and feeling more like I usually do in summer, with plenty of energy. I mean, I still need 9 hours of sleep a night and a nap every afternoon, but in between that time in bed, my energy is good!

So, that's what's been going on! I've been recording a vlog ever since I started the sirolimus so I could record its effects, and I hope to post that next week. I'm going to give this new treatments a few more weeks, and then I will write up a summary here on the blog and probably post a summary video, too.

In the meantime, I included a list of articles and videos about rapamycin/sirolimus at the bottom of that past post. If you're interested in this new treatment, I suggest you take a look at those. 

If you're new to my blog, ALL the treatments that have helped my son and I are listed in the Treatments tab at the top of the page.  

The real test for me--for both tirzepatide and sirolimus--will be the fall, when I usually go into a months-long relapse that lasts through the winter. And the stakes are high this year--my son is getting married at the end of September!

For now, though, I'm feeling better & trying to get caught up on everything after too many days on the couch! I'm even going to take a chance and make some vacation plans.

 

How have you been feeling lately?

Have you tried any of the treatments mentioned here - or anything else that has helped? 

Please share in the comments below.

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

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

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

In the video, I answer these questions:

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

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

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

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

 

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

 

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

  

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

 

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

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.

My Relapse Is Finally Ending!

I got out on a local walking trail today!

Sorry I've been so absent from the blog; I was pretty wiped out after the holidays. But I have good news! After three months of being badly relapsed with my chronic illness (ME/CFS) and stuck on the couch, I am starting to come back to life. The last two weeks, I had some better days but was very up and down: good day, bad day, good day, bad day, etc. This week, I have finally turned the corner. Today is my fourth good day in a row, so I don't think this is a fluke. I seem to be finally coming back to life.

I left the house three times this week, after months of being stuck on the couch. One of those was a trip to the orthodontist to get Invisiline (at age 59!), but even that was a big thrill. I ran a few small errands in our little town, and it felt so good just to be out in the world again, in my little red car, singing along to the radio, and seeing people besides my husband! And today, I got a long overdue haircut and ran into an old friend I hadn't seen in over 10 years!

For the last two days, after several days with no flu-like aches, I cautiously began walking again: still  tiny walks of about 15 minutes, but I left our little cul-de-sac! Such a thrill 😀 And today, the temperature went above freezing for the first time in over a week, so my timing was great--that sunshine felt so good.

This is the song that's been going through my head today (it's a weird video & some weird lyrics, so I'm not sure what the artist intended, but the chorus has been going through my head and making me smile):

What caused the relapse and why did it end? I have no idea! I wish I had some answers, but this disease defies logic (which makes me crazy--I like logic). The flu-like aches (a sign of immune activation) began on a random day in mid-October. My best guess is that I was possibly exposed to someone's random cold, and it triggered my immune system into overdrive for three months. I wear a mask in public, but sometimes my son or close friends come to visit (I realize I should be wearing a mask then, too) or (rarely) we eat in a restaurant where I have to remove my mask. 

Or perhaps it was simply an increase in allergies triggering my immune system to rev up. My main allergies are to dust and mold, and the timing sort of coincides with spending more time indoors (and molds increase in fall with leaves on the ground), though we had a very warm, dry fall this year. Who knows? I wish I knew what the trigger was so I could prevent it next year because I am really sick of being at my worst during the holiday season.

For a while, I thought it was the same thing that caused a bad relapse at the end of last year: yeast overgrowth, which is chronic for me and many people with ME/CFS or long-COVID, due to the specific kind of immune dysfunction we have. But I got extra-strict with my diet (still doing a keto diet) and switched to a stronger prescription antifungal than I normally take for a month. My dentist even checked me out and said there was absolutely no sign of thrush in my mouth, so I don't think that was the cause this time.

Perhaps my treatments played some role in my improvement. I took two 5-day rounds of steroids in December, in a desperate attempt to calm down my immune system so I would feel better by Christmas. I actually felt awful Christmas Eve and Christmas Day, but I was also doing way too much with lots of people here. But maybe the steroids did eventually help calm down my immune system. I do think the aches were less severe afterwards.

I also played around with my immune treatments, wondering if instead of their typical moderating effect, they might be further over-stimulating my immune system. I went off low-dose naltrexone for the first time in about 16 years. I tried restarting it a couple of times, then gave up and just stayed off it (for now). [Though note that it helped me tremendously for those 16 years, so it is worth trying. Details at the link.] I also stopped my daily glutathione nasal spray for a week or two, but I have restarted it, which coincided with feeling better. It's all such a guessing game because SO many factors can affect how we feel (including random things like the weather).

I'm due for another increase in my thyroid medications (for hypothyroidism) after labwork showed my numbers still well below normal in November, but other than that, I plan to stay the course and not change anything else for now. Don't want to mess with success!

We are starting to plan some big road trips with our camper for 2025, but you know how it is with this crazy disease! Last year, I got COVID in July and had to cancel five campground reservations for a two-week trip we planned. So, we will make reservations and hope for the best.

Now that I'm feeling better, I hope to do a 2024 wrap-up, both here and on YouTube, like I usually do at the start of a new year.

How are you so far in 2025?

What are your hopes and plans for the new year (relative to health or anything else)?

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.

Roadmap to Effective Treatments for ME/CFS and Long-COVID

The problem with a blog is that older posts kind of get buried, and my blog is now over 18 years old! So, I wanted to write a new post that directs you to all of my main treatment posts, since that is the topic that people with ME/CFS and long-COVID are often most interested in. For a more detailed explanation of each of the topics below, check out the Effective Treatments tab at the top of the page. That is also a guideline of all the treatments we have found effective, but I thought it would be helpful to write a current post to bring it to more people's attention.

(NOTE: Everything mentioned in this post is based on research and the practices of the top doctors treating ME/CFS and Long-COVID patients, as well as our own experiences.  You can direct your doctors to the U.S. ME/CFS Clinician Coalition for extensive resources on how to diagnose and treat.)

There is a misconception that there are no effective treatments for ME/CFS, but that is not true--it's just difficult to find a doctor who is knowledgeable about all of them. As with most aspects of this complex immune disorder, patients (or their caregivers) often have to be their own advocates and suggest treatments to their doctors. This post on Finding a Doctor for ME/CFS includes lists of ME/CFS experts all over the world, second-tier doctors who know how to treat some aspects of ME/CFS, and tips on finding a local primary care doctor to help you.

Below, I will just provide a brief outline on the aspects of the disease where treatments can help (based on our experiences) with links to the blog posts with detailed information, including how that aspect affects the disease, why treating it can help, and options for treatment. Each of those posts also includes links to research and more information. Check out the Effective Treatments tab at the top of the page for a more detailed outline.

Here are the treatments that have helped my sons and I to greatly improve our ability to function, our stamina, our exertion tolerance, and ultimately, our quality of life. We now live active, semi-normal lives. My son is now even working full-time!

These are not necessarily in order (though going down the list works). ME/CFS specialists often focus on treating those symptoms or aspects of the illness which are causing the most problems first. Remember: everyone is different!

Roadmap to Effective Treatments:

Correct Sleep Dysfunction. Fixing sleep helps everything! These treatments help to correct the problem at its root cause, not just knock you out with sedatives. Most of the treatments are cheap and readily available and any doctor should be familiar with them.

Treat Orthostatic Intolerance (OI). OI is an integral part of ME/CFS and long-COVID and treating it can often bring dramatic improvements. There are a wide variety of treatments available, many of them familiar to any primary care doctor. This post provides an overview of diagnosing & treating OI, with lots of links to more information.

Treat Methylation. Methylation is almost always dysfunctional in people with ME/CFS and long-COVID and directly affects GI function, energy production, detoxing, and mitochondrial function. This blog post explains what methylation is, with information on how to treat it with simple supplements. If you are one of those who can't tolerate even small doses of medications or supplements, start here. Vitamin B12 is an important part of improving methylation; this post explains the types and formats that are most effective.

Treat Immune System Dysfunction. Since ME/CFS is, at its heart, an immune disorder (as more and more research has proven) and immune system dysfunction is behind many of our symptoms, it makes sense to try to normalize the immune system. Both immune suppressants and immune stimulants can make us worse, so we need immune modulators. Some to try, plus other treatments:

• Low-Dose Naltrexone (LDN)
• Inosine or Imunovir
• Increase Glutathione 
• Treat MCAS (Mast Cell Activation Syndrome) 

Diagnose and Treat Underlying Infections. For many people, this aspect of treatment might need to come first, not last, especially if you have tried some of the above treatments and nothing seems to help you. Because our immune systems are dysfunctional and various infections are usually the triggers that start ME/CFS, almost all of us have some infections present that prevent us from improving.

• Reactivated Viruses. Our immune dysfunction allows old viruses to reactivate, especially herpes-family viruses. In these cases, treating with anti-virals often helps. If you know what infection triggered your ME/CFS to start, like mono/glandular fever, then treating that is often very effective. Dr. Martin Lerner, now deceased, led the way on research into Treating ME/CFS with Anti-Virals.
• COVID. If you have long-COVID or COVID worsened your ME/CFS, then treatment with Paxlovid could help, according to anecdotal reports. Studies are on-going.
• Lyme Disease and Other Tick Infections. Tick infections often go hand-in-hand with ME/CFS (and, indeed, Lyme disease is one of the dozen or so infections identified as a trigger for ME/CFS). This post explains why everyone with ME/CFS or FM should be evaluated for tick infections and includes a link for finding a Lyme expert near you. This is especially important for anyone with join pain and/or nervous system symptoms. The urgency is that tick infections can cause permanent neurological damage if left untreated. If you've had a negative test for Lyme, that doesn't really mean anything--the post explains why.
• Yeast Overgrowth. This is incredibly common in ME/CFS and long-COVID due to our specific kind of immune dysfunction. While not technically an infection, the immune system reacts as if it was. Wide range of treatments (newly updated in 2024) at the link.
• Infection-Triggered Crashes/Relapses. Exposure to even a simple cold can often trigger a severe crash or relapse in ME/CFS or long-COVID, due to our immune dysfunction. This post covers ways to improve the immune system to prevent those crashes and ways to treat when they occur.
  

Diagnose and Treat Endocrine Dysfunction. ME/CFS causes severe endocrine dysfunction--that's the part of the body that controls hormones, and hormones control everything. Messed-up hormones are behind sleep dysfunction (which can be corrected) and are one factor behind Orthostatic Intolerance, too. Both sex hormones and cortisol are covered in that endocrine dysfunction post link.There a more detailed post on Diagnosing and Treating Thyroid Dysfunction, as it's a complicated topic.

Diagnose and Treat Gastrointestinal (Gut) Issues. 70-80% of immune cells in the body live in the GI tract, so it's critical to address GI issues. Plus many people with ME/CFS and long-COVID develop GI problems. This blog post outlines the testing, diagnosis, and treatment of my son's GI problems, which resulted in huge improvements in his overall condition, finally allowing him to work full-time! 

 

There's no miracle cure or single treatment for ME/CFS and long-COVID, but these are the treatments that have most helped us.

What treatments have most helped YOU?

Please leave a comment below.

You can also connect with me on Facebook and Twitter and now on Instagram, too!

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.

Recent Webinar: Comparing Immunological Signatures Between Long-COVID and ME/CFS

Earlier this week, I participated in a webinar hosted by the Solve ME organization (which, by the way, has loads of great resources for patients and for doctors, in addition to leading advocacy work and funding research). It was called Comparing Immunological Signatures Between Long-COVID and ME/CFS, which was of great interest to me since earlier research has indicated that immune dysfunction is at the heart of ME/CFS, and my own experiences have certainly borne that out.

You can check out the schedule of additional upcoming webinars here. On their YouTube page, there is a full playlist of all of their past webinars (see the playlist in the right sidebar). And on that page, you can watch the one I just watched, or I'll include it here:

It's an interesting talk, and they've already had some fascinating findings from the first phase of the study, looking at long-COVID patients. Much of it will be familiar to those with ME/CFS, as many of these are well-understood characteristics of our disease.

You'll hear toward the end the question that I asked, though unfortunately, the researcher didn't really understand what I was trying to get across (my fault - hard to explain through a typed comment). I do plan to follow-up with an e-mail to make sure they understand that earlier research showed a change in immunological signature between patients with ME/CFS less than three years and those sick more than three years, so this could confound their data in trying to compare long-COVID patients (by definition mostly less than three years) and pre-2020 ME/CFS patients.

They are still recruiting healthy controls and those with ME/CFS (pre-2020), so I'm sending my info to them to volunteer. Unfortunately, you have to be able to go in-person to the clinic in NYC (though if you live in the NYC area, within 50 miles of the clinic, they can provide a home visit instead).

Finally, a quick apology for not posting much here on the blog lately! I traveled a lot in April and have been pretty run-down the past two weeks. I still haven't had a full "can't get off the couch" crash since the start of the year 😀 but my energy was so low recently that I had trouble writing much. AND, we leave again tomorrow morning for my mom's for Mother's Day and her birthday. Next week, our son and his girlfriend will be staying with us and THEN, life should slow down for us for a while, and I can get back to more regular blogging.

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.

Treating Endocrine (Hormone) Dysfunction in ME/CFS and Long-COVID

I just updated my summary of ME/CFS Treatments (always available through the tab at the top of the page on my blog). It provides a good roadmap for patients and doctors to all of the many effective treatments that are available now for ME/CFS and long-COVID. Many of those treatments are inexpensive and readily available everywhere. I had to add a whole new section on treating endocrine dysfunction because it's something I hadn't covered completely on my blog in the past. I decided to reprint it here, as a new blog post, to be sure everyone sees it.

ME/CFS causes severe endocrine dysfunction--that's the part of the body that controls hormones, and hormones control everything. Messed-up hormones are behind sleep dysfunction (which can be corrected) and are one factor behind Orthostatic Intolerance, too. Since deep, good quality sleep is essential to the endocrine system, correcting sleep dysfunction should be your first step. As my doctor told me 21 years ago, getting good sleep will improve everything (she was right). 

(Note that an endocrine specialist is usually only focused on diagnosing and treating primary endocrine disease, like Graves' disease, Hashimoto's, and others. It may be helpful to see one to rule these kinds of things out, but for most patients with ME/CFS, your primary care doctor or GP can help you with the areas outlined below.)

Here are some other areas of endocrine dysfunction:

Sex Hormones:

Sex hormones can wreak havoc in ME/CFS, too. When I was younger, I got much, much worse whenever I had my period. My doctor switched me to 90-day low-dose birth control pills, which worked great! They keep my hormone levels steady for 3 months at a time. Then, every 12-14 weeks, I stopped taking them for 5 days, got a period, and then went back on them. So, instead of crashing from my period every 4 weeks (25% of my life!), it was just 5 days out of every 3 months or so or 4 times a year. Much better!

In 2022, my OB/GYN told me she was retiring. Since I was 57, she said I had to be fully in menopause by then (our plan was to keep me on the birth control pills until I was past menopause, to prevent worsening from menopause symptoms). She wanted to see me through the transition before she left (yes, she was wonderful). We both knew it would be rough--after decades of holding my hormone levels perfectly steady--but it was much worse than we'd expected! That sudden shift in hormones left me completely wiped out, all my ME/CFS symptoms worse, and mostly bedridden/couchbound. I waited six weeks for the artificial hormones to clear out of my system, got tested, and I was indeed fully past menopause. Then, she started me on Estradiol patches (estrogen replacement, also known as Hormone Replacement Therapy or HRT), along with progesterone pills. As my hormone levels evened out again, I returned to my previous (pretty good) level of functioning. My new OB/GYN has agreed this is a long-term treatment for me because of my ME/CFS (there are risks, though, so it should be discussed with your doctor. Mine ordered tests first).

Testosterone cream can also be helpful to some, especially men with low testosterone.

Thyroid:

For many, many years, I said that thyroid dysfunction was very common in ME/CFS but that I didn't have it. Boy, was I wrong! After that awful transition off birth control pills at the end of 2022, my thyroid was severely dysfunctional. Hormones are all connected (the endocrine system), so when one is off, it can throw the whole system off. This is another reason why it is so critical to correct sleep dysfunction. 

I was already on a low dose of one medication for hypothyroidism, but it clearly wasn't enough. I spent a full year, working with my primary care physician to normalize my thyroid function--getting lab tests (which ones is critical), adjusting medications, waiting two months to retest, etc. Finally, by the end of 2023, with medications and supplements, my thyroid was functioning well. I'm now feeling the best I have felt in years! 

And, by the way, I lost over 20 pounds just from normalizing my thyroid function (no change in diet at that time), and I am at a healthy weight I haven't seen in 20 years. That tells me that my thyroid was off for a long time. This post explains all about Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID, including which tests to ask for.

Low Cortisol:

Low cortisol all the time is a hallmark of ME/CFS. However, the top ME/CFS experts do NOT usually recommend taking hydrocortisone for low cortisol. The biggest problem is that when you add in artificial cortisone, your body stops producing it on its own. So, you take a patient who is already not making enough cortisol and give them something that makes the situation even worse over the long-term. It is likely to help in the short-term but should not be continued for more than a month or so. 

A better approach is one that has worked well for me. The endocrine system dysfunction that causes low cortisol is closely tied to all the other dysfunctional systems in ME/CFS; it's all interrelated, especially in the endocrine system. So, when you treat and correct other problems, the endocrine system just naturally self-corrects and normalizes. So, instead of treating low cortisol directly, treat immune dysfunction, correct sleep dysfunction (a huge factor in endocrine problems), treat OI, improve methylation, treat thyroid dysfunction, and treat underlying infections. When you do those things, the endocrine system just naturally begins to normalize. This has worked well for me, and when I had my 24-hour cortisol test, it was perfectly normal! It showed the expected higher cortisol in the morning, slowly decreasing during the day to a low point at night. 

 Do you have any experience in treating these types of endocrine dysfunction or any others?

Let us know what helped (or didn't).

Please leave a comment 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.

Diagnosing & Treating Thyroid Dysfunction in ME/CFS and Long-COVID

 

NOTE: I am not a doctor. This post is based on my own experiences and what I have learned from my doctors and research. Always talk to your own doctor about any new treatments.

Key Points:

• Thyroid function affects every part of the body.
• Thyroid is very often dysfunctional in ME/CFS, long-COVID, tick infections., and related illnesses.
• Testing just TSH is often not enough; a full thyroid panel is more helpful.
• Treating thyroid can take a lot of patience and persistence to find just the right combination and dosages. Adjust dose in small increments to find the most effective dose for you.
  
• After starting or changing thyroid treatment, wait 6-8 weeks to retest.
• Evaluate treatments based on test results but also on symptoms and how you feel.
  
• Effectively treating thyroid dysfunction should result in significant improvements in many ME/CFS and long-COVID symptoms.
  

ME/CFS and long-COVID are immune disorders that affect all parts of the body, with significant impacts on the endocrine system (this is also often true with Lyme disease and other tick infections). The endocrine system is made up of all the different hormones in the body and is responsible for regulating all bodily functions, including sleep, digestion, reproduction and sexual function, metabolism, and everything else. Hormones are the messengers of our body, released by various glands to tell our organs how to function.

What Does Thyroid Do?

The thyroid gland is one of these messenger centers, regulating metabolism (the rate at which your body uses energy), which is a key factor in ME/CFS, long-COVID, and tick infections. It also plays roles in controlling heart, muscle, and digestive functions, brain development, and bone maintenance. The thyroid gland, located at the base of the throat, releases thyroid hormones, including triiodothyronine (T3) and thyroxine (T4), which affect every cell and every organ in your body. Certain organs in your body transform T4 into T3 (the active thyroid hormone) so that it can be used by your cells. This article from the Cleveland Clinic explains thyroid function in greater detail.

T3 is named that because it contains 3 iodine molecules, while T4 contains 4 iodine molecules. Plenty of iodine must be present for your body to create enough T4 and convert it to T3. ME/CFS UK expert Dr. Sarah Myhill explains the critical role of iodine in this excellent, brief article, Iodine - What is the Correct Daily Dose? She's also written a book about treating thyroid dysfunction, The Underactive Thyroid - Do It Yourself Because Your Doctor Won't.

Clearly, the thyroid is critical to all functions in our bodies. Since endocrine dysfunction is an integral part of ME/CFS, long-COVID, and tick infections, thyroid dysfunction is very, very common in these diseases. Luckily, it is also very treatable, and treating thyroid dysfunction can help to improve just about everything.

I've recently come through a difficult period where my thyroid became extremely dysfunctional. At one point, I was bedridden for over a month. After a year of frequent thyroid testing and adjusting treatments, I am finally feeling quite good. My energy is good, my sleep is better, my symptoms are improved, and I am able to be more active without crashing. Oh, and I've lost 10 stubborn pounds over the past year (hypothyroidism aka low thyroid causes weight gain). I'll share some key details of my story, with respect to thyroid function (you can read my full 21-year illness history here) and then some lessons learned regarding testing and treating thyroid function.

My Thyroid Story

I am fortunate to have a primary care physician who understands ME/CFS and knows of the high potential for thyroid dysfunction in the disease. So, for the first 19 years of my ME/CFS and Lyme disease, she frequently checked my thyroid function with lab tests. Looking back, I see that some years she only tested TSH (thyroid stimulating hormone), which isn't enough to get a full picture of thyroid function (more on that below), but other years, she also tested T3 and T4, which were always in the normal range. In 2021, that changed. Here's a brief timeline:

March 2020 (no connection to COVID; the timing was coincidence) - I went into an unexplained relapse and began seeing my son's Lyme specialist (I hadn't seen one in a while and my Lyme was flared up). By May, I was improving. 

February 2021 - for the first time ever, lab testing showed low thyroid function (hypothyroidism) - T3 and T3 Uptake were slightly low; all other thyroid tests were normal. My Lyme specialist started me on a low dose (5 mcg) of liothyronine (artificial T3). Next lab tests were normal.

May/June 2021 - I got the first two COVID vaccines, and my ME/CFS worsened for the next 6 months.

October 2021 - slightly low T3, so my doctor increased liothyronine to 10 mcg.

January 2022 - I got COVID and my ME/CFS worsened for six months.

June 2022 - Thyroid labs mostly normal, except for slightly low T3 Uptake.

NOTE: See my Relapses and Recoveries post from June 2022 for details on all of the treatments that helped me to recover from the multiple relapses that began in March 2020, including those triggered by vaccines and COVID.

August 2022 - After decades on birth control pills to keep my hormone levels steady, I had to stop taking them (I was fully in menopause and my OB/GYN of 30 years was retiring). A severe relapse resulted, and I was mostly bedridden through all of September and part of October, until I started using estrogen patches and progesterone.

November 2022 - Since the whole endocrine system is connected, that sudden shift in estrogen and progesterone sent my thyroid hormones into chaos! Tests showed low T4, low T3 Uptake, and low Free Thyroxine (T4) Index (see Lessons Learned below for tips on testing).

January 2023 - I switched my thyroid care from my Lyme specialist to my primary care physician (PCP), and she started me on Armour thyroid, 30 mg, in addition to the liothyronine. Armour is a natural product, real desiccated thyroid gland from pigs, and thus, it works most effectively to help normalize all thyroid function. Many experts say it's the most effective way to treat hypothyroidism.

March 2023 - Lab tests still showed low T3 and T4, so my PCP increased my dose of Armour thyroid to 45 mg.

June 2023 - Lab tests showed normal T3 and TSH but still low T4, so my PCP increased my dose of Armour thyroid to 60 mg.

August 2023 - Lab tests showed T3 barely in the normal range and T4 still low, so my PCP increased my dose of Armour thyroid to 75 mg.

October 2023 - I tested differently this time, getting the blood drawn before I took my morning thyroid meds (see Lessons Learned below), and the results were similar to the August results: low T4 and T3 barely in the normal range. My PCP increased my dose of Armour thyroid to 90 mg.

NOTE: Throughout 2023, with each dose increase of Armour thyroid, I was feeling better and better--more energy, better sleep, more stamina, fewer crashes. The dosage adjustments my PCP has been making have been tiny changes each time, rechecking lab results every two months, as recommended. I am still on just an average dose of Armour thyroid (average is between 60-120 mg).

December 2023 - Tests still showed low T4 and very low-normal (barely in the normal range) T3 and TSH. Based on advice from my Lyme specialist and Dr. Myhill's article, I started a small dose (6.25 mg) of Iodoral brand iodine (the one recommended by both of those sources). After 2 weeks, I increased my dose to 12.5 mg (2 pills), then to 18.75 mg (using the 6.25 mg pills and the 12.5 mg Iodoral pills). As of end of January 2024, I am testing out a dose of 25 mg. With each increase of iodine (Iodoral), my energy and overall well-being improved.
 

Lessons Learned

Testing:

Many doctors only test for TSH, but TSH can be normal when T3 and T4 are abnormal. For maximum effectiveness, ask for a full thyroid panel, including:

• TSH
• Thyroxine (free T4)
• T3 Uptake
• Free Thyroxine Index
• Triiodothyronine (free T3)
• Reverse T3, serum

At a minimum, ask your doctor to request tests for free T3, free T4, and TSH. 

If you are taking any thyroid treatments, get blood drawn for testing first thing in the morning, before you take your thyroid medications. This will provide the most accurate picture of your thyroid function rather than just showing the immediate effect of the medications.

After starting or changing treatment for thyroid dysfunction, wait 6-8 weeks to retest. It can take that long for your body to fully adjust. It can take even longer for your body to fully absorb iodine supplements.

The goal is not only to get T3, T4, and TSH barely into the normal range, but to get to a point where your thyroid function is normalized, and you feel better, with T3 and T4 values in the middle of the normal range. In fact, the very helpful website Stop the Thyroid Madness, which is based on thousands' of patient experiences over the course of decades, says that optimal thyroid function will be when your free T3 is in the top part of the normal range and free T4 is in the middle of the normal range (remember that T4 converts to T3).

In addition to what the tests show, pay attention to how you feel and describe to your doctor any changes (positive or negative) after changes in treatment. As thyroid is normalized, you should begin to feel better.

Treatment:

Everyone is different. Finding exactly the right combination of treatments and dosage for you can take some trial and error (and patience and persistence!). 

Experts generally recommend Armour thyroid or other natural desiccated thyroid as most effective in normalizing thyroid function, either with or without a T3 treatment (like liothyronine). Some people do well on just a T3 treatment (as I was for the first 18 months), and some on a combination of T3 and T4 treatments or just natural desiccated thyroid.

The right treatment for you will depend in part on your lab results (for instance, in the first 18 months of my thyroid treatment, my T3 was a bit low and the other numbers were normal) and your own individual response to treatment. That's why some trial and error might be necessary.

I felt much better after starting Armour thyroid, and with each increase in dose, my condition further improved. 

Thyroid medication should be taken on an empty stomach and away from antacids, calcium, iron supplements, and cholesterol medications. Taking it upon waking and waiting at least an hour before you eat works well for many patients.

After reading that splitting the dose can improve effectiveness and keep thyroid levels more stable throughout the day, I began splitting my daily dose in two, taking half when I first wake up and half after my nap, which is midway between lunch and dinner. (Note that I am talking about taking some pills in the morning and some in the afternoon, not cutting them in half; Armour thyroid can not be cut in half as it crumbles.)

There are several minerals that can be helpful to your thyroid--most of these are recommended for patients with ME/CFS or long-COVID or tick infections anyway (always start with a low dose, as listed, and check with your doctor):

• Selenium 200 mcg - also supports healthy immune function.
  
• Zinc - start low at 15-20 mg (increase if testing shows you're low); also supports healthy immune function.
• Vitamin D3 (necessary for good immune function & often low in ME/CFS) - I take 5000 IU - you can test to see where your levels are to start.
• Magnesium (look for glycinate, malate, or l-threonate; avoid oxide or citrate which are not well-absorbed and can cause diarrhea) - also helps with pain, sleep, energy, cognition, nervous system - I take Mg malate (1600 mg) and Mg-l-threonate (1200 mg), which is the only form of magnesium that can cross into the brain and is thus best for cognitive function.
  
• Iodine - Iodoral brand is recommended by experts as pure and effective. Start at a low dose, like 6.25 or 12.5 mg or equivalent liquid and increase gradually if it is helping. Be sure to take iodine supplements away from vitamin C.
  

(NOTE: Check labels of supplements and medications if you are dairy intolerant; many use lactose as a filler. Pills that contain lactose are usually white and solid; gel caps don't contain lactose. Check labels or drug information online, looking for "inactive ingredients.")

Some experts say that low-dose naltrexone (LDN) can also help. This is a treatment that helps to normalize your immune system, so it is helpful for those with ME/CFS, long-COVID, and tick infections anyway. My son and I have taken it for about 15 years. Maybe that's why I didn't have any thyroid issues for so long!

If your doctor isn't willing to work with you on this--trying a treatment, waiting 6-8 weeks to get retested, listening to what you say about symptoms, adjusting treatment, repeat--then you should look for a different doctor (tips on finding a doctor). Treating thyroid dysfunction is often done by primary care physicians, family doctors, or general practitioners (GPs); however if your case seems particularly complex, your doctor may refer you to an endocrinologist. But, in most cases, a specialist isn't necessary.

Resources:

I've found a couple of resources that have been very helpful in understanding how to diagnose and treat thyroid dysfunction:

• Stop the Thyroid Madness - an excellent website packed full of information, based on decades of collected patient experience. If reading is difficult for you (congrats on getting this far in my post!), there are some audio options on the home page. Be sure to check out the article on achieving optimal thyroid function (can also print to share with your doctor).
  
• Hypothyroidism in Lyme Disease from the Treat Lyme website by Marty Ross, MD - a well-respected website for those with tick infections, and the thyroid article is applicable for those with ME/CFS and long-COVID, too. Also good for sharing with your doctor.
• Iodine - What is the Correct Daily Dose? by Dr. Myhill (who is an ME/CFS expert in the UK)
   

So, that's my story and what I've learned. 

What have been YOUR experiences with diagnosing and treating thyroid dysfunction?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

 

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