Microdosing GLP-1 Medications (like Tirzepatide) for Immune Disorders, Including ME/CFS and Long-COVID

In this post, I will catch you up on my experiences the past three months with a new experimental treatment available for ME/CFS and Long-COVID, as well as other immune disorders like autoimmune diseases: microdosing (tiny doses) of the popular weight loss drugs, GLP-1 agonist medications, like tirzepatide (sold as Zepbound and Mounjaro). Through experience, doctors have noticed that when prescribing these medications for weight loss or diabetes for patients who also have autoimmune diseases or other immune disorders, the underlying immune diseases improve--sometimes dramatically--often even before there is any significant weight loss. I've been microdosing tirzepatide for about three months now, and it is definitely helping me. 

NOTE: My apologies for not posting on the blog for almost two months. Our lives were turned upside down in early December when my husband was diagnosed with cancer, GIST sarcoma. Since then, in addition to the usual stress and exertion of the holidays, we've also had multiple trips to Philadelphia, to the Fox Chase Cancer Center, my husband got COVID for the first time two days before Christmas, and he had surgery on January 7. Of course, he's the one who usually takes care of me, and the holidays are always tough for me, so while he had COVID and was recovering from surgery, I had to do everything he usually does around here, including grocery shopping, dishes, etc. Things are looking up now, but it's been a rough couple of months.

Watch the Videos: 

I have already discussed microdosing of GLP-1 medications on my YouTube channel in two videos, so you can get all the details there, if you prefer video. If you prefer to read about this topic, just scroll past the two videos.

Video 1, from November, is a Vlog of My First 5 Weeks Microdosing GLP-1 Medication for ME/CFS, which you can watch at the link, or I'll include it below:

Video 2, from last week, is an update after 14 weeks (3 months) of Microdosing GLP-1 Medication (Tirzepatide) for Immune Disorders, Like ME/CFS, Long-COVID, and Autoimmune Diseases, at the link or below:

And this Chronic Illness Vlog from 12-17-24 shows how I normally feel at this time of year.

 

Background (Mine and the Treatment's)

For the past 5 years, I have experienced a severe relapse of my ME/CFS every fall and winter, feeling like I have the flu every day for months. My primary symptoms during these relapses are severe flu-like aches and complete exhaustion, and my stamina during these periods drops considerably. I usually spend most of the late fall and winter lying on the couch because any exertion at all worsens my condition.

Last year, the seasonal relapse started earlier than ever, in mid-September (in 2024, it started in October and in 2023, in November), and that was after a very good spring and summer, filled with travel and outdoor activities. I still had ME/CFS--needed 10 hours of sleep a night, a nap every day, piles of medications and supplements, restricted diet, and heart rate monitoring during any activity--but I felt good most days, was able to be fairly active (for someone with ME/CFS), averaging 5000-6000 steps a day, and didn't have a single crash day from March through August! Then, September hit, and I was back on the couch.

I e-mailed my ME/CFS specialist to ask a question, and she suggested we do a phone consultation. On the phone, I told her my relapse had started even earlier. We have this conversation every year, but much to my surprise, this time, she said she had a new treatment to offer me: microdosing GLP-1 medications. She explained that doctors around the world had noticed that when they prescribed these medications for weight loss or diabetes, their patients with underlying immune disorders, like autoimmune diseases, saw considerable improvements. She also explained that the other ME/CFS doctors in the US ME/CFS Clinician Coalition (they all work cooperatively and share information) had been trying it with their ME/CFS and Long-COVID patients. Like anything, it doesn't work for everyone, but the results so far have been promising.

 

 Medication

She explained that for immune disorders, the doctors were focusing on tirzepatide (marketed as Zepbound for weight loss and Mounjaro for diabetes). Later, my primary care physician explained why. Most of these weight loss medications only affect one receptor on the body, glucagon-like peptide-1 (GLP-1) receptors. But tirzepatide acts on 2 different receptors, both GLP-1 and glucose-dependent insulinotropic polypeptide (GIP). Doctors have seen that this dual-action tends to be more effective when using the medications to treat immune disorders (and for weight loss and diabetes). My primary care doctor also told me that a new medication that targets three different receptors is in development now, so that could be even more effective for us.

Because this is an off-label use of tirzepatide (it is only FDA-approved to treat weight loss and type-2 diabetes), my specialist sent my prescription directly to the manufacturer, Eli Lilly, and they shipped it directly to me. Yes, this does mean it is not covered by insurance, but as I'll explain below, the cost isn't that bad when the doses are tiny.

And because I am microdosing, using tiny doses far below what is used for weight loss and diabetes, I do the injections myself. For its FDA-approved uses, they supply auto-injectors, where the syringes are pre-filled, but my doctor just requested the vials of medications so I can measure out the amount myself. I have been self-injecting vitamin B12 every other day for about 15 years, so this is no big deal for me. The needles are tiny, so you barely feel them.

 

Dosing and Effects

The solution ordered for me contains 2.5 mg/0.5 ml. My specialist suggested I start with just 0.1 ml, which equals a dose of 0.5 mg, injected three times a week, on Monday, Wednesday, and Friday (that's what she and the other ME/CFS doctors had been suggesting). That is about one-fifth of a regular dose. I started on October 22. I felt really good the day after my first dose, with great energy and no flu-like aches at all. However, for the next few weeks, the aches came and went, and my energy varied. I noticed that I generally felt good on the days in between injections and on weekends and had some mild flu-like aches start about an hour after each injection.

Six weeks in, I talked to my doctor again and explained the pattern I was seeing. She suggested either decreasing the dose or switching from three times a week to just two. She said I could play around with the dosing a bit to find what worked best for me. I reduced the dose by half, to just 0.05 ml (a dose of 0.25 mg). The flu-like aches went away after the second reduced dose, though my energy seemed lower.

At week eight, I decided to split the difference and try 0.075 ml (a dose of 0.375 mg). That seemed to be the sweet spot for me, and I have stayed at that dose ever since. I am now on week 15.

The first shipment of 4 vials cost me $300, and with the tiny doses, it lasted me three months! And since I'm buying it direct from the manufacturer, ordering online, I used a credit card that gives us 3% cash back on online purchases, so that gave me an extra little discount. 

I have had no side effects at all, likely due to the low dose, and I have not lost any weight. That's good because I lost about 25 pounds a few years ago when my doctor and I worked to treat thyroid dysfunction (very common in ME/CFS and long-COVID), and I am at my normal, healthy weight now.

 

How It Has Helped

Once I figured out the dosing, I have done quite well with tirzepatide. The flu-like aches that normally plague me at this time of year mostly went away, unless I overdo. My energy and stamina have been pretty good, though not as good as they normally are during the spring and summer. But compared to my usual severe relapse in fall/winter, I have been feeling much better than I normally do at this time of year. I'm usually stuck on the couch all season, unable to do much of anything. 

In addition, we have had very high levels of stress and higher-than-normal levels of exertion for me, with my husband's cancer diagnosis, his bout of COVID, and both the preparation and post-surgery periods. He normally does a lot around here, so I had to go to the grocery store, do more dishes, etc. While he was in the hospital in Philadelphia for his surgery, I was staying nearby at the Hope Lodge, spending very long days at the hospital and walking much more than I normally do. And I managed it all without crashing.

Just this past week, the aches have returned, along with an intermittent mild sore throat and less energy, plus increased mucus production. My best guess (it's always a guessing game with a crash!) is that I must have been exposed to someone's cold or something, even though I wear a mask when I'm around other people. Both of our sons have been around a lot, though, and we've shared meals with family members and friends (I haven't yet found a way to eat while wearing a mask!), so it's possible. It doesn't feel like I caught the virus, only that I was exposed and my immune system is over-reacting, as usual. I'm hoping the tirzepatide will help me get past this virally-triggered crash sooner than usual.

As an ex-engineer, I love data! I track how I feel each day, on a scale from 1 to 5, where 1 is great and 5 is non-functional. I calculate the average for each month, as well as the percent of days I was "crashed" (defined on my scale as 3.5 or higher). I made this video about how I track symptoms, etc. 

When I compare October, November, and December of this year, I can see the improvement in the numbers. And when I compare this year's fall months against the past two years, the improvement is pretty amazing! (remember that my 2025 relapse began earlier, in Sept, in 2025)

Average of How I Felt and % Days Crashed

2025                                2024                                2023

Avg     %                         Avg    %                           Avg        %

Oct    3.0        32%                  2.5        13%                    2.5            13%

Nov   2.4        3%                    3.3        40%                    3.4            50%

Dec    2.2        0%                   3.2        45%                    3.1            32%

(for comparison, my avg from March - August 2025 was 2.2 with 0 crash days) 

I think the change in the % crashed numbers are especially stunning. If it hadn't been for COVID and a cancer diagnosis, I might have even been able to enjoy Christmas this year!

 

OK, I think that's everything! Let me know if you have any questions.

Have YOU tried any GLP-1 medications (at any dose, for any reason)? 

What was the effect on your underlying chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Giving Tuesday 2025: Help ME/CFS and Long-COVID Patients

Today is Giving Tuesday, a day devoted to giving back, after the commercial excesses of Black Friday and Cyber Monday. Every little bit counts, even if it's only $2 or $5. If you, like me, spent way too much shopping online for the holidays yesterday or you just want to give year-round, you can even set up a recurring donation. That's what I did years ago with OMF (see below) so that $5 was automatically donated from me each month, and last year, I increased it to $10 a month. I don't have to think about it or do anything else, and my donation now adds up to $120 a year! It only takes a few minutes to either donate or set up recurring donations. And every little bit counts.

And there are some amazing deals in place right now that will double or even triple your donation, turning $10 into $20 or $30! All of the groups listed below that do ME/CFS research and/or support ME/CFS patients are now also helping those with long-COVID.

Where to Donate:

Here are some wonderful places to donate to support ME/CFS research and patient support & advocacy--all are doing great work and the first three are the top ME/CFS research organizations in the world, funding or conducting the bulk of the scientific research today:

• Open Medicine Foundation - #TripleGivingNovemberOMF - Thanks to generous gifts, every donation made in November (through December 3) is TRIPLED, up to $1,000,000! It's a great opportunity to make your money go farther! This organization does some outstanding, groundbreaking scientific research into causes, treatments, and cures for ME/CFS and long-COVID, with doctors, scientists, and researchers in Collaborative Centers across the globe. You can read about their End ME/CFS Project here.
  
• Solve ME/CFS Initiative - Donations made to Solve ME today will be doubled, thanks to donations from their Board of Directors! And today only, on Giving Tuesday, another generous donor has offered to also match donations up to $25,000, so donate today and your money will be tripled! This organization does a lot of work in both ME/CFS and long-COVID research and advocacy. You can read their newsletters here, including research updates and read more about their Solve Long-COVID Initiative here.
  
• Simmaron Research - Donate through their website and you can read all about their research projects here, including the first-ever biomarker-based treatment trial.
  
• #MEAction - This organization is focused on advocacy and outreach rather than on research, and they are doing some amazing work with patients, communities, and governments! For instance, gaining Congressional support in the U.S. is absolutely essential to increasing research funding. Read more about them here, ways that anyone can help and take action, and you can donate to the organization here. They also have information on Long-COVID and ME. 
• American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES) - they focus on meeting the needs of patients and caregivers through support, advocacy, and education. They have an informative newsletter, loads of useful information on their website, and advocacy programs. They also, uniquely, have a Financial Crisis Fund that I recently donated to, to help patients in dire need of food, housing, medical care, or other support. You can donate to AMMES here.
  
• ME Association - This UK organization supports patients and research in both ME/CFS and long-COVID. Here's more about the organization and what they do, plus their current research projects.They also have an online shop featuring all kinds of books, t-shirts, cards, and more, with proceeds supporting the organization. And you can donate here, and your donation will be doubled until December 9.
• Emerge - The primary ME/CFS association in Australia provides research and patient support and advocacy. They are now also helping to support the Australian Collaborative Research Center of Open Medicine Foundation. Donate here.

Host Your Own Fundraiser:

To have an even bigger impact on these organizations, you can host a Fundraiser on Facebook. I have hosted fundraisers on Facebook for my birthday every year, and it's very simple to set up. Just go to the Facebook Fundraisers page and click on "Select Nonprofit" (all of the ones listed above are available), then follow the steps. You set your own fundraising goals, and share your fundraiser with Facebook friends.

Donate While Shopping:
And remember - especially this time of year - to make your shopping work for you with automatic donations to your favorite ME/CFS charity every time you shop! 

Goodshop or iGive have almost every online store covered between them - I always stop at iGive first before doing any online shopping. You can also earn by using the site to search. And use that iGive link I posted in the previous line, and we'll earn an extra $5 for Solve ME!

To show you how well this works, my iGive page currently shows that I have selected Solve ME as my cause, that I have personally earned and donated $318.88 to them, and that they have earned a total of $6,616.18 from all supporters! Isn't that amazing? Over $6600 just from clicking a button before we shop online. Amazon is not a part of either program and got rid of its own charitable donation program last year, but you can find most other online stores on at least one of these.

With so many painless ways to give, we can all help to move ME/CFS research forward and support patients! 

 

Let me know if you know of other organizations or other ways to give that I missed here.

You can leave a comment below.

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

Gorgeous Fall Foliage & Nature Video

As I mentioned in my last post, I am trying a new experimental treatment for ME/CFS, long-COVID, and autoimmune diseases. I'm working on editing a month-long vlog about how it affects me. The short answer is that it is helping!! Hurray! I'm doing much better than I normally am in November, when I'm usually in the midst of a months-long seasonal relapse and living life horizontally. I've been busy, active, and productive with very good energy and only mild immune symptoms (flu-like aches). I even managed TWO social events with friends last week! I hope to have that video finished and posted on my YouTube channel before next week.

In the meantime, I wanted to share another video, from our last camping trip of the season. In my book, there is a chapter about The Restorative Power of Nature (you can read an earlier version of that chapter here on the blog). The science is really amazing, showing that spending time in nature helps to improve both mental and physical health (including immune function!). Those studies also show that when you can't get outside, even just looking at pictures of nature has measurable health benefits.

So, though I couldn't bring you all along on our trip, I can share this 15-minute video that features vibrant fall foliage, peaceful sunsets over the water, birds, and other beautiful, tranquil nature scenes. You can watch it on YouTube or I'll include it below:

 Enjoy watching, and I'll be back soon with more details on how the new treatment is helping me.

How do you enjoy nature? 

 

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

 

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

My Annual Fall/Winter Relapse Started Early, But I'm Trying a Promising New Treatment

My Seasonal Worsening in Fall & Winter Came Early 

I haven't posted here in a while because the seasonal relapse or worsening of my ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) that hits me every fall/winter came early this year, knocking me down in mid-September. This happens to me every fall: sudden onset of immune symptoms, like flu-like aches, severe fatigue, and sore throat, indicating that my immune system is stuck in an overactive state. This seasonal downturn is very common in those with ME/CFS and long-COVID, and I wrote a blog post, The October Slide: ME/CFS and Infectious Triggers, about it. That post describes this annual phenomenon for many of us, along with one possible explanation: that more exposure to infections at this time of year can trigger this kind of immune activation. It also summarizes many treatments that have worked well for us in the past, including treatments to improve immune function and treatments to help if you are exposed to or actually catch an infection.

However, for the past five years, none of that has been enough to prevent this seasonal worsening in me that lasts longer each year. In 2023, this relapse began in November, last year in mid-October, and this year, in mid-September. And once it starts, nothing seems to help, and it usually lasts until January. So, every year recently, I am couchbound through fall (my favorite season!) and through the holiday season, which makes our travels and family events pure torture for me. Last Thanksgiving, I needed 2 naps just to manage to get through the afternoon and evening, and I felt awful the whole time, wracked with severe flu-like aches. As I said to my husband recently, if anyone "normal" and healthy woke up feeling this way, they wouldn't get out of bed!

So, it's become very frustrating and depressing, especially when the flu-like feelings began so early this year, just before our 10-day trip to New York State to visit family and enjoy some fall camping. Every year at this time, I try a short round (5-7 days) or two of steroids (prednisone) to try to calm down the immune activation but it often doesn't help much. I would probably need a much longer round of steroids to really settle my immune system down, but they have side effects, including worsening my chronic yeast overgrowth (another common feature of ME/CFS and long-COVID, thanks to our immune dysfunction) ... and yeast overgrowth also causes flu-like aches! So, I tried 7 days of steroids a couple of weeks ago, and I felt better the first couple of days but then got much worse again, as I reduced the dose.

I spent much of vacation lying in my lounge chair, but the view was great!

 

A New Treatment to Try ... and New Hope! 

I e-mailed my ME/CFS specialist a couple of questions and let her know I was relapsed again, with immune activation, and she suggested we talk on the phone. Much to my surprise--since we have this same conversation every year at this time!-- she offered me an entirely new treatment that could potentially get right to the heart of the disease--the immune dysfunction--that I hadn't even heard of yet.

She is part of the ME/CFS Clinician Coalition, a cooperative group of all the top ME/CFS doctors in the U.S. They work closely together, watching (and participating in) the latest research, trying things with their patients, and sharing information. She said there was some evidence that the new GLP-1 agonist weight loss drugs helped to normalize immune function in patients with autoimmune disease (while ME/CFS is not technically classified as an autoimmune disease, it is a disease with immune dysfunction at its heart). ME/CFS doctors in the coalition have been trying microdosing (using tiny doses) of these medications and are seeing some remarkable results ... though, of course, it doesn't work for everyone. Here's an excellent article summarizing the experience with ME/CFS, long-COVID & fibro patients so far, and here is a video of a recent discussion by some of these doctors about this new treatment. 

So, I'm trying it! I'm very excited to have a new treatment possibility to try, especially something that gets right to the heart of ME/CFS. If I could normalize immune function, then everything else would improve. 

It's expensive, though. Even with the microdosing, these are new medications, being used off-label (other than their approved purpose), so insurance won't cover it. The first delivery cost about $350, and that should last me about 6 weeks. However, if it really works, then I could potentially stop taking some of the expensive supplements I take and possibly reduce my dose of certain medications (like thyroid medications and anti-fungals). I talked it over with my husband, and we thought it was worth a try to maybe prevent spending half of every year lying on my couch, unable to do anything.

The one she prescribed for me is tirzepatide, sold under the brand names Zepbound (for weight loss) and Mounjaro (for diabetes), though they're the exact same drug. This is the one that ME doctors have been focusing on, because it has additional actions, besides targeting GLP-1. She sent my prescription in, and I purchased it directly from the pharmaceutical company (Eli Lilly). It comes in small vials, and I do the injections myself (I am used to that with my B12 injections). I think a normal dose for weight loss is 2.5-5 mg, and my doses are 0.5 mg, three times a week. At these lower doses, doctors have found that the side effects are lessened (and I'm actually hoping not to lose any weight, as I lost over 20 pounds a couple of years ago when I got effective treatment for my thyroid dysfunction). 

Effects So Far

As of today, I've had 5 doses. The first two were at half dose, just 0.25 mg, just because I was worried about side effects. This week's three doses were the full microdose, 0.5 mg. 

Last Wednesday, when I took the first dose, I felt about the same and was very achy (those flu-like immune system aches). But, the next day, I had no aches for the first time in over a month and my energy was great; it was the best I'd felt in months! By Friday, I had mild aches again, but I managed to run some errands and go to Trader Joe's, all long overdue. I was achy Saturday but felt pretty good on Sunday and managed to help my husband with some cleaning. 

This week, I've had mild to moderate aches every day. I was crashed Wednesday and Thursday, but I had a lot of stress and exertion the night before (a flat tire on my way home from a medical appointment!) and then yesterday, we had heavy rain all day, which affects my illness.

As that article explains, some people with ME/CFS who tried this treatment felt better immediately, others felt better after 3-5 weeks, and for some, it didn't help at all. So, we'll see! 

I'll write more about this treatment, including my response to it, when I have more information to share. If you want to hear more about my fall-winter relapse, immune activation, and how I learned of this new treatment, check out my recent Chronic Illness Vlog on YouTube or below: 

 

Have you tried GLP-1 agonist medications for any reason and at what dose?

 

Did it help you or did you have any side effects? 

 

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

 

I am working on compiling some data on this. 

 

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

Every Sick or Disabled Kid (& College Student) Needs Accommodations

If your child has a chronic illness like ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), long-COVID, fibromyalgia, POTS, Lyme disease, or Ehlers-Danlos Syndrome (EDS), you already know how challenging school can be. But did you know that your child may qualify for legal accommodations? In the U.S, this means a 504 Plan or an IEP (Individualized Education Program). Other countries have their own names for accommodation plans, but whatever they're called, educational support plans are critical tools for helping students with chronic illnesses and disabilities succeed in school. Your child has legal rights to an equal education, no matter what disabilities they are dealing with. 

No matter if your chronically ill child is in Kindergarten, high school, or at a university, they need an accommodations plan for school. Whether you’re just beginning this journey or have been fighting for accommodations for years, the links in this post will give you a solid foundation—plus practical tips, resources, and hard-won advice from a parent who’s been there. I've also incorporated information from other parents in the support groups I started.

All of these posts were updated in 2021 and again this week:

• School Accommodations for Kids with ME/CFS and Related Illnesses - all about the U.S. system, the difference between 504 plans and IEPs, plus tips on finding an Educational Advocate, educating school staff (no matter where you live), and more.
  
• Example School Accommodations for Kids with ME/CFS - lists of real-life accommodations my kids (and others) have gotten in school--schools can do a lot more than they think they can!
• Talking to School Personnel about ME/CFS - based on advice to our son on how to explain ME/CFS to his professors in college (but applicable to younger grades, too)
• How Our Son Went from Couchbound to College - just as important as accommodating your child's current needs is improving their condition so they can manage a more normal school experience! This was a summary of what we think helped our son, who missed 90 days of his senior year in high school, start college on time a few months later.
• Effective Treatments for ME/CFS - My full summary of all the treatments that have helped us over the years. We both now lead fairly active, semi-normal lives.

Please share this information widely, with any parents who might need it.

 

Does your child have an accommodation plan?

 

What accommodations have helped? 

 

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

 

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

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.  

Managing a Long Road Trip with Chronic Illness

 

On my 60th birthday in Glacier National Park

I'm back!

Our Epic Road Trip 

The blog's been quiet this summer because we took our camper on a 5-week road trip from our home on the East Coast to Montana, the Canadian Rockies, and everywhere in between! We traveled over 6000 miles, visited 13 states and 2 Canadian provinces, and enjoyed 8 national parks in the U.S. and Canada (and many state parks). It was an incredible trip, with stunning scenery that filled us with awe: towering mountains, glaciers, peaceful lakes, thundering rivers and waterfalls, thick forests, and lots and lots of wildlife! Highlights included the Black Hills of South Dakota, Glacier National Park in Montana, 4 national parks in the Canadian Rockies, Theodore Roosevelt National Park in North Dakota, and Apostle Islands National Lakeshore in Wisconsin.

I'll share a few photos here, but they don't do the natural beauty justice. Videos do a better job of showing the grandeur and beauty of these amazing places. I put together a playlist of all the videos and shorts (1-3 minutes) from the trip. You can see it on YouTube and pick out the videos you're most interested in or I'll imbed the playlist here: 

 

How Did I Get Well Enough to Take a Big Trip?

Well, that's a long story: over 23 years long! Check out the ME/CFS Treatments tab for a full summary of ALL the treatments that have most helped me and my son (he's now 31 and working full-time) over the last 2+ decades. Most of the time--with a lot of sleep, a daily nap, and piles of pills--I am able to function fairly well for someone with ME/CFS. I can handle short walks (with my heart rate monitor)  and manage the basic activities of daily living.

Most recently, over the past five years, I have struggled with relapses (and I'm sure there will be more) that last several months. My last one was this past late fall and winter. Since the beginning of March this year, I've been very stable. Some of the more recent treatments & lifestyle changes that have helped the most include:

• Treating Thyroid Dysfunction (something that is very common in ME/CFS and long-COVID).
• Switching to a keto-type diet in January 2024, to help control yeast overgrowth and improve energy.
• Adding digestive enzymes (not for GI issues--I don't have any--but for general health).

And, as you'll see below, the way we travel allows me to stick closely to the at-home routines that keep me feeling good at home.

 

How Did I Manage the Travel & Being Away From Home?

Even with being in good shape, a 5-week road trip presents many challenges to someone with chronic illness! I posted some Travel Tips for Road Trips back in April, after our month-long trip to Texas. Those include getting lots of sleep (for me 9.5-10 hours a night, plus an afternoon nap), sticking to my routines, taking all my medications and supplements on time, and using a heart rate monitor to stay within my activity limits (which are pretty broad these days). One of my routines is morning yoga stretches, and I do that each day, too, usually outside, which helps after those long days in the car!

 

Bringing our camper with us helps me a lot--it's our little home away from home! I spent a lot of time making sure I had the right mattress and pillows for it, and now, I sleep really well in it (maybe even better than home). All the time outdoors helps me, too, as I find nature very soothing and rejuvenating.

 

My comfy bed, with a view of Lake Superior!

On this trip, I only had a few mild crash days, when I'd overdone the day before. I definitely pushed myself a bit too hard at times because we were going to such incredible, breathtaking places and didn't want to miss anything, but we took time to rest when we needed it (and we never get up very early!). 

 

Relaxing at our campsite in Iowa

We both find the hours in the car quite relaxing. As I mentioned in that Travel Tips post, I have my supportive back cushion, and we listen to music or audiobooks. I flip through magazines and catch up on social media posts (we often had no cell service in the parks!) while in the passenger seat. And I take my nap after lunch every day, no matter what, either in the car or in the camper.

 

My nap spot in the backseat of the truck

There was only one evening in the 5 weeks when I felt truly awful, but I knew it was yeast overgrowth due to cheating on my diet too many times! I noticed my tongue hurt that morning and at first thought I'd bitten it or had a canker sore, but soon my whole mouth hurt, I had a sore throat, and felt achy and exhausted ... all sure signs of yeast overgrowth! I got back on my diet, took stronger probiotics and antifungals that night, and by the next day, I felt good again.

During an ill-advised evening walk in Banff NP!

And I only had one bad headache on the trip, too, one afternoon in North Dakota, but I was able to get it under control with over-the-counter meds and an ice pack and didn't even need my prescription migraine meds. 

Resting in my lounge chair to help ease my headache

And, of course, I wore a mask every moment that I was in public on the trip, as I do at home, to avoid being exposed to infections because of my immune dysfunction. That's the other nice thing about bringing our camper and eating breakfast and most dinners "at home." I know that even a simple cold could mean a weeks-long (or longer) crash for me, so I'm very careful.

Medications and supplements were another challenge. I have 8 weekly reminder boxes for my pills (most of them extra-large and full!). I was able to fill two weeks at a time, but that still meant refilling them twice on the 5+ week trip. We brought one big plastic bin for all the stuff I take, plus a second one for extras so I wouldn't run out. It took some complicated calculations to figure out how much I needed for 5 weeks before we left! 

 

Two weeks worth of medications/supplements ready for travel!

Staying cool can be a big challenge for me in summer, but luckily, we were traveling in the north for most of the trip! We were blessed with perfect weather much of the time, with daytime highs in the 70's F, and nighttime lows in the 50's or 60's. There's nothing better than sleeping in the camper with all my windows open around my bed! As we came back south, the heat increased, but we only needed to use the air-conditioning in our camper at night twice on the way there and once (our last night camping) on the way home. It got up to 85 F one day at Theodore Roosevelt National Park in North Dakota, so we spent a lot of time in the car on scenic park roads, and my personal neck fan helped when we took short walks!

And we had an incredible vacation! We saw so many stunning views and breathtaking scenery and got to experience these unique, beautiful places up close.

Beautiful waterfront site on Missouri River in SD

Sylvan Lake, Custer State Park, Black Hills, SD

Beautiful views in Glacier National Park

 

Bowman Lake in Glacier National Park

 

 

Mountain goat enjoying dinner in Glacier NP

Bow Lake in Banff National Park, Canada

Elk in Banff NP

Theodore Roosevelt National Park, North Dakota

Apostle Islands National Lakeshore, Wisconsin

 

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

 

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

 

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

 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

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

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

 

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

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

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

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

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

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

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

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

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

 

General Information on Lyme Disease and Other Tick Infections 

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

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

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

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

 

I hope you find this information helpful. 

Have you looked into tick infections?

 

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

  

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

 

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

 

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

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

In the video, I answer these questions:

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

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

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

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

 

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

 

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

  

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

 

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

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

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

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

 

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

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

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

 

Testing

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

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

 

Treatment

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

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

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

 

Results

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

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

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

 

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

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

 

Have you tried digestive enzymes yet?

 

Are there other treatments that help you?

 

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

 

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