I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
A few months ago, I started a trial of sirolimus (known as rapamycin in research and Rapamune commercially), which has been shown to be quite effective for many people with ME/CFS and long-COVID in research studies. In this past post, I listed the articles and videos I watched about this old medication being repurposed for ME/CFS and long-COVID and the studies that have been done so far. I also shared the results of my own informal survey of patients, showing over 50% who'd tried sirolimus found it helpful.
Sirolimus is an old medication, approved for use as an immune suppressant in organ transplant patients. Researchers (and many patients) have been repurposing it for ME/CFS and long-COVID, using it at tiny doses (compared to what's taken after organ transplant) weekly or twice-weekly. It's not only being used as an immune suppressant (especially at such tiny doses); it directly affects some biomarkers researchers have found in people with ME/CFS and long-COVID (see the research resources at the bottom of the linked post). My primary care physician prescribed it for me, it had to be ordered from a specialty pharmacy (all the major pharmacies, like Walgreen's and CVS Caremark, have them), and my insurance covered it 100%.
For the first two months I took sirolimus, I recorded a vlog of my reaction to it. I carefully followed the protocol used in the studies, gradually increasing the dose from 1 mg once-weekly to 6 mg once-weekly (then going back down to 3 mg one-weekly, then trying 3 mg twice-weekly). The results after two months were still not fully clear. My ME/CFS has been quite a bit worse this year than usual, and during those first two months, I continued to have ups and downs and crash days almost every week, though I had a week or two that were better. In the vlog, I recorded my doses, how I felt, and how I thought I was responding to the medication (I didn't have any obvious side effects).
You can watch my vlog of the first two months on sirolimus on YouTube or I will include it below:
After I finished recording the vlog, I continued to take it for another few weeks. Around mid-August, I noticed I had fallen into a repeating pattern the past few weeks of crashing every week between Wednesday and Friday. At that point, two weeks ago, I decided to stop taking sirolimus to see what happened.
Last week, my first week off it, I felt pretty good, with only one mild crash day (early in the week, likely from over-exerting on Sunday). This second week off it, though, has been much worse, badly crashed Tuesday (though, again, I did too much on Sunday!) and moderately crashed on Wednesday and Thursday (though we lost power for 24 hours, so I slept very poorly Tuesday night without a/c). So, this week was not a great test case!
One of my main issues, especially in recent years, has been recurring crashes characterized by immune symptoms, like sore throats and flu-like aches. I do think the flu-like aches have been less frequent the past few months, though mild sore throats have been pretty common lately.
So, my conclusion so far is ... I have no idea if it was helping or hurting!
Since then, I've gotten advice from two people:
My ME/CFS specialist said her patients have seen the best results with sirolimus when increasing the dose very gradually: 8 weeks at 1 mg, 8 weeks at 2 mg, etc. (I followed the research protocol and went up 1 mg each week).
A visitor to my blog shared his own experiences:
"I
struggled with the side effects of Rapamycin for a long time. I trialed
it 4x at varying doses and frequencies. I found it always resulted in a
lot more PEM [post-exertional malaise].
Since, I discovered a few things:
1.
Rapamycin has an inhibition / suppression period for 48-72 hours after
dosing. During this time, I found my baseline dropped dramatically and I
needed to rest a lot - otherwise I’d trigger much worse PEM than usual
2.
Staying at too low of a dose for too long made me feel worse. Per my
doctor, it’s necessary to be between 4-6 mg to get the immune modulating
and anti inflammatory benefits, not just the autophagy [refer to the research I linked to above].
3.
I can now tolerate it much better when I take Life Extension
Bio-Luteolin daily with Rapamycin weekly. Recommended by my ME/CFS doctor
after they saw it helped other patients tolerate Rapamycin
4. It’s the only medication that has improved my very very low T cells."
[NOTE: His experience of worsening for a few days after the dose was not mine. In contrast, I took my dose on Sunday morning and generally felt well through Tuesday, then crashed Wed - Fri, then felt better again on the weekend. That pattern made no sense to me! If what he says about the suppression period is correct, it may be that since my immune system is often over-active (hence the frequent immune symptoms), that suppression helped me for the first few days.]
I found all that very interesting, and I am certainly not done with sirolimus. I would like to try some of these recommendations. Besides, it's a free medication that seems very promising in research studies. However, my son is getting married at the end of the month, so I can't afford to do any more experimenting until after that! I have continued to take microdoses of tirzepatide, a GLP-1 medication (injections of 0.05 ml (.25 mg) 3 times a week), which does seem to help stave off the big, months-long immune crashes.
I'll keep you posted!
Do you have immune (flu-like) symptoms?
Have you tried sirolimus - or anything else that has helped?
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!
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.
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?
We got away for a week's vacation at the start of June, camping in two beautiful state parks in the Laurel Highlands region of southwest Pennsylvania. It's a mountainous area filled with waterfalls, roaring rivers, and peaceful lakes that I've wanted to visit for decades. We were also able to visit Fallingwater, the famous house that Frank Lloyd Wright designed that sits on top of a waterfall!
This 15-minute video brings you along with us to see all the sights. You can watch it on my YouTube channel or I will include it below. Turn up the sound so you can heard all the birdsong and waterfalls!
Although we enjoyed our trip, I relapsed again, out of the blue. It started a few days before our trip, with some mild symptoms, but I had a few very severe days while we were camping. My bed is very comfortable in our trailer (home away from home), and I have a lounge chair that lays flat outside, so I spent a lot of time lying in that and reading or taking naps inside. The weather was perfect for that part of the trip, and it was relaxing to look up at the treetops and listen to the birdsong, even with a sore throat and flu-like aches. We made the best of it. My husband was wonderful, as always. When I woke up badly crashed on Wednesday, he just smiled and said, "I guess it's a Plan B day, then!" (a quote from my book!).
My outdoor resting spot
I had a lot of reading time!
Can't beat the view!
We were fortunate in that many of the major features in our first stop, Ohiopyle State Park, were very accessible, often just 10-20 steps from the car, so on my better (still not great) days, we toured with the car and got out to see the sights here and there--very laid-back.
And as mysteriously as this crash began, it ended! I woke up Saturday morning (our last day before driving home), and I suddenly felt like myself again! I was grateful, and we were able to enjoy a little easy kayaking that day, but it's so frustrating to me to not know why.
Perhaps the short-lived nature of the relapse (about one week) was due to one of the new treatments I've been trying:
Microdosing tirzepatide (which helped in the fall and winter & I restarted during my April/May relapse)
Sirolimus/rapamune (also known as rapamycin) - I'm not up to the full dose yet, but I had been taking it for 3 weeks when this crash hit.
Certainly, neither of those prevented the crash from happening--during a time of year when I usually feel quite good--but perhaps one or both helped me to get over it quickly.
I recently recorded a chronic illness vlog, showing an honest view of my life during an unexpected relapse of my ME/CFS. I usually feel better in spring and summer, so this month-long crash in April and May was a big (and unwelcome) surprise.
Frustrated by yet another relapse, especially during a time of year when I usually feel pretty well, motivated me to dive into some online research of newer treatments being studied for ME and long-COVID. I was specifically focused on treatments that could help to normalize immune function. These relapses of mine (usually in fall and winter) are always characterized by sudden-onset of flu-like symptoms, including sore throat, swollen glands, and severe flu-like aches. Those kinds of immune symptoms indicate that the immune system is over-active, so that's what I was focusing on: how to calm down an upregulated immune system in ME/CFS.
After reading some recent articles, I took a closer look at 3 different treatments that are already available for other conditions and are being studied for ME/CFS and long-COVID: metformin, fluvoxamine, and rapamycin. I read article summaries, watched videos, and looked at research studies. Having narrowed my search down to those three (that had been mentioned in one study as having the potential to correct immune dysfunction in ME), I asked patients in several online patient groups if anyone had tried any of these treatments for ME and what their experiences had been.
The results of this informal survey were very interesting:
Of the 3 people who'd tried fluvoxamine, none said it helped.
Of the 20 people who'd tried metformin, 4 (25%) said it helped them.
Of the 15 people who'd tried rapamycin, 8 (53%) said it helped them. We have a winner!
Besides my own survey, a study using rapamycin to treat ME and long-COVID also had good results.
So, I took all that information to my primary care doctor. Fortunately, she is incredible, listened carefully, looked at the studies I'd printed and my own data from patients, and said, "This sounds great! Let's give it a try! If it helps you, then I can try it with some of my other patients." (she's great!). I started with a tiny dose, following the protocol they used in the study, so I haven't seen any effects yet, but I am recording another chronic illness vlog to document whatever effects (positive or negative) I experience.
NOTE: Rapamycin is the name used in research. The generic name is sirolimus, and the brand name available commercially is Rapamune. You have to get it from a specialty pharmacy (mine was fully covered by insurance and cost me nothing).
So, here is my vlog, following my relapse, my research into new treatments, and my visit with my doctor. You can watch it on YouTube or I will include it below:
For reference, here are some of the resources I read or watched about these treatments & others:
I have written before on this blog about effective treatments that target the unique kind of immune dysfunction in ME/CFS and long-COVID. All of those posts are linked in this Post on Treating Immune Dysfunction, which includes 3 inexpensive, readily available treatments that have helped my son and I over the years, plus resources on treating underling infections.
Do you have immune (flu-like) symptoms?
Have you tried any of the treatments listed here - or anything else that has helped?
Like many people with ME/CFS, I can tell you the exact day that my illness began: March 1, 2002. Multiple studies have indicated that 75-80% of those with ME/CFS have an abrupt onset like that, often triggered by an infection (over a dozen infectious triggers have been identified) or sometimes by a vaccine (in someone genetically predisposed), trauma like a car accident, or even chemotherapy. But are there earlier signs of impending immune dysfunction and illness, even in obviously abrupt onsets like mine that forever divide our lives into Before and After?
BEFORE: Hiking up a mountain while carrying our son!
My Abrupt Onset of ME/CFS:
Before March 1, 2002, I lived a normal, active life. We had two young sons who kept us busy, and in 2000, I had left my career temporarily (or so I thought!) just to slow our lives down a bit and so I could spend more time with our boys. My life at that time without outside work was pretty low-stress, and I was very content. March 1 was a typically busy Saturday: I did an exercise class at the Y while our boys took their swimming classes, we bought groceries and came home to clean the house, and that evening, we had friends over who had 3 kids, and I made dinner and enjoyed their company. By bedtime, though, something felt very wrong. I had a terrible sore throat that I described as "like I swallowed barbed wire." I woke up the next morning badly crashed, in the world of ME/CFS though I wouldn't know that for another year. My life from then on was never "normal" again.
Were There Earlier Signs of Dysfunction?
When we saw our first ME/CFS specialist, the great (now retired) Dr. David Bell, he mentioned to me that most people like me who could point to a specific start date of ME/CFS actually had earlier signs and symptoms. At the time, you don't realize what they signify, but in hindsight, many people can look back and see some patterns that would prophecy ME/CFS, if we knew what to look for. He asked me to think back and consider whether I had any early signs.
When prompted, I realized that I could think of two instances where my immune system was clearly over-reacting, my first encounters with weird reactions to normal things!
In the 9th month of my second pregnancy, in 1997, I got a horrible rash all over my pregnant belly that itched like crazy. My OB/GYN eventually had to give me prednisone ... and it took two rounds of steroids to finally clear it up. She explained to me that it was an autoimmune reaction, my body reacting to the baby as if it were a foreign body it needed to fight and that, while it was not unheard of, it was not a common reaction.
About two years later, in 2000, I got some poison ivy on my forearms while working in our yard. It was isolated to my lower arms and wasn't an especially bad case to begin with, but it wouldn't go away. I spent weeks (very hot summer weeks) soaking my arms in ice baths and covering them with cortisone cream and calamine lotion, to no avail. Finally, once again, two rounds of prednisone were required before the rash subsided.
Later, when I thought about it some more, I also remembered some "weird viruses" I used to get after college, when I was working in my first job, in New Orleans, starting in 1987. About 2-3 times a year, I would suddenly get very sick, but my only symptoms were the most severe sore throat I'd ever felt and complete exhaustion so extreme I couldn't do anything at all. Sound familiar? The first time it happened, I went right to the doctor for a strep test, but it was negative. I stayed in bed and did nothing but sleep and eat for 3-5 days, and then I felt fine again. This happened several times a year and was never accompanied by congestion, cough, fever, or other typical viral symptoms. It often occurred after a very busy period, like back-to-back business trips. I assumed it was some sort of virus, but the exact same pattern repeated over and over.
Just this weekend, I was looking back at an old journal from 2001, just for fun. The first few entries in January were pretty normal, describing our active daily lives with our young sons. But this one made me gasp out loud:
"Fri, Jan. 5 -
Tired, Exhausted. Wiped out. Achy. Struggled to find some energy all day. Had fun in the snow with the boys but now even more tired."
What?? That sounds like ME/CFS, doesn't it? Healthy people don't get flu-like aches without the flu, even if they overdo. I looked back to the day before:
"Thur, Jan. 4 -
Woke up sore and stiff [the previous day was a "normal" one with no unusual activity] and Ken says I was talking in my sleep. I just felt so tired all day - whew. "
Then I wrote this on the following Sunday:
"Sun, Jan. 7 -
I took a step class for the first time yesterday and really overdid it! I had a lot of trouble sleeping last night with lots of bizarre dreams. I felt horrible this morning and ended up spending most of the morning tossing and turning in bed."
Exercise intolerance, anyone?
The following weeks seem fairly normal. I do often write that I'm tired, but I was the mom of two active boys also trying to take care of our house and launch a writing career. But I do remember my husband commenting around that time that it seemed like I was always saying I was tired lately.
In hindsight, it seems like all of this was leading up to that day on March 1, 2002, when a switch was flipped, and my immune system never returned to normal, as it had in the past. I've always thought that the trigger for my ME/CFS was allergy shots (I had just gotten up to my maintenance dose that week), but looking back, it seems like my body was primed for that trigger to finally bring on ME/CFS permanently.
How about you?
When you look back at the time before your own "abrupt onset," were there early signs?
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.
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
202520242023
Avg % Avg%Avg%
Oct3.032%2.513%2.513%
Nov2.43%3.340%3.450%
Dec 2.20%3.245%3.132%
(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!
Resources for More Information
The following articles and videos include more information, from ME/CFS experts, on treating ME/CFS and long-COVID with GLP-1 agonist medications:
Video: Inside the GLP-1 Study for Long-COVID- Details on an ongoing study. In this video from last fall, they were still seeking participants, but I think they are only using full doses in the study (since that is all that is FDA-approved at this time).
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?
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.
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?
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:
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Have you tried digestive enzymes yet?
Are there other treatments that help you?
Share your experiences (or any questions) in the comments below.
Once I had finished summing up last year, I was finally ready to start planning and setting goals for 2025 ... in February!
I've written and talked extensively about Setting Goals When Chronically Ill: Improving Your Life in Tiny Steps. You can read the full chapter excerpted from my book here on the blog or watch the video version of it.
But this year, I was feeling overwhelmed by it all, especially since I didn't even start thinking about the new year until we were a month into it! I expressed these frustrations in a video, How Do You Juggle It All? Without Feeling Overwhelmed. Based on the comments, I think a lot of people--both healthy and sick--could relate to my feelings. Watch it on YouTube or below:
My own goals process had become more and more complex over the years, so this year I decided to take my own advice! I focused on only a few objectives for each of my Lifetime Goals and really tried to narrow my attention to tackle that feeling of always being overwhelmed. And to keep my limitations in mind.
Given the ups and downs in my health last year, health remains a big focus for me (of course). I also got rid of perennial goals that have become a part of my normal
routine, like diet, walking (when I am up to it), daily yoga stretches,
and resting when I crash. What I was left with, under my goal of optimizing my health (given my illness) was:
Set up mold inspection & follow-up on results
Continue to avoid infection risks
Find new primary care doctor (mine of 23 years just retired!)
Talk to my ME/CFS specialist about my changing immune dysfunction
Try therapy for dysfunctional family relationships
I have similarly streamlined goals for the other areas of my life, with a big focus on traveling more this year with my husband and our camper.
Things were going quite well with my new approach, and I was feeling less overwhelmed and stressed. Then, a few days ago, some viral symptoms started. I haven't had a cold or other everyday virus in 20 years due to my immune system over-reacting to most viruses. I immediately thought it must be COVID (which is in a class of its own, plus I don't make many antibodies against it). Three days in, I still feel like I have a cold. It's not nearly as severe as my bout of COVID last summer (and I've had two negative tests so far). I am completely mystified because this just doesn't happen to me, but I am hopeful I will recover in a short-ish time.
Meanwhile, I am resting a lot, ditching all those carefully thought-out plans for the moment, and being very, very cautious. I'm following my own advice and upping the doses of all my herbal anti-virals. I have no idea what's going on with me, but I'm hoping for the best. The first of our month-long road trips is supposed to begin in less than a month, so fingers crossed!
How have you been?
Do you struggle with feeling overwhelmed?
Share your experiences (or any questions) in the comments below.
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.
Octoberto 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.
ChangedProbiotics & 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.
