Clinical Trial for 2 Treatments for ME/CFS & Long-COVID

This is such exciting news for the ME/CFS and Long-COVID communities! Open Medicine Foundation (OMF) is sponsoring a scientifically valid clinical trial of two medications, low-dose naltrexone (LDN) and Mestinon, that are commonly used off-label to treat ME/CFS and long-COVID (off-label means used for purposes other than for what they were FDA-approved).

Dr. David Systrom, MD, is the Director of OMF's Harvard Collaborative Research Center, and an exercise specialist who has seen many ME/CFS and long-COVID patients to diagnose, study, and treat exercise intolerance. He pioneered the use of Mestinon, a cholinergic drug used as a muscle strengthener for other purposes, to treat ME/CFS and long-COVID.

Naltrexone is a very old medication (approved for use in alcohol and drug addiction) that has been used for decades in tiny doses to treat various immune disorders; it helps to normalize the immune system (acts as an immune modulator). There are many dozens of studies on its use in a wide variety of diseases ... but, as it often the case, none specifically focused on ME/CFS. However, ME/CFS expert clinicians have been using LDN for decades, and feedback from patients has shown that it often helps. My son and I have been taking LDN for 16 years, since 2007.

The real exciting news is that this clinical trial will include 160 people and will be a randomized, placebo-controlled, double-blind study. That's the gold standard in science and medicine and will allow the study results to be published in peer-reviewed medical journals, where it will be widely available to the entire medical community. That would be a game-changer for all patients, allowing us to show any doctor the study and ask for the treatments.

In this short video, Dr. Systrom explains (in layperson's terms) the details of the trial, why they chose these two treatments, what he's seen in patients, and what the impact of the study could be. You can watch the 16-minute video on YouTube or here:

This is the start of a new era for ME/CFS amd long-COVID!

What are your thoughts on this new clinical trial?

Have you tried either of these treatments?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Crash! A Mostly Horizontal Week

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

You can watch the video on YouTube or here:

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

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

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

 

How are YOU doing? How was your week?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Movie Monday: Barbie

Now that Barbie is available on streaming, I wanted to review it here because it is such a fun movie! Forget any preconceived notions or even whether or not you like Barbie (or even the idea of Barbie) because this movie doesn't take itself too seriously and pokes fun at its own main character and the commercial world built around her. My husband actually went with me to the theater to see it, and we were both thoroughly entertained.

The movie opens with very stereotypical Barbie scenes: a pretty, pink, perfect world occupied by beautiful Barbies (and Kens). The houses, cars, and everything else look exactly like the Barbie accoutrements you may have played with as a child. But that perfect world comes to a screeching halt when the main Barbie, played perfectly by Margot Robbie, starts to see "the real world" creep into her life and asks her friends--during an epic dance party--if they ever think of death. She's advised to go visit Weird Barbie, played wonderfully by Kate McKinnon, who everyone who was ever a little girl will instantly recognize as the poor Barbie doll tortured by brothers, boys in the neighborhood, or even little girls themselves who just didn't fit the Barbie mold. Weird Barbie advises Barbie to go visit the real world to get some answers to her increasingly unsettling questions. She takes off in her pink convertible and soon discovers that Ken, played by Ryan Gosling, has stowed away. The two of them arrive in Los Angeles, with some epic, hilarious scenes of Barbie-world clashing with the real world. Word gets out that Barbie has escaped Barbie Land, and the executives at Mattel (all men, including Will Ferrell as CEO) turn to a lower-level employee named Gloria, played by America Ferrara, for help. Gloria has happy memories of her days playing Barbie, and her teen daughter, Sasha (played by Ariana Greenblatt), is much too cool for Barbie now. The two of them set out to set things right and find a way to send Barbie back to Barbie Land. Meanwhile, Ken, who has lived his life playing second fiddle to all the Barbies, discovers something called the patriarchy, and can't wait to get back home to tell all the other Kens. Eventually, Barbie and Ken both return to Barbie Land, but with new perspectives and some changes to their world.

Greta Gerwig, renowned for directing Lady Bird and Little Women, both directed and co-wrote Barbie, and brings her smart, feminist viewpoint to Barbie Land. This script is so clever and funny! I'd really like to watch it again because the writing and the set pieces are so chock-full of interesting, smart, funny things that I'm, sure I missed some of them. Robbie and Gosling are excellent as Barbie and Ken, and I loved Ferrara and Greenblatt in the real world. My husband did not play with Barbies as a kid (and instinctively doesn't like the whole concept since his name is Ken and he endured a lot of teasing as a child!) but found the movie entertaining. If you did play with Barbies as a kid, then there are a whole bunch of Easter eggs here you will recognize and delight in, including the outfits, accessories, and friends. Even if you aren't in the know, there are some real-world Barbie facts shown at the end, like explaining Michael Cera's hilarious role as Allan, a real-life short-lived toy introduced as "Ken's best friend." Gerwig has woven in smart, thoughtful concepts throughout, and you can see in the trailer below that the whole production is absolutely eye-popping. This original movie is eye candy but also so much more, with plenty of heart and thoughtfulness woven in among the nostalgia and fun. Highly entertaining.

Barbie is available to buy on several streaming services, including Amazon Prime. If $19.95 is too much for you (though it's reasonable if you watch with family or friends), and you still have a DVD player, try a Redbox kiosk, where you can rent the DVD for just $2.25.

ME/CFS Treatments: Tried & True and New Hope

I recently came across two interesting pieces--an article and a video--from ME/CFS specialists regarding treatments and even, potentially, the possibility of a cure. I wanted to share both with you here.

Tried and True

This blog post article was written by Dr. Eleanor Stein, who is both a patient of and doctor for ME/CFS. You can read her story and learn more about her blog here; her mission is to share science-based information on ME/CFS. This particular blog post is called A New 4-Step Treatment for the Severely Ill with ME/CFS, which she says comes from Dr. Dag Stola and his team at the Røysumtunet Hospital, a center for severe ME/CFS patients in Norway. Most of this "new" treatment plan was nothing really new but the basics that I've known (and used) for years. It's a short article you can read for yourself and share with your doctor, but some of the treatments included are:

• Hydration, with some specific products recommended (we like GU Brew)
  
• B1 - thiamine or benfotiamine (the one we take)
  
• N-Acetyl-Cysteine (NAC)
• Multi-vitamin (we take individual vitamins since we are high in some and low in others)
  
• Multi-mineral (we take individual minerals; the combo pills sometimes contain the wrong types)
  
• NADH (the one I just ordered)
  
• CoQ10 (I take this one - supposed to be better absorbed)(this one combines NADH and CoQ10)
  
• Methyl- and/or Hydroxy-B12 injections (more info at link)
  
• Low-dose naltrexone (though the doses recommended here are much too high for many ME/CFS patients) - more info at link.
  
• Low-dose aripiprazole

I've never heard of that last one, but my son and I have been using most of the rest for many years, and they do help somewhat. I've included links to my own blog posts, if you want more detailed information on any of those. Many of the supplements were mentioned in my post on preparing for COVID vaccines. I certainly wouldn't argue with any of these, but it seems to leave out a few things that have helped us the most over the years:

• Treating orthostatic intolerance (OI), beyond just hydration, which can only do so much on its own.
• Correcting sleep dysfunction - for us, this was absolutely critical. My son recently went through an insurance change/gap and ran out of his meds for correcting sleep dysfunction (not sedatives) and definitely noticed the difference!
• Treating immune dysfunction - this list does include low-dose naltrexone (LDN), but there are other ways to help normalize immune function as well. My blog post at the link also discusses treating underlying infections, which can be extremely valuable, depending on the patient.
  

So, it's an interesting list of treatments, though sort of an odd assortment, based on our experiences. I suppose if you are starting from no treatments at all, as so many patients are, then that's a decent starting point ... though I would tackle sleep dysfunction and OI early on, since they help with everything else. 

I did notice the inclusion of NADH on that list, something that I tried early on in my illness, almost 20 years ago, and had forgotten about. The blog post says the research is mixed on NADH but it does seem to help some patients, so I'm going to give it another try, starting next week.

New Hope

And for a completely different perspective, I was fascinated by this short, 10-minute video from one of the top ME/CFS researchers in the world, Dr. Ron Davis, whose son has severe ME/CFS (so he is highly motivated!). Some of this brief video went over my head--there is some scientific stuff in here--but it's very short, and I was interested to hear about some of this new research. Dr. Davis explains it for us laypeople. He also discusses how crashes keep the cycle going, which I found very thought-provoking. This brief talk is titled Is ME/CFS Curable? and Ron's conclusion was that yes, it probably is. You can watch the 10-minute video on YouTube or here below: 

 

Fascinating ... and this video definitely gives me hope for a better future for us all! And I've been thinking a lot about what Davis says about how crashes perpetuate the disease. Not really news, but he's got me thinking that I'm not resting enough. I've been stuck in a crash for more than a week, so today I am newly motivated to try to rest as much as possible and not push past my limits.

Which treatments have helped YOU the most?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

 

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.

 

TV Tuesday: The Lincoln Lawyer

One of the shows my husband and I have been enjoying this fall is The Lincoln Lawyer, the latest adaptation of mega-best-seller Michael Connelly's books. We love the TV adaptation Bosch, featuring one of our favorite fictional detectives. The Lincoln Lawyer aka Mickey Haller was featured in a book I read this summer, The Night Fire, which included all three of Connelly's most famous characters: Harry Bosch, Rene Ballard, and Mickey Haller. Mickey was previously featured in a movie adaptation of The Lincoln Lawyer, played by Matthew McConaughey. In this new (2022) TV adaptation, there is a different twist, as the famous Lincoln Lawyer is given a Hispanic background.

As in the books, Mickey Haller aka the Lincoln Lawyer, played here by Manuel Garcia-Rulfo, is so-named because he runs his law practice out of his Lincoln Town Car, and he is a fervent idealist, fully believing in every person's right to a strong defense. He's also very, very good at his job. Two of the contacts in his phone are labelled Wife #1 and Wife #2. He's still in love with wife #1, Maggie, played by Neve Campbell, and they both adore their teen daughter, Hayley (played by Krista Warner). Wife #2, Lorna, played by Becki Newton, works as his office manager and legal assistant. She is dating Mickey's long-time investigator, Cisco, played by Angus Sampson. At the start of the first episode, Mickey finds out that a big-time lawyer who recently died left his entire practice and all his clients to Mickey, so the team moves into the fancy law office left to him, though Mickey still does his best thinking in the car. Also in that first episode, he successfully defends a young woman named Izzy, played by Jazz Raycole, and hires her to be his driver. The biggest and most infamous client he has inherited from the other lawyer is a tech billionaire named Trevor Elliot, played by Christopher Gorham, who's been accused of killing his wife and her lover. That big case is the focus of much of season 1, while Mickey and Lorna sort through the practice and clients left to him. As season 2 begins, Mickey is focused on clearing the name of a man who was unjustly accused of murder, serving time in prison after Mickey lost his case. That loss and imprisonment of an innocent man weighs heavily on Mickey. He also ends up defending a woman accused of murder, whom he recently slept with.

My husband and I are halfway through season 2 and are both really enjoying this show. The casting works perfectly, and Garcia-Rulfo is excellent as Mickey. The mysteries/cases he's working on are twisty and surprising, with lots of suspense. Alongside the tension, there is plenty of humor, which we always appreciate in a TV show or movie, and even a bit of romance as Mickey tries to move on while still caring so much for Maggie, and Lorna and Cisco grow closer. We usually juggle a dozen or so shows at a time, and when I recently asked my husband which one he's enjoying the most, without hesitation he answered, The Lincoln Lawyer. It's a great adaptation of the novels of one of our all-time favorite mystery/suspense authors. Now, I'm waiting for an adaptation of the Rene Ballard books!

The Lincoln Lawyer is currently available with subscription on Netflix and Apple TV, as well as for a fee on various other services, including Amazon Prime ($1.99 an episode; first episode free).

Virginia Vacation Vlog: Fabulous Fall Foliage!

I haven't posted on the blog in a while because we were on vacation last week (and I've been catching up this week - I still have 200 more unread e-mails to go!). We drove down to Virginia with our camper and spent a very relaxing week at two wonderful state parks, surrounded by stunning natural beauty!

I often mention here on the blog how healthy it is to spend time outdoors, and scientific research bears that out. In my book, I included a chapter, The Restorative Power of Nature, that details the scientific evidence that time spent in nature has measurable positive effects on both mental and physical health. That chapter also includes tips on how to bring nature's benefits into your own life, no matter how restricted you are; studies show that even looking at pictures of nature provide benefits. You can read an earlier version of that chapter/article here on the blog. 

So, with that in mind, I am sharing with you a Vacation Vlog I put together, with loads of videos and photos from our camping trip last week. My recommendation is to watch it on a larger screen, like a tablet or laptop, expand the view to Full Screen, and turn up the volume so you can hear the sounds of nature, too. That way, you, too, can benefit from the wonderful natural beauty we were immersed in last week, including brilliantly colorful fall foliage, peaceful lakes reflecting those vibrant colors, and even some wildlife. 

You can watch the video on YouTube or here below:

 

You will see that I was mildly active on this trip, taking short, easy hikes and kayaking with my husband. It is much easier for me to do those things when we're on vacation because there is no stress, no responsibilities, and no obligations! We typically do one mildly active thing after breakfast (if I am up to it), and the rest of the day is very restful and quiet. It is also only possible for me to do these things because I have treated Orthostatic Intolerance (OI), which is a huge contributor to the exertion intolerance of ME/CFS and long-COVID. I also mention in the video that I use a heart rate monitor to stay within my limits.

I hope you enjoyed that mini vacation!

How do YOU enjoy nature within your limitations?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter/X.

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

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

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

How are YOU doing?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

TV Tuesday: Who Is Erin Carter?

My husband and I recently watched the Netflix limited series Who Is Erin Carter? This fast-paced, suspenseful thriller has a unique premise and kept us rapt for its seven intense episodes.

Erin Carter, played by Evan Ahmad, is a British teacher working in Spain and living with her daughter, Harper (played by Indica Watson), and her husband, Jordi (played by Sean Teale). They seem to be an ordinary, happy family until one day, armed robbers attack a supermarket while Erin and Harper are shopping. Erin displays some unusual skills for a wife/mom/teacher to help thwart the robbers, but one of them recognizes her. Her heroism at the grocery store--and the attention it brings--sets off a chain reaction of events that put Erin and her family in great danger. She gets dragged into helping their next-door neighbor, Emilio (played by Pep Ambros), who is a police officer and her husband's friend, with some nasty criminals. In each episode, things get more dangerous, and Erin shows more unusual aptitudes. It is clear she is a survivor and will stop at nothing to protect her family, but where did she learn all of these things? Who is Erin Carter?

The action begins in that first episode and continues at a breakneck pace here, with Erin getting involved deeper and deeper in the local criminal world, against her will, while trying to protect her family. There is ample suspense, as the mysteries surrounding Erin grow, plus figuring out what Emilio is involved in. We are not usually bingers, typically watching two episodes of TV each evening, of two different shows (old-school), but there were times when we finished an episode of this show and immediately watched another because the tension and stakes were so high. The truth of who Erin is and where she comes from was revealed about halfway through, but there was still plenty of suspense as Erin's past intrudes on her present-day life. We were both thoroughly entertained by this original, nail-biting thriller.

Who Is Erin Carter? is a Netflix original so is only available on Netflix.

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

 

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

Key Points:

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

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

What Does Thyroid Do?

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

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

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

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

My Thyroid Story

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lessons Learned

Testing:

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

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

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

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

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

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

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

Treatment:

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

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

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

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

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

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

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

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

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

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

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

Resources:

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

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

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

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

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

 

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.

TV Tuesday: And Just Like That ...

Back in July, my husband went away for a week to play golf with his two best friends from high school in their hometown. Major Oklahoma road trip for him, and major alone time for me! I was searching for the perfect TV show for me to watch on my own, and after several false starts, I finally settled on And Just Like That ..., the sequel/reboot of Sex and the City. This show didn't even occur to me at first because--admission time--I never watched Sex and the City! I missed that whole 6-year-long pop cultural phenomenon (I was busy with my kids), though of course, I heard about it and recognized the four actresses who starred in it. But I gave And Just Like That ... a try because it was about women my age (ish). While it's not a perfect show, I enjoyed watching it during that week alone and during lunch on golf days since.

Carrie Bradshaw, played by Sarah Jessica Parker, was at the center of Sex and the City, and she is back here, along with two of her best friends from that previous show: Miranda, played by Cynthia Nixon, and Charlotte, played by Kristin Davis (Samantha has moved away). At the start of the first season, all three of them are married (presumably to the men they ended up with at the end of Sex and the City) but not all are happy. I'll avoid spoilers here, though I already knew what happened in the first episode from seeing it on the Today Show! They each make some new friends, too. Dr. Nya Wallace (played by Karen Pittman) is the Black law professor in Miranda's new program at Columbia. Che Diaz (played by the wonderful Sara Ramirez of Grey's Anatomy fame) is a non-binary, bisexual, half-Mexican podcaster, who asks Carrie to be on her podcast discussing sexuality (the show's new version of Carrie's old newspaper column). Miranda is quite taken by Che when she meets them. Lisa Todd Wexley, a very accomplished, wealthy Black woman played by Nicole Ari Parker, is Charlotte's new mom friend from the private school their kids attend. And Carrie ends up befriending her real estate agent, Seema Patel, played by Samita Choudhury. As the show moves forward, all of the women deal with their own highs and lows: divorce, death of someone close, sexual wondering/awakening, dealing with teen kids, work-life balance, and more. They are also dealing with the more minor aspects of aging, like hair turning white. 

I watched the two seasons that are currently available and enjoyed getting to know these characters. I made a point in my description above of pointing out the race or ethnicity or sexuality of some of the new characters because it felt so obvious to me that the show was making a concerted effort to update itself and become more diverse. I'm guessing the original show was pretty focused on the four white privileged women at its center? Don't get me wrong--I was happy to see a diverse, interesting cast, but it sometimes feels a bit forced here. And, almost all of them are still quite wealthy and privileged! But I enjoyed most of the characters, old and new. It was refreshing to see some of the issues and situations of 50-ish women get some attention on TV; that's a rare thing. The characters all get their own storylines, background, history, and dreams (even the newer ones), but somehow it didn't feel like too much. I'm assuming, from the title, that the original show was quite outspoken about sex, and this one is, too. This is not a show for the faint of heart or the easily offended! From gay sex to teen sex and much, much more, this is a very open, honest, sexual show. Overall, it's not a perfect show, but it was enjoyable entertainment for me and a refreshing change of pace.

There are currently two seasons of And Just Like That ... available on Max (formerly HBO Max). A third season is coming in 2024, according to IMDb.

Peace and Tranquility in Nature

In my book, I included a chapter, The Restorative Power of Nature, that details the scientific evidence that time spent in nature has measurable positive effects on both mental and physical health. That chapter also includes tips on how to bring nature's benefits into your own life, no matter how restricted you are; studies show that even looking at pictures of nature provide benefits. You can read an earlier version of that chapter/article here on the blog. With that in mind, I wanted to share some photos and video of some of my own recent time spent outdoors, which provided a much-needed respite in the midst of a busy month.

First, in spite of weeks of rain, we managed to get out for a couple of nights camping. It was a tight squeeze, with everything else we've had going on, but those two days of complete relaxation outdoors were worth the rush to get there. We took our pop-up camper to a beautiful state park in Maryland, less than an hour from our home. With views from our campsite of the Elk River and expansive views of the Chesapeake Bay near the historic lighthouse, we soaked in all the sights and sounds of nature. Here, I put together a video of photos from our short trip. View on YouTube or below:

Expand the view to full-screen, and you can also enjoy the peace and tranquility of nature!

Just a few days after that camping trip, we met our sons (and one girlfriend) at a rented lake house for the weekend. Unfortunately, the weather did not cooperate, and a tropical storm sat over the area for much of the weekend (and the following week!), but Friday evening was beautiful. My husband and I got the kayaks out on the lake, and we all enjoyed a stunning sunset over the water. In spite of the rain, the rest of the weekend was super-relaxing, and we loved having that time together as a family. A few photos:

I find being near the water especially peaceful and restorative.

Have you been able to spend any time outdoors lately?

Or even just looking at nature through your windows?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Excerpts from My Book on Living with Chronic Illness

I am home briefly in between trips - three trips in 10 days' time! It's a busy month with a lot of family stuff, so I thought I would share some videos here today.

Since I started my YouTube channel in February 2021, I have made quite a few videos based on chapters from my book, Finding a New Normal: Living Your Best Life with Chronic Illness (available everywhere, in print and e-book, and more info on the book at that link). This book is meant for anyone living with any kind of chronic medical condition, with a focus on emotional coping, daily living, healthy relationships, and figuring out what your best life is, within your own restrictions and limitations.

I recently made a couple of brief videos (YouTube Shorts, under 1 minute each), with a quote from the beginning of two chapters:

Who Do You Tell and What Do You Say? - all about deciding what to reveal and to whom about your medical condition.

The Hidden World of Invisible Suffering - how chronic illness showed me a hidden world with lots of people facing challenges others don't see.

And these are longer (12-25 min) videos, based on full chapters from my book:

Get Out! Nature Improves Health - based on the chapter, The Restorative Power of Nature, includes some photos and videos of nature, plus tips on how to enjoy and get the benefits of nature, no matter what your limitations.

A Plan B Day - a useful concept with specific steps to help you prioritize, reduce stress, and listen to your body.

You're Right Where You Need to Be - how techniques like acceptance, giving in, and living in the present can help you to live your best life with chronic illness.

Finding Joy in Every Day - simple habits that can help you to identify the small joys in your everyday life and create more of those moments, to improve your quality of life and happiness.

What Are You Looking Forward To? - one simple tip I learned from a wonderful psychologist that can help when you are feeling stuck in a rut.

Celebrate Everything, Big and Small - when you celebrate the small stuff - with minimal effort! - you add joy to your life and give yourself and your family something to look forward to. It's fun! 

So, I hope that will provide some useful information to you while I'm away.

What tips and strategies help YOU live with chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

 

TV Tuesday: Daisy Jones and the Six

Last December, I read Daisy Jones and the Six by Taylor Jenkins Reid (my first novel by the popular author), and it surprised me in a good way. So, when the TV adaptation was released this spring, my husband (who had not read the novel) and I watched it together. We both enjoyed the show very much, and it was fun for me to see the characters and music come to life on the screen.

It's the story of a 70's rock band, from it's humble beginnings in Pittsburgh to its skyrocket to fame in California to its sudden, unexplained demise. But it's also the story of its two lead singers who were both passionate, charismatic, damaged people: Billy Dunne and Daisy Jones. As with the novel, the story is told in hindsight, as an oral history of the famed (fictional) band, based on interviews with its members and other people who were involved. So, from the very beginning, you see the band members as they are today, talking about their propulsive rise to rock icons. The whole thing began with Billy Dunne, played by Sam Caflin, and his brother, Graham (played by Will Harrison) pulling together a band in their hometown of Pittsburgh with their friends. Their band was called the Dunne Brothers, and after playing some local and regional venues and slowly growing over the course of six years, they were noticed and invited to record their first album. The band's members had changed a bit over the years, finally comprising Billy as lead singer, Graham on lead guitar, Warren (played by Sebastian Chacon) as the easy-going drummer, Eddie (played by Josh Whitehouse) as the ever-resentful bassist who wanted to be lead guitar, and keyboardist Karen (played by Suki Waterhouse). After moving to L.A. and being renamed The Six, they recorded an album and went out on tour, living the wild rockstar life. Billy, in particular, got out of hand, with excessive drinking, drugs, and women, in spite of his beloved (and pregnant) wife, Camila (played by Camila Morrone), back home. Meanwhile, a young girl who had named herself Daisy Jones (played by Riley Keogh) grew up in that world of rock and roll, first as a groupie, but with dreams of being a star herself. Eventually, their mutual manager, Teddy Price, played by Tom Wright, brought Daisy's raw songwriting and singing talents to The Six, and there was instant chemistry between Billy and Daisy. Billy, though, was reformed by then and fully committed to Camila and their daughter. That passion and tension are at the heart of this band, as Daisy's inclusion takes them from moderately successful to global superstars.

It was really fun to see this novel as a TV series because while I was reading it, I kept wishing I could hear the music, which is at the heart of the story. The casting here is excellent for all of the characters, but Sam Caflin and Riley Keogh as Billy and Daisy really make their larger-than-life roles feel real (Riley is the granddaughter of Elvis Presley, so charisma and musical talent run in her family). The show is filled with catchy, original music; the band's full album, Aurora, is brought to life in recording sessions and scenes on stage. The story encompasses both the personal lives of the band members as well as the band's meteoric rise to fame, with spotlights on Billy and Daisy. My husband and I were both fully immersed in this fictional rock band's story and enjoyed going along for the ride.

Daisy Jones and the Six is available on Amazon Prime.

Movie Monday: Air

Last weekend, we decided to watch a movie, and I suggested Air. My husband said, "I really don't have any interest in a movie about sneakers." I told him I didn't either, but I'd heard it was a good movie. So, we popped some popcorn and watched it! We both enjoyed this entertaining movie with an all-star cast very much.

Air is based on the true story of how the concept behind Air Jordans revolutionized the athletic shoe industry and changed Nike from being last among its competitors in basketball shoes to the undisputed leader (not to mention earning many millions of dollars). In 1984, Rob Strasser, played by Jason Bateman, is working in marketing in the lagging basketball division of Nike. Sonny Vaccaro, played by Matt Damon, works in a unique position in the group, as a talent scout, going to high school and college games around the country, looking for upcoming new talent to convince them to wear Nikes on the court. Nike is losing this race, though, with most pro basketball players wearing Converse or Adidas shoes. Then Sonny spots a young Michael Jordan and sees something special in him, something that no one else has noticed yet. The basketball team at Nike usually chooses three or four players to sponsor, but Sonny goes to Nike CEO, Phil Knight, played by Ben Affleck, and convinces him to spend their entire budget on this one young, inexperienced player. When Jordan's agent won't work with him, Sonny goes right to the center of power: Michael's mom, played by Viola Davis. Sonny shows up at their house and talks with Michael and his parents, just asking them to hear him out. They agree to come into Nike to hear their pitch (over the complaints of a very angry agent!). Now Nike needs something spectacular to lure the Jordans to Nike. Sonny comes up with the wholly new idea of designing a shoe around Michael Jordan and works with shoe designer Peter Moore, played by Mathew Mayer, to make it happen. The rest is sports and pop culture history!

In case I wasn't clear up front, I have absolutely no interest in televised sports, basketball, sports icons, or athletic shoes. But I loved this movie. That top-notch cast is paired with great writers (and the incredible true story) to create an engrossing, gripping drama. In spite of not really caring about the subject matter, my husband and I were both rooting for the team at Nike and got caught up in the excitement of their ground-breaking approach. Sonny, with his enthusiasm and vision, is an especially likable character. And the nostalgia here is wonderful! The 80's clothes, cars, TV ads, and setting are backed up by an awesome 1984 soundtrack. We were thoroughly entertained by this compelling movie.

Air is now streaming, available on Amazon Prime.

NEWLY UPDATED: Treating Yeast Overgrowth (Candida)

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

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

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

• Paleo Chocolate Smoothie
• Sugar-Free Dark Chocolate Bark

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

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

Do you struggle with chronic yeast overgrowth/candida?

What treatments for yeast overgrowth have most helped you?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Tracking: Symptoms, Treatments, Exertion & How I Feel

For over 21 years now, I have used a simple system to track important aspects of my chronic illnesses at the end of each day: how I felt, my exertion and stress levels, any unusual symptoms, and stopping/starting/changing treatments. I just take five minutes to jot down a few numbers and a few notes on a calendar before bed. Over the years, this data has helped me to get diagnosed, find patterns in my symptoms (including how much exertion or stress leads to a crash/PEM), and figure out whether or not treatments are helping.

In this brief new video, I explain how and why I do this, so that you can set up your own tracking system that works for you. You can watch it on YouTube or below:

 

My system is still mostly paper-based (other than heart rate tracking and step counting), so if you use apps or other electronic means of tracking, I'd love to hear about it.

How do YOU track symptoms and other aspects of your chronic illness?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Movie Monday: Are You There, God? It's Me, Margaret.

Back in July, while my husband was in his hometown in Oklahoma golfing with his two closest high school friends, I invited my own childhood friend, Michelle, to visit for the weekend. We talked nonstop and had a great time being back together. In the evening, we thoroughly enjoyed revisiting our shared childhood with the movie adaptation of Are You There, God? It's Me, Margaret, that coming-of-age classic novel by Judy Blume for every girl born after 1950.

In case you somehow missed this childhood rite of passage, as the story opens in 1970, eleven-year-old Margaret (played by Abby Ryder Fortson) is devastated to come home from summer camp to find out she and her parents are moving from their New York City apartment to a home in New Jersey. Margaret's Jewish grandmother, Silvia (played by Kathy Bates), is even more upset because she and Margaret are close and spend a lot of time together. As her dad, played by Benny Safdie, and her mom, played by Rachel McAdams, unpack boxes in their new suburban home, Margaret begins to meet some of the kids her age in the neighborhood. Nancy, played by Elle Graham, is a little overwhelming at first, but she's very welcoming to Margaret, saying she can be the fourth in their group of best friends, and Margaret is both impressed and intimidated by Nancy's confidence and sophistication. As Margaret's mom, who is an artist, struggles to fit in with the other suburban mothers, Margaret experiences all kinds of firsts--first bra, first boy-girl party, first kiss, first period--along with the exciting and frightening onset of adolescence. She visits her beloved grandma in New York, and she struggles to figure out what religion she wants to be (her mom was brought up Christian, so they say it is Margaret's decision). All of these classic coming-of-age moments are set against the nostalgic backdrop of 1970's suburbia.

This novel was first published in 1960, and it seems like Judy Blume made the right decision to wait until now for a film adaptation. Director Kelly Fremon Craig does an outstanding job of bringing this beloved icon of adolescence to the screen. The 1970's fashions, furnishings, hairdo's, music, and sets bring that era to Technicolor life with great authenticity. It's the perfect backdrop for Margaret's struggles with growing up, which girls today can still relate to. The cast is wonderful, with young Abby creating a Margaret who is exactly as we imagined. Rachel McAdams is excellent as a mom struggling to fit in with the other parents (I don't recall if that was a part of novel, but it works perfectly here, with all us grown-ups watching the film), and Kathy Bates is her usual fabulous self as Grandma Sylvia. The adaptation is faithful to the original book (as best as I remember, anyway), including the important focus on Margaret's struggles with religion, as she talks to God in her own way. My friend and I were delighted with this nostalgic step back in time and recreation of one of our favorite books. It was fun, joyful, funny, and worth the decades-long wait!

I highly recommend inviting your childhood best friend over to watch this movie--or calling her up to watch at the same time while on the phone.

Are You There, God? It's Me, Margaret. is currently available to rent on Amazon and several other streaming services.

Michelle and I as kids in 1971, and last month when she came to visit: