2024 Mid-Year Update: Yeast, Diet, No Crashes!

 

While I often mention how I'm doing at the start of blog posts on other topics and in my chronic illness vlogs, I thought it was time for a more comprehensive update. Besides, we just passed the halfway point for the year (!!), so the timing is right. The last time I focused on my own health here on the blog was My 2023 Year in Review back in February, so I'm due for an update!

NOTE: My updates below refer to ratings of how I feel. For details on how I simply track how I feel on a calendar, check out my post, My Progress in 2020 and Goals for 2021 and scroll down to My Health in 2020 and below that, the section called "How Do I Know This?" Or you can watch my short video, Chronic Illness: Tracking How I Feel, Symptoms, and Treatments. I use a 1 to 5 rating, where 1 is good and 5 is mostly bedridden. At the end of each month, I tally up the average of how I felt and also the % of time I spent crashed (a 4 or 5 on my scale). I also rate my exertion each day on a 1 to 5 scale.

 

How I Felt the First 6 Months of This Year

Simply put ... great! It felt like a miracle after my very difficult last three months of 2023, but I've been greatly improved since the start of the year (that's not coincidence--see below for what's making a difference). Most amazing of all: 

I have not had a single crash day in 2024 so far!

For comparison, last November I spent 50% of my time severely crashed, mostly couchbound, and unable to do much of anything. My very few worse days in 2024 have been rated 3--feeling a bit run-down but still able to function. And those were few and far between and always related to yeast overgrowth (see below). 

Even more incredible is that I have been very active so far this year--able to take walks most days, get back into a strengthening routine, go on long (for me - over an hour) hikes with my husband, and even go shopping. I danced at a wedding last month! And with all of that activity, I have not even once worsened from exertion intolerance. It's truly stunning to me.

My rating (1 to 5, with 5 being worst) for the past 6 months has been a steady 2.2. I haven't been that good since 2017. Last year, my average was 2.5 and 2.9 in 2022. 

It's all been good news, and it's been such a joy to be living my life again, able to get together with friends, enjoy my family, and get caught up with work and home.

So, that leaves the big question ... WHY?

Enjoying a 90-minute hike two weeks ago!

Factor #1: Normalizing Thyroid Function

I spent all last year working with my primary care doctor to find the best treatments for my hypothyroidism, after we realized that my thyroid labs were about as low as they could get. It required a lot of trial and error--and patience and persistence--to get new labs every two months, adjust the treatments, and wait to see the effects. But it was well worth the effort. By fall of 2023, my numbers were finally in the normal range for both T3 and T4, I had settled into a stable dose of two medications, and my energy had improved. I then added iodine, which is essential to thyroid function, which helped me to further improve. 

Most surprisingly (to me) was that I lost about 20 pounds last year just due to treating thyroid dysfunction. I made no other changes to diet or exercise (I was actually less active for other reasons explained below)--the weight just slid off me, bringing me back to my pre-illness (22 years ago) weight. What's interesting to me is that I had gained that extra weight gradually, a few pounds a year, even though I was eating a restricted, healthy diet and exercising as much as I was able. That tells me that my thyroid had been dysfunctional for many years, and we missed it due to not testing the right things.

I summed up all the lessons I learned in my post, Diagnosing and Treating Thyroid Dysfunction in ME/CFS and Long-COVID because thyroid dysfunction is extremely common in our diseases, due to endocrine dysfunction. 

 

Factor #2: Yeast Overgrowth and Diet Changes

As I said, by last fall, my thyroid function was almost normal and I had more energy ... but I was still badly crashed and very sick. The reason why was a mystery to me, and I tried everything that had helped in the past to no avail. For the last three months of the year, I had constant flu-like aches, a sign of immune activation and an indication that my ME/CFS was badly flared up. I had more energy, but I felt awful, and if I did anything at all, I got even worse.

Finally, in mid-December, I saw my functional medicine specialist and told her what was going on. I explained that yeast overgrowth was a chronic problem for me (and many others with ME/CFS, due to our immune dysfunction) but that I was already treating it. She asked me to pull my mask down and stick out my tongue and told me I still had visible thrush in my mouth. I was stunned because I take piles of probiotics every day, prescription antifungals daily, and thought I was eating a strict diet. She questioned me a bit about all of that and said that since nothing else was working, I'd need to get extremely strict with my diet--no carbs at all--in order to starve the yeast.

I was desperate, so I did as she said. She recommended a carnivore diet, which is just as it sounds: meat, fish, eggs (a little high-fat dairy is also OK but I'm dairy-intolerant). Within 10 days of changing my diet, those relentless flu-like aches finally disappeared (just in time for Christmas).

I stuck mostly with carnivore, with just a few bites of cruciferous veggies or avocado each day--what I called 97% carnivore. After three months of that, I transitioned to a more keto diet and have kept that up. For me, that means more veggies but still no grains, no sugars at all, and no starchy vegetables. I explain more about my experience with the carnivore diet in this video. Next week, I hope to post a new video, with brief explanations of the diets that are typically best for those with immune disorders like ME/CFS (paleo, keto, carnivore).

Unfortunately, the yeast overgrowth is still very persistent. I am still taking my maximum dose of prescription antifungals, a whole range of probiotics focused on my own gut testing results with the aim of controlling yeast, and herbals antifungals. And I still have to stick to a very strict diet. I was tired Sunday and Monday this week and realized it was again due to yeast overgrowth. I had "cheated" a bit: two cups of popcorn Saturday evening, a quarter-cup of blueberries Sunday. That's all it takes for the yeast to come back and thrive in me. It is barely kept under control with this diet ... but if I stick to it, it is. That's difficult for me, but I realize it is something I can control, and I'm grateful for that.

Since yeast overgrowth (aka candida) is extremely common in ME/CFS and long-COVID and often overlooked, I wrote a blog post about Treating Yeast Overgrowth/Candida that includes lots of different treatments to try (just updated this year).

That's how my year is going so far!

How are you doing this year?

Have you tried treating thyroid dysfunction or yeast overgrowth? 

Have any other treatments helped you?

Let me know in the comments below.

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

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

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

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

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

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

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

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

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

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

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

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

Here are some other areas of endocrine dysfunction:

Sex Hormones:

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

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

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

Thyroid:

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

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

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

Low Cortisol:

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

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

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

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

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Chronic Illness Vlog: Ups & Downs, Thyroid & Yeast, Nature

My energy is very low today, due to a flare-up of chronic yeast overgrowth, but I at least wanted to share my latest Chronic Illness Vlog with you. This is an group of video clips from last week that show an honest view of my life, with all its ups and downs. And I had lots of ups and downs last week, some days feeling well enough (thanks to adjusting thyroid treatment again) to be active and some days feeling run-down or frustrated and overwhelmed ... or both!

Some of the information I mentioned in the video and included in the Notes below the video on YouTube include:

• Thyroid Tests to Request - scroll down to What Helped Me in this summary post of 2022.
• Effective treatments for yeast overgrowth/candida. I am currently doing all of this!
• Sign-up for my e-mail newsletter (goes out at the start of every month).

I'm planning to write a longer post about my recent experiences with both thyroid issues and yeast overgrowth, when I have more energy. 

How are YOU this week?

Have you had a full thyroid panel lately?

Do you struggle with chronic yeast overgrowth/candida?

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

Correcting Sleep Dysfunction in ME/CFS and Long-COVID

(This article was originally published on the ProHealth website on September 18, 2019.)

Sleep problems are one of the most common symptoms of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). Sleep dysfunction is a critical piece of the complex puzzle that is chronic fatigue syndrome, and ME/CFS and long-COVID patients are eager for treatments that will help to improve and normalize their sleep. When I was diagnosed with ME/CFS by my primary care physician, she said, “The first thing to do is to correct your sleep problems. That will make all of your other chronic fatigue syndrome symptoms improve.” She was right! Here are ways to help you fall asleep faster, sleep better, and wake up feeling refreshed.

 

Normal, Healthy Sleep

In order to treat ME/CFS sleep dysfunction, it helps to understand what healthy sleep looks like. A night of refreshing sleep consists of sleep cycles, moving through various stages in a predictable pattern: 

• Stage 1 and 2 sleep (light stages of sleep)
• Stage 3 and 4 sleep (deeper stages of sleep)
• REM (Rapid Eye Movement) when we dream. 

 

Those deep Stages 3 and 4 are especially important for immune health, endocrine (hormone) function, and energy; it’s when our bodies recover and rebuild.

 

A healthy endocrine system, which produces hormones at the right times and in the right amounts, helps regulate sleep (and everything else), as follows:

• A hormone called tryptophan is converted into 5-hydroxytryptophan (5-HTP), with the help of vitamins and minerals including iron, magnesium, calcium, B6, and folic acid.
• 5-HTP is then converted into serotonin, with the help of magnesium, zinc, vitamin B6, and vitamin C.
• Serotonin has many important functions in the body, including regulating mood and ensuring good quality sleep by converting into melatonin.
• Melatonin directly regulates wakefulness and sleep. A healthy body naturally makes more melatonin at night, when it gets dark, and less during the day when it is light.

Note that melatonin and cortisol work together to regulate the sleep-wake cycle. In a healthy body, daylight triggers the body to stop producing melatonin and increase cortisol. Throughout the day, cortisol gradually declines, and darkness triggers the body to start producing melatonin and stop producing cortisol. Many studies have shown that most ME/CFS and long-COVID patients have low cortisol levels all the time. Luckily, the reverse is also true: that correcting sleep dysfunction can also help to normalize cortisol levels.

 

Sleep Dysfunction in ME/CFS

Why do ME/CFS patients feel like we are half-awake all night and still exhausted in the morning? Traditional sleep studies comparing ME/CFS patients to healthy controls often find no measureable differences in our sleep cycles, though some show reduced total sleep time and sleep efficiency. Newer studies, using entirely different ways of measuring sleep, though, are finding that ME/CFS patients have more disruptions in REM sleep and deep stage (3 & 4) sleep. Our brains will sometimes jump right from REM or even deep stage sleep into being awake or in light Stage 1 sleep, instead of cycling through each stage, as is normal. These REM disruptions in the studies correlated with worse symptoms the next day.

 

The hormone side is also not entirely clear. The few studies of serotonin levels in ME/CFS patients have shown contradictory results, though some do show abnormal serotonin function, indicating our bodies aren’t controlling serotonin the way a healthy body should. This matters because sleep deprivation causes a multitude of serious health problems, worsening every aspect of ME/CFS.

 

Sleep Studies

When an ME/CFS patient mentions sleep problems, doctors usually send him/her for a sleep study. The problem is, as noted above, that even carefully controlled scientific studies often fail to show abnormalities in our sleep using standard measures. Sleep studies do have an important function, though. They are designed to diagnose primary sleep disorders, like sleep apnea, restless legs syndrome, and narcolepsy. Plenty of ME/CFS patients also have a sleep disorder (some studies indicate we have a greater risk of primary sleep disorders), and it’s important to diagnose and treat those. Consider a sleep study to diagnose or rule out a primary sleep disorder but don’t expect it to find much with respect to your ME/CFS sleep dysfunction.

 

Treatments for ME/CFS Sleep Dysfunction

The key to correcting our sleep dysfunction at its source is to target those hormones that are responsible for good quality sleep. This is different than taking sedatives to knock you out; it means actually correcting the problem so that your sleep feels normal and natural and you wake up feeling refreshed. There are different approaches to try, and it often takes some trial and error, sometimes combining treatments, to find what works best for you. Work with a doctor to find the right combination and to prevent increasing serotonin too much.

• Melatonin. You can directly supplement with melatonin, which is readily available in any drugstore, at bedtime. Most use 3-5 mg of melatonin, but you can start low, with just 1 mg, and go up, as needed, as high as 8-10 mg. Most patients find melatonin slightly helpful, but it rarely completely corrects sleep dysfunction. Note that regular melatonin helps you fall asleep but quickly wears off, so it won't help you stay asleep. Extended release melatonin can help with both falling asleep and staying asleep.
  
• Tricyclic Antidepressants (TCAs). Most antidepressants work by affecting levels of serotonin, and this class of TCAs, which increase serotonin, are particularly sedating for most people, especially nortriptyline and amitriptyline. TCAs also increase epinephrine (a hormone which affects pain threshold), so they can also be helpful for pain. Use a lower dose for sleep dysfunction than would normally be used for depression, and take it 30 min–2 hours before bed. Nortriptyline comes in a liquid, so it can be started at tiny doses and very gradually increased. A study of ME/CFS patients taking 60 mg of nortriptyline at bedtime showed improved symptoms (but start lower).
• Trazodone. A favorite choice of most ME/CFS experts for treating sleep dysfunction, trazodone is also an antidepressant that increases serotonin but in a different class than TCAs. One study of 66 fibromyalgia patients concluded that “trazodone markedly improved sleep quality.” It is known to increase stage 3 and 4 deep sleep, and it is the least likely sleep treatment to lose its effectiveness over time. However, about 20% of the fibro patients tested experienced tachycardia (racing heart rate). If that happens to you, try reducing the dose or try something else. TCAs and trazodone also block acetylcholine, another hormone, which can cause dry mouth or eyes, digestive problems, and other issues with long-term use. Of the three, amitriptyline has the most anticholinergic effect, nortriptyline less, and trazodone the least of the three. Most start with 25 mg trazodone for sleep and go up, as needed, to 50-200 mg. All doctors should be familiar with using TCAs and trazodone to help with sleep, as these are older, very common medications.
• Tryptophan. Alternatively, you can move further up the hormone chain to increase tryptophan (which converts to 5-HTP and then to serotonin). Although tryptophan is found in some foods, most of those are protein-rich, and both tryptophan and serotonin drop after eating protein.  So, experts suggest taking tryptophan supplements instead, along with a carb-heavy snack or get your tryptophan from more carb-rich foods, like asparagus, leafy greens, soybeans, sea vegetables, cauliflower, and sunflower or sesame seeds. For supplements, start with 200-500 mg and work up – as needed – to 1000-1500 mg, taken before bedtime. However, experts do not recommend supplementing with 5-HTP because it blocks other important neurotransmitters and thus will only be effective short-term and then will stop helping sleep and cause side effects. Don’t combine tryptophan with TCAs or trazodone; that would increase serotonin too much.
• Adequate Nutrients. Whichever treatments you try, make sure you are getting the vitamins and minerals necessary for each of these hormones to convert effectively into the next (see Normal, Healthy Sleep above). This includes plenty of magnesium, which some people also find mildly sedating, so you can take it before sleep. Be sure to get a form of magnesium that is well-absorbed, like glycinate, malate, or l-threonate (which also helps with cognitive function). Common types of magnesium found in most drugstores, like oxide and citrate, are so poorly absorbed that they are used as laxatives!
• Prescription Sedatives. Traditionally known as sleeping pills, sedatives are not the best choice for correcting sleep dysfunction. They help you fall asleep and stay asleep, but they will not improve the quality of your sleep. Older ones, like Valium, actually worsen your sleep quality, further disrupting the deep sleep stages. Newer choices, like Ambien, Lunesta, and Sonata, will not disturb sleep, but they also won’t improve it. They do have a place, though, as an occasional extra treatment, when more help is needed.
• Over-the-Counter Sleep Aids. Antihistamines like Bendaryl (diphenhydramine), anything with a “PM” in the name, and other over-the-counter sleep aids are best used short-term only. Most use diphenhydramine as a sedative, but your body quickly gets used to it and then it won’t work as well. Additionally, it will not improve your sleep quality and has anticholinergic effects over time. These are best used for just for a few days at a time, when you need some extra help, especially if you need them for other reasons, like an allergy flare or temporary pain.

 

Our Experiences

My son and I both have ME/CFS, plus tick infections, but I listened to my doctor all those years ago and treated sleep dysfunction first. Once my son got sick, we did the same for him, and we have both been sleeping a solid 9-11 hours of good quality, normal-feeling sleep every night for over sixteen years … and waking up feeling refreshed most mornings.

 

I first tried amitriptyline at its lowest dose, but it left me groggy in the morning. Next, I tried nortriptyline liquid in tiny doses (and we started with that for my son) and gradually increased the dose as needed, until we each leveled out at an effective dose; then we switched to more convenient capsules. After a year or two, the nortriptyline wasn’t working quite as well, so we added trazodone, again starting low, at just 25 mg. We both ended up (he’s an adult now) at a combination of 50 mg nortriptyline and 100 mg trazodone (low doses compared to what is used for depression). 

 

We both also take timed-release melatonin supplements (3 mg for me and 5-10 mg for him), and I have a prescription for low-dose Ambien that I only use rarely, when I travel. We both also take plenty of magnesium (both malate and l-threonate) and the other nutrients listed above. Lab tests can help to show which nutrients you need more of and which you have plenty of; for instance, we are both very high in B6, so we don't supplement with it.

 

My doctor was right: correcting sleep dysfunction has helped to improve all of our symptoms. When combined with other treatment approaches, like treating orthostatic intolerance and immune dysfunction, my cortisol levels normalized, too.

 

You can read more about our own experiences using trial and error to find the right combination treatment in my earlier post on Correcting Sleep Dysfunction.

 

Sleep Hygiene

Although the sleep dysfunction of ME/CFS can’t be corrected just with standard guidelines for “sleep hygiene,” you do need to promote better sleep, in addition to whatever treatments you try. As one sleep expert explains, getting a good night’s sleep requires an intricate coordination of many different elements, including some of the basics:

• Keep your room dark and cool. Studies show people sleep most soundly when their room is 60-67 degrees Fahrenheit (blankets are fine). Use room-darkening blinds, shades, or curtains.
• Get plenty of daylight during the day. As soon as you wake up in the morning, open the curtains and get lots of natural light throughout the day--it tells your body to stop making melatonin and make more cortisol, making you more alert. That also helps when it gets dark, to tell your body it’s time to sleep.
• No screens two hours before bedtime. Besides electronic devices being stimulating, blue light emitted from them tells your body to stop making melatonin. Try reading a print book, listening to an audio book, or just listening to relaxing music before bed. If you must use an electronic device in the evening, use bluelight-blocking glasses (cheaper or try these, top picks in testing) or screen protectors. I sometimes read with an e-reader before bed, but you can adjust the display for less blue light. On my iPad Mini, I go to Settings, then click on Display and Brightness. Click on Night Shift, and you can set a time period each day when the display will switch to less blue light. Mine is set for Night Shift from 9 pm to 7 am, and I have the "color temperature" all the way to More Warm (which is less blue light). These settings should work on any Apple device.
  
• Wear warm socks. Research shows that warm feet helps you to fall asleep more easily and sleep more soundly. I tried wearing soft, warm socks for my naps and found that it works.
  
• Naps are probably OK! One common sleep hygiene rule you should NOT follow is the advice to avoid daytime naps. That’s for healthy people, not us. Our bodies often don’t make enough energy to get through the whole day. It is far better to take a nap mid-day than to push yourself to stay awake until you are “wired and tired,” making it even harder to sleep at night. My after-lunch nap is an essential part of my day and allows me to function into early evening. My How to Nap video has lots of practical tips for getting effective, proactive rest before you crash.
  

 

Myalgic encephalomyelitis/chronic fatigue syndrome and long-COVID are a complex web of intricate causes and effects, involving every system in the body. When sleep is disrupted, problems in the endocrine, immune, and nervous systems occur, worsening all ME/CFS symptoms in a vicious cycle. Similarly, when you treat sleep problems in ME/CFS, there will be improvements in all of these systems, leading to improved symptoms. Best of all, improving those systems will lead to even better quality sleep, in a positive domino effect. The best treatment approaches not only help you fall asleep and stay asleep but improve the quality of your sleep so that you wake up feeling refreshed and ready for a new day.

 

Suzan Jackson is a freelance writer who has had ME/CFS since 2002 and also has Lyme disease. Both of her sons also got ME/CFS, in 2004 at ages 6 and 10, but one is now fully recovered after 10 years of mild illness and the other is living on his own and working, with ME/CFS plus three tick-borne infections. She writes two blogs, Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com, and wrote the book, Finding a New Normal: Living with Chronic Illness, available everywhere. You can follow her on Twitter at @livewithmecfs.

 

References

 

“Trazodone (Desyrel) Is.” Phoenix Rising website.

 

Alban, D, Alban P. “Use Tryptophan to Boost Serotonin for Better Mental Health.” Be Brain Fit website (April 3, 2019).

 

Bell, D. “Sleep in CFS.” Lyndonville News (January 2005) 2(1).

 

Castro-Marrero, J, Sáez‐Francàs, N, et al. “Treatment and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: All Roads Lead to Rome.” British Journal of Pharmacology (March 2017) 174(5), pp. 345-369.

 

Cleare, A. “The Neuroendocrinology of Chronic Fatigue Syndrome.” Endocrine Reviews (April 1, 2003) 24(2), pp. 236-252.

 

Field, T, Hernandez-Reif, M. et al. “Cortisol Decreases and Serotonin and Dopamine Increase Following Massage Therapy.” International Journal of Neuroscience (July 7, 2009), pp. 1397-1413.

 

Jackson, ML, Bruck, D. “Sleep Abnormalities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Review.” Journal of Clinical Sleep Medicine (December 15, 2012) 8(6), pp. 719-28.

 

Kishi, A. Presentation: “Sleep Disturbances in ME/CFS.” The National Academies of Science, Engineering & Medicine – Health and Medicine Division. May 5, 2014.

 

Kishi, A., Natelson, BH., et al. “Sleep-stage Dynamics in Patients with Chronic Fatigue Syndrome with or without Fibromyalgia.” Sleep (November 1, 2011) 34(11), pp. 1551-60.

 

Lapp, C. “Using Antidepressants to Treat Chronic Fatigue Syndrome.” CFIDS Chronicle (Summer 2001).

 

Morillas-Arques, P, Rodriguez-Lopez, CM, et al. “Trazodone for the treatment of fibromyalgia: an open-label, 12-week study.” BMC Musculoskeletal Disorders (Sep 10, 2010) 11, p. 204.

 

Rowe, PC, Underhill, RA, et al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: a Primer.” Frontiers in Pediatrics (June 19, 2017).

 

Yamamoto, S, Ouchi, Y, et al. “Reduction of Serotonin Transporters of Patients with Chronic Fatigue Syndrome.” NeuroReport (December 3, 2004) 15(17), pp. 2571-4.

 

Yavropoulou, Maria P, et al. "Protracted Stress-induced Hypocortisolemia May Account for the Clinical and Immune Manifestations of Long-COVID." Clinical Immunology (December 2022), p. 245.

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ME/CFS, Lyme & COVID: Relapses and Recoveries

I'll admit I've been procrastinating on writing this post because a) the cycle of relapses and recoveries kept extending, and b) well, it's complicated!

So, here I will simplify it as much as I can: what I've been through the past 2+ years and what I think helped me get back to my "normal" baseline (which isn't too bad, comparatively!).

 

Timeline:

March 2020 - I suddenly and inexplicably got worse. I'm still not sure exactly what triggered the relapse (I tested for COVID over and over since the timing was suspicious but had no sign of infection or even exposure back then). My best guess is that my Lyme got worse because I wasn't treating it effectively and caused a cascade of worsenings/relapse.

That relapse continued for over a year, though things very gradually improved, as I added new/revised treatments (see below).

May 2021 - I was finally feeling good again, after many treatments and a gradual improvement over many months--pretty much back to my "normal" baseline.

May & June 2021 - I got my two COVID vaccines. I chose Moderna because data showed it caused the fewest long-term relapses among those with ME/CFS. They definitely worsened my overall condition & symptoms again.

Late November 2021 - Once again, I had gradually improved (plus some treatments helped) and was back to my "normal" baseline again, able to be active and enjoy the holidays.

January 5, 2022 - I caught COVID at my father-in-law's nursing home, where they had a big outbreak (he and my son also caught it). I was severely ill--mostly bedridden--for about 3 weeks and then began showing small improvements, very gradually.

I continued to feel worse than usual for the next four months, though there was some very gradual improvement. I could tell my immune system was stuck in an over-active state because of heavy fatigue and constant flu-like achiness.

End of April 2022 - With my doctor's help, I tried a somewhat risky treatment, but it worked, and I returned to my "normal" baseline with ME/CFS and have remained there since, in spite of a very busy & active May.

 

Treatments That Helped:

So, what helped me get over these relapses and back to my normal (with ME/CFS) level of functioning? It's complicated. I am very analytical and greatly annoyed by unexplained worsenings of my condition! I am also relentless when it comes to trying treatments and finding solutions, so I tried a lot of things. Because I'm analytical, I keep a lot of data, so I have a pretty good idea of what helped the most.

As best as I can tell, these are the treatments that helped me get back to my normal baseline (which is quite good for someone with ME/CFS).

New and More Effective Treatments for my Chronic Lyme Disease:

Even before that relapse that began in March 2020, I saw signs that my Lyme disease was not well-controlled. My right hip was starting to hurt, which is a subtle sign I often don't recognize right away that the Lyme bacteria is shifting into other joints (usually, it affects my knees). So, when I suddenly got a lot worse in March 2020, my first step was to begin seeing my son's Lyme specialist. I hadn't seen a Lyme doctor myself in several years because I thought my Lyme disease was "under control." Ha! Now I know better.

The Lyme specialist immediately began adding new treatments and ramping up older treatments that I hadn't kept up. I brought her new research from Johns Hopkins on which herbals are most effective against Lyme disease (more effective that the prescription antibiotics usually used). She was already familiar with most of that, so between the two of us, we began adding lots of new treatments, including:

• Restart A-L Complex (Byron White protocol, purchased from my Lyme specialist), which I had used off and on for years. She also advised me to increase the dose, up to 30 drops twice a day.
  
• Add Stephania (used cautiously and at lower doses, as it can add to the effects of beta blockers, which I also take). I only took it for a few months.
  
• Add Samento (Cat's Claw).
• Add Biofilm Defense.
• Add Japanese Knotweed (later, in early 2021)--one of the herbs determined to be most effective in that Johns Hopkins study.
• Add Crypto-Plus (purchased from my Lyme specialist)

All of these treatments together--especially the increased dose of A-L Complex and addition of Knotweed--led to eliminating my Lyme symptoms and improving my overall condition, gradually.

 

Treating Reactivated Viruses:

It's an old story in ME/CFS--our immune dysfunction causes old, dormant infections to reactivate, especially herpes-family viruses, like Epstein-Barr Virus, HHV-6, CMV, HPV1, and others. 

In my case, testing showed that EBV and HHV-6 were--once again--very positive and reactivated, probably from the Lyme infection going untreated and triggering a domino effect of immune dysfunction. 

I also tested positive for adenovirus, which was curious because it's a common virus that normally causes a mild cold in healthy people but not something that typically pops up for me. This could also have been a contributing factor in triggering my long relapse--exposure to a simple cold virus. It has stayed in my bloodstream since then, so I avoided the J&J vaccine, which was based on an adenovirus.

For these ramped-up viruses, we added/increased:

• Restart Famvir (famciclovir) and then replaced it with Valtrex (valaciclovir) a few months later--I take these prescription antivirals that work against herpes-family viruses every few years when mine get too active again. I'm still on Valtrex.
  
• Add L-lysine, a potent herbal antiviral.
  
• Increase doses of olive leaf extract and emulsified oil of oregano, two herbals that are effective antivirals, antibacterials (so help with the Lyme, too), and antifungals.

 

Diagnosed and Treated Hypothyroidism:

In early 2021, my Lyme specialist ran a full thyroid panel, and much to my surprise (because I get my thyroid tested pretty often), this time it showed low T3. She began treating me with a very low dose of Cytomel (liothyronine). Later, after repeat testing showed it was still slightly low, she increased the dose a bit.

I didn't necessarily see an immediate improvement in symptoms, but having a messed-up thyroid couldn't have been helping me. And I did immediately lose seven normally very hard-to-lose pounds!

 

Supported Immune System

In preparation for the COVID vaccines, I took the advice of ME/CFS experts and added some vitamins and minerals to further support healthy immune function. I was already taking most of the supplements they recommended, but I added/increased a few:

• Increased selenium
• Increased zinc and switched to a more readily absorbed form (zinc glycinate)
• Added liposomal vitamin C (1g per day)--the liposomal form is less likely to cause stomach upset.

 

Increased Inosine

Finally, though this also falls under the category of supporting my immune system, I am listing it all by itself because it's really important.

ME/CFS is, at its heart, an immune disorder and most of our symptoms stem from that dysfunctional immune system. We have found three treatments that help to normalize the immune system (in addition to treating underlying infections) that have greatly helped to improve our conditions over the years:

• Glutathione
• Low-Dose Naltrexone (LDN)
• Inosine

Find more details on all of these immune system treatments, which are all inexpensive and readily available, in my blog post on Treating Immune Dysfunction in ME/CFS.

So, I was already taking all of these, but purely by mistake, I increased my dose of inosine in November 2021--I just miscounted the pills in my weekly reminder boxes one week! I simply went up from 5 a day to 6 a day for my "high dose" weeks (you alternate weeks with high dose and low dose), and like magic, after months of struggling, I finally returned to my "normal" ME/CFS pre-vaccine baseline.

 

Post-COVID Desperation and Steroids: 

So, I was already doing all of that above when I got COVID in January and went into another relapse afterward. For four months, I struggled with severely worsened fatigue, constant flu-like aches, never feeling good, and about 2-3 days a week, completely crashing so badly that I was couchbound or bedridden. I was also severely limited in what I could do.

Since this relapse was definitely triggered by my COVID infection, my ME/CFS specialist tried--and tried and tried--to get me COVID antivirals, but between limited supply and restricted use, I was unable to get them.

If you have lingering symptoms post-COVID (worsened ME/CFS and/or "long-COVID"), this should be the first thing you try: antivirals specific to COVID. There are two currently on the market, and they should continue to become easier to access: Paxlovid and Molnupiravir.

I did finally get molnupiravir but never had a chance to try it because by then, we had tried something else.

My constant flu-like achiness (like recurring sore throats or swollen glands or feeling feverish) told my doctor and I that my immune system was still in overdrive, over-reacting even though the acute viral stage was over. Given this, I asked if I could try a very short course of steroids, and she agreed. 

Steroids suppress the immune system, so they are usually not a good idea for those with ME/CFS (and definitely not long-term). Although parts of our immune systems are overactive, other parts are underactive, so suppressing the entire immune system is normally not effective for us and can do some harm.

The idea in this case was to try a very short course of steroids--just five days of low-dose prednisone--to temporarily calm down my immune system, with the hopes that when I went off it, my immune system would come back up in a more normal state. And it worked! Since then, I have felt pretty good (for me), back to my "normal" ME/CFS baseline and able to be more active again. And no more aches!

Steroids are not without risk, even when used short-term. They suppress your immune system, making you more susceptible to infection, so for that week, I was even more careful than usual, avoiding people and crowded places and wearing my mask even more diligently than usual. 

In addition, I had a very uncomfortable side effect: my normally high heart rate rose even higher. The first day I took prednisone, I woke from my nap (lying in bed), with my heart feeling like it was going to leap right out of my chest. That afternoon and evening, my heart rate--which is normally well-controlled with low-dose beta blockers--was 130 bpm lying down with my feet up! I contacted my doctor, and she quickly called in some extra beta blocker (just a small additional dose of what I already take) for me to take in the afternoons while on prednisone. That helped a lot.

Lessons Learned

So, all of this may seem very specific to me and my situation--and it is--but all of it is applicable to anyone with ME/CFS or long-COVID because these were all common problems underlying our disease. Some things that everyone with ME/CFS or long-COVID can try:

• Diagnose and treat underlying infections--because of our immune dysfunction, we almost always have infections behind the scenes making things worse: undiagnosed tick infections (very common in ME/CFS), old reactivated viruses, yeast overgrowth, fungal infections (including mold exposure), and of course, in the case of long-COVID, COVID itself. All of these can be diagnosed and treated.
• Check Endocrine Function--the immune dysfunction of ME/CFS messes up our endocrine systems, which are responsible for the hormones that regulate everything in our bodies. So, get a full thyroid panel (not just a screening test), check 24-hour cortisol levels (with a saliva test), and ask your doctor to check other hormone levels. 
• Treat Immune Dysfunction--as I said, this is at the heart of ME/CFS and causes many, if not most, of our symptoms. Normalizing immune function will help to improve everything. More details on simple, inexpensive immune modulators (and also treating underlying infections) in my blog post on Treating Immune Dysfunction in ME/CFS.
• If you are suffering from long-COVID or a lingering relapse of your ME/CFS due to COVID--ask for COVID antivirals, in addition to the other things listed here.
• Effective ME/CFS Treatments--for a full overview of the treatments that have helped my son and I the most over the past 20 years (and the reason why these relapses didn't completely make me bedridden), see my Effective Treatments for ME/CFS post, for our experiences. 

As for me, I am happy to be back to my own "normal," still needing lots of sleep at night and a daily nap but with crashes rare now and able to take walks and do other active things again! I'm slowly regaining my stamina.

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.

 

 

 

 

Challenges in Treating Orthostatic Intolerance

Part 1 of this series covered Challenges in Diagnosing Orthostatic Intolerance. I apologize for the long delay in writing this second part on Challenges in Treating OI -  a bad crash last fall left me with only minimal writing energy for several months...but here it is now!

If you missed the first part or are new to the topic of Orthostatic Intolerance (OI), go back and read Part 1 and/or my overview post on Orthostatic Intolerance and ME/CFS. The bottom line is that if you have ME/CFS (and possibly if you have fibro, tick infections, or MCAS), then you do have some form of OI, where your body can not hold blood pressure and/or heart rate steady while upright. The good news is that treating OI can improve all symptoms--often dramatically--and treatments are quite cheap and readily available all over the world. Treating OI is what got my two young sons back to school full-time and even playing soccer again, and it is a big part of what allows me to be active again - I now walk and exercise almost daily and can walk for up to about 90 minutes (on a good day) without crashing afterwards!

So, step 1 is to diagnose OI - for details on that, see my ProHealth article, Diagnosing Orthostatic Intolerance, and that previous post on Challenges in Diagnosing Orthostatic Intolerance. Once you have the diagnosis, then you can start trying treatments! My ProHealth article on Treating Orthostatic Intolerance outlines some of the most common treatments that usually help people with OI. However, as with diagnosis, there are some challenges to treatment, and too many people give up too easily the first time they hit a challenge.

Why Treat OI?
Why bother in the first place? Because, though most of us are unaware of it, OI is behind many of the symptoms we think of as ME/CFS - it contributes greatly to fatigue, pain, and brain fog. Most importantly, OI is a big part of exercise intolerance. Treat the OI, and you will greatly improve your ability to tolerate exertion without crashing! That is the piece that was life-changing for my sons and I and so many other people around the world. 

The tips below come from LOTS of experience - both our own and that of hundreds of other patients that we have helped get the treatments they need. Keep these things in mind as you embark on finding your own effective treatments for OI. You'll be glad you did!

Salt and Fluids Are Only the First Step
Many doctors recommend extra salt and fluids after diagnosing a patient with some type(s) of OI, and that is certainly very helpful, but it is only the first step in treating OI. Part of the reason behind why OI happens in ME/CFS and related conditions is low blood volume caused by endocrine dysfunction, and extra salt and fluids can help to increase your blood volume...but only by a small amount. Ingesting salt and fluids only has a minimal impact on blood volume, so while it's necessary, there are still hormonal abnormalities that prevent our bodies from holding onto those fluids, which is why we need extra help. For starters, extra salt and fluids will help, though you need more than just a bit of salty foods. Try these approaches:

• Add extra salt to food (use sea salt or Himalayan Pink Salt) and eat salty snacks, like nuts.
• Drink lots and lots of water, herbal tea, and other non-caffeinated, non-alcoholic drinks.
• Take buffered salt tablets after meals - we like Thermotabs brand. SaltStick is another popular option. Buffered means they have the right proportion of sodium and potassium for your body. They can make some people nauseous, so taking them on a full stomach helps.
• Drink 2-4 liters of electrolyte drinks daily. We started with things like Gatorade but then had to reduce sugar in our diets (you can get Gatorade Zero, which has no sugar, but it still contains dyes). There are all kinds of drink mixes and tablets in all kinds of flavors to add to your water, so it can take some experimentation to find which ones you prefer. We like GU Brew tablets because they have no sugar, no sorbitol (which can upset the stomach), and no artificial colors or flavors. Nuun tablets are similar and contain a very small amount of sugar - they seem to have removed the sorbitol recently also. There are lots of other options - powders sweetened with various things and unflavored salt water drops, like Elete, that you can add to any drink. You can even just add some sea salt to water on your own with a squeeze of lemon or lime. Personally, I'm not one for sweet-tasting drinks, so I like V-8 juice (just don't get the low-sodium version) when I need an extra salt boost - loads of sodium, plenty of potassium, no sugar, and extra veggies!

Again, that's just the first step - you may see some improvement just from adding salt and water, but much more improvement is possible. Some people try weekly saline IVs (my son did for 2 years), so you are pumping up blood volume directly instead of going through the stomach. Those can work well, but their effects are very temporary - your body quickly comes back to its own "normal" state within a day or two - and it's an invasive procedure.

Know Which Type(s) of OI You Are Treating
Refer back to the diagnosis resources I linked to in the opening paragraphs. It's important to know which of many types of OI you have because that will guide treatment. The most common forms of OI in ME/CFS patients are POTS, where the heart rate (HR) goes up while standing, and NMH, where the BP drops while upright; however, some people have rarer forms of OI, where the HR goes down or the BP goes up or HR and/or BP jump all over the place. OI is just an umbrella term meaning that your body can't hold HR and/or BP steady while upright, so find out which types you have. As I explain in the post on Challenges in Diagnosing Orthostatic Intolerance, some doctors tend to focus solely on POTS (it seems to be the best-known OI condition), so be sure to ask for the raw data and details on exactly what your HR and BP did during the test. Your treatment approach may be different if you have "just" POTS or both POTS and NMH or some other form of OI entirely.

Tips for Using Florinef (fludrocortisone)
One treatment option that can work for all types of OI is Florinef. Its sole effect is to help the body hold onto more salt and fluids, so it can help to increase blood volume, which will help with all types of OI. A few facts about Florinef:

• It often works for kids and only rarely works for adults. Experts aren't sure why - it may have to do with the larger blood volume in adults. That said, if it works for a kid, it tends to keep working even after he becomes an adult - that's been the case for my son. So, if you are treating a kid, definitely give Florinef a try. It's what got my sons both back to school full-time. And, if you are an adult, it is still worth a try because it does work for some adults; just don't get discouraged if it doesn't work for you after increasing the dose  - move onto the next thing.
• Florinef Does Not Act As a Steroid and Does Not Suppress the Immune System. This is a very common misconception among doctors, and even the Physician's Desk Reference (PDR) is misleading on this topic. Here are the facts and an explanation, from the top pediatric expert in the world on ME/CFS and OI, Dr. Peter Rowe of Johns Hopkins:

"Some basic physiology might be helpful to people. Florinef (fludrocortisone) is a mineralocorticoid that helps primarily with salt re-absorption in the kidney, hence the mineralo-corticoid label. It has some gluco-corticoid properties, meaning that it helps in stress responses and glucose metabolism like cortisol does. 

Florinef is quite potent mg for mg in comparison to cortisol. But, the glucocorticoid effect of fludrocortisone at doses commonly used for treating orthostatic intolerance (0.1 mg daily) would be equivalent to just 1.5 mg of cortisol per day. This is a very small glucocorticoid effect, especially when compared to an adolescent's maintenance daily cortisol needs of 12-24 mg per day. 

One confusion is that the Physician's Drug Reference book (PDR) lumps fludrocortisone under the glucocorticoid class, mainly because fludrocortisone does have some glucocorticoid properties. Doing so confuses people, because there is no mention about how little glucocorticoid effect it might have when given in the recommended doses. The PDR then incorrectly suggests that Florinef can suppress the immune system. We know this can happen with cortisol and prednisone, and many people stay away from it because of the other widely known effects of glucocorticoids in high doses (so-called Cushingoid weight gain, acne, mood changes, immune suppression, yeast infections). But in about two decades of using Florinef, I have never seen any evidence of immune suppression attributable to the drug, nor has anyone developed unusual infections while being treated with it. It does not suppress cortisol levels. It can increase BP, which is part of why we use it, but this is a mineralo-corticoid effect, not a gluco-corticoid effect.  

Similarly, Florinef has no anabolic (muscle building) steroid properties as might be seen among those who want to gain an unfair advantage in sports. 

It isn't always the right medication for everyone, but it definitely can treat a subset of those with orthostatic intolerance."

Armed with those facts, here are some tips for trying Florinef:

• You need lots of salt and fluids. Since Florinef works by helping the body hold onto more salt and fluids, it can only do its job if plenty of them are available in the body. So, first increase salt and fluids, and then start Florinef (and keep up the salt and fluids).
• Start low and gradually increase dose. Start with just a half tablet (0.05 mg) per day. After a week, if there are no ill effects, increase dose by another half a tablet.
• You might not see any effects until you get to your effective dose. Everyone is different. 0.15 mg (one and a half tablets) a day was enough for our younger son, and on that dose, he was symptom-free about 90% of the time (his ME/CFS was milder than ours). For our older son, though, we patiently worked the dose up to 0.15 mg a day and saw absolutely no effect. We were ready to give up, but our doctor (the wonderful, now-retired Dr. David Bell) told us to stick with it and go up again, to 0.2 mg a day. Wow! It was like someone had flipped a switch! Our son suddenly felt better, had energy, could think more clearly, and was up off the couch, wanting to go to school and play with his friends. It was like a miracle ... and we almost gave up befiore getting to it. Later, as he grew, that dose no longer seemed effective, and we again increased up to 0.3 mg (3 tablets) a day, which did the trick. I have heard of doses as high as 0.4 mg a day, though most people (particularly kids) do well at 0.2 mg a day.
• Florinef can deplete potassium. Since Florinef helps the body hold onto more sodium, it can deplete potassium in the body. For this reason, Dr. Rowe recommends that anyone on Florinef also supplement with potassium chloride (KCl), at a dose of 10 meq KCl for every 0.1 mg of Florinef. So, with 0.3 mg of Florinef daily, my older son takes 30 meq of KCl. Note that this potassium can only be obtained with a prescription; you can not get high enough doses with over-the-counter supplements.

Tips for Trying Beta Blockers
Beta blockers work by blocking certain hormones, like adrenaline (which ones depend on which beta blocker you are taking) that can cause HR and BP to jump around. They will immediately reduce a high HR and are commonly used to treat high blood pressure, but I have found that a low dose beta blocker also helped to stabilize my BP and stop it from dropping when I am upright, so don't discount them if your BP is low or you have NMH. I wrote an entire blog post with information on and tips for finding the right beta blocker, so if you are trying them, please refer to that post for more detailed information.

Here are some quick highlights:

• Start with the lowest dose available. This is SO important because doctors often prescribe too high a dose, especially for ME/CFS patients. Too much beta blocker actually causes fatigue, and we certainly don't need that, right? So, start with the smallest dose available of the one you are trying--some patients even cut them in half to start. You can always increase if there is little effect. When I took my first pill of propranolol at the lowest dose available, my HR dropped 30 bpm within an hour! I was stunned...and excited!
• Avoid short-acting beta blockers. The short-acting ones have to be taken multiple times a day and wear off within 3-6 hours. Each time they wear off, your HR jumps up again. This can actually make your OI worse by introducing these spikes of high HR every time the meds wear off. I started on a short-acting one and found that I felt great while it was working but worse every time it wore off. Plus, I woke up every morning with none in my system and had to lie in bed for an hour waiting for it to kick in before I could get up. Instead, ask your doctor for 24-hour, long-acting type (some, like propranolol, come in both types).
• Take a long-acting beta blocker at bedtime. This accomplishes two things: it helps to prevent random bouts of tachycardia (high heart rate) during the night that can disrupt your sleep, and you wake up in the morning with it already in your system and working effectively. Switching from short-acting to long-acting was a huge improvement for me--I could wake up and jump out of bed and into the shower like a normal person! (yes, treating OI effectively will allow you to shower without crashing, too).
• You might not immediately "feel better." I noticed this myself. I was thrilled to see my HR drop to almost-normal levels and my BP stabilize, but I didn't immediately notice an improvement in my symptoms. However, if it is working (i.e. lowering your HR and/or stabilizing your BP), stick with it. I found that the symptom improvements came over time. By reducing OI, beta blockers (and other treatments) will automatically reduce exercise intolerance. With my HR at lower levels and my BP not plunging when I stood up, I could begin--very slowly--to do more and be more active. I began to do simple exercises, like leg lifts and core strengthening, while lying on the ground, carefully and while monitoring my heart rate. I began to walk, a bit more each week, slowly building up my strength and stamina. This is NOT Graded Exercise Therapy (GET) because you have treated the exercise intolerance first before even attempting to exercise. Improved muscle tone further reduces OI, and the improvements build. The positive results increased for me over time, like a domino effect (a positive one, for a change), as I was able to do more and be more active without crashing afterward.
• If at first you don't succeed, try, try again! There are almost 40 different beta blockers to choose from and some have entirely different mechanisms of action. Just trying one tells you nothing. If you have side effects at the lowest dose or it isn't effective for you even when you increase the dose, then try a different one. Those most commonly used for ME/CFS patients include long-acting propranolol, nadolol, and atenolol, but there are over 3 dozen others to choose from! Even for those in the same class, sometimes a patient will do better on one than another. There are also newer medications like ivabradine that are not technically beta blockers but can be used in similar ways to treat OI.

Patience and Persistence Pay Off!
This is the final thought I want to leave you with. I have lost count of how many times patients have told me "I tried treating OI, but it didn't help," and it turns out they just tried 1 beta blocker (probably at too high a dose) or only a low dose of Florinef. All treatments for OI can require a lot of trial and error to find just the right combination for each person because we are all different. Also, what I have outlined here are just two of many different treatments available for OI - they are the ones most commonly used but not the only options, by far. For more on treatment options, check out my ProHealth article, Treating Orthostatic Intolerance, and Dr. Rowe's summary brochure on OI. Both of these are also excellent for sharing with doctors because they are footnoted with plenty of scientific research to back them up.

Remember, keep trying! It is well worth the effort for the improvement in all symptoms that results.

Have you tried treating OI yet? Do you have any tips to share?

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