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

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

 

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

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

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

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

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

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

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

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

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

 

General Information on Lyme Disease and Other Tick Infections 

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

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

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

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

 

I hope you find this information helpful. 

Have you looked into tick infections?

 

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

  

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

 

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

 

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

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

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

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

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

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

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

Roadmap to Effective Treatments:

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

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

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

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

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

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

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

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

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

 

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

What treatments have most helped YOU?

Please leave a comment below.

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

Summaries of 2023 ME/CFS & Long-COVID Research and More

It's somehow the end of January already, and I'm way behind on my planned 2023 wrap-ups, so I wanted to get this one up before any more time passes. There are two excellent summaries, looking back at 2023 for ME/CFS and Long-COVID patients, that I want to share with you.

2023: Looking Back on Back on a Year of ME/CFS Research

This post, written by the blog ME/CFS Skeptic: a Critical View into ME/CFS Research, provides an easy-to-understand, patient-centered summary of about 15 different ME/CFS and long-COVID research studies that the authors deemed "most interesting." They've already done the work of explaining each study in simple terms, so you can just scroll through their summary. Some interesting things I noted while reading it:

• Some aspects of ME/CFS that have long been accepted--like low NK cell function--were not confirmed by the studies cited here. I suspect that is mostly due to differences between patients, how we are all so different, as well as some studies focusing on small groups and differences between short-timers and those who've been ill for much longer.
• Virus studies failed to find any specific viruses causing ME/CFS and concluded that we likely have dysfunctional immune responses ... which we already know! But it's good that researchers are beginning to zero in on that.
• New population studies seemed interesting at first but were definitely flawed. One relied on asking people if they'd been diagnosed with ME/CFS by a medical professional--we all know how rarely that happens! Some were surprised the number seemed so much higher than before COVID, but I suspect it is actually much higher.
• Good news that researchers continue to dig into genetics and the gut. Now, I'd like to see more research focused on immune dysfunction!

Looking Back at 2023 in ME/CFS, Long-COVID, and FM - the Most, Best, Cleverest, and Strangest

As usual, Cort Johnson of the Health Rising website (highly recommended!) has pulled together a lot of complex information into a very easy-to-read, even entertaining format, with all kinds of creative "best of" and "worst of" categories. While some reference the same studies as the above summary, there is a lot here that is new. Some highlights:

• Encouraging findings in the field of mitochondrial dysfunction.
• Lots of interesting findings in the growing field of long-COVID research, including high serotonin levels.
• Call-backs to research from decades ago that noted that clotting could be a factor in the blood of ME/CFS patients (I remember these studies and took them to my doctor), now in the forefront again, thanks to the study of micro-clotting in long-COVID.
• New funding for "long Lyme" (previously called chronic Lyme), which is long overdue.
• New "long cold" research on another coronavirus that causes colds and can lead to ME/CFS. The more researchers expand this concept of "long" infections (i.e. post-infection ME/CFS), the more it will help all of us.
• Plus, a new study on lasting illness after the COVID vaccines. I experienced this, as did many others, and patients have long reported that vaccines can trigger ME/CFS--another step forward in awareness among the medical profession!
• New clinical trials for treatments.
• The Mayo Clinic's massive turn-around from the worst place to go for ME/CFS in the US to actually listening to patient advocates and updating their protocols.
• There's a whole lot more here to peruse, all written in short, snappy (even fun) blurbs - scroll through.

 OK, time for some dinner! I hope you find all of that as interesting as I did.

As for me, my months-long severe relapse that ended 2023 has mostly stayed in 2023. I'm pleased to report that I am doing much, much better, mostly due to a new diet that finally got my yeast overgrowth under control and all the work my doctor and I did last year to normalize my thyroid function. The first few weeks of the new year, I felt better than I have in years! I'll write about it here as soon as I can. In the meantime, this Chronic Illness Vlog 1/8/24: I'm Back, Baby! The Diet That's Helping explains some of it, and I'll be posting a new video all about the diet I'm trying next week.

I hope you find all this research news as encouraging as I do!

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.

Lyme Research: Genes That Could Identify Long-Term Lyme Disease

It is estimated that 20% of patients with Lyme disease (even when treated early) don't get rid of the infection and instead develop chronic symptoms (often ME/CFS) and potentially permanent neurological or cardiac damage. My son and I both fall into this category: he got Lyme in 2007, and I got it in 2008 (in addition to the ME/CFS we already had), and we both require continuous treatment even now to keep symptoms and damage at bay. In his case, he also had co-infections (bartonella and babesia) that went undiagnosed for over three years, making it even more difficult to eradicate the Lyme disease. Other people may have Lyme and/or other tick infections for years, even decades, without being accurately diagnosed or treated and are now stuck with it as a chronic condition.

New research conducted at Mt. Sinai in New York has identified 35 genes that are highly expressed in people with long-term Lyme disease. These exciting new findings could lead to diagnostic biomarkers for long-term Lyme, which is difficult to diagnose and even not believed in by some doctors. It could also potentially lead to new treatments, based on specific RNA levels in the body.

This study was conducted using blood samples from 152 patients with long-term Lyme to measure their immune response and compared to data from 72 patients with early Lyme disease and 44 uninfected controls. Researchers found a unique inflammatory gene signature that differentiated those with chronic Lyme. The researchers plan to repeat the study with additional patients and apply this same new technology to other difficult-to-diagnose diseases (note that these same technologies are currently in use in some ME/CFS studies funded by Open Medicine Foundation).

You can read more about this Lyme disease research in this press release.

Chronic Illness Vlog: Treatments, A Better Week & Crashed Again!

My health continues to be very up and down--well, mostly down. It's a long, complicated story, and I want to write a full update for the blog, but I haven't had the energy for that. A change in medication caused a massive shift in hormone levels for me, and I think I am still adjusting to that and waiting for my body to stabilize.

In the meantime, I have another weekly vlog that tells another piece of the story. As I edited this video yesterday, I realized that I actually had a pretty good week Tuesday through Friday, but then--again--I crashed badly on the weekend. This time, it was even more severe, and I was mostly bedridden/couchbound for four days. Today, I am sitting up partially again in the recliner, so that is a huge step forward, but I still have symptoms, very low energy, and am feeling very fragile. I'm trying to be very, very careful and take it easy and extremely slow.

So, here's my weekly chronic illness vlog, where you can see for yourself a very honest view of my life last week. You can watch it on YouTube at this link or below:

I would love to hear from YOU!

How was your week and how are you doing so far this week?

What helps you get through the rough times?

Chronic Illness Vlog: Crashed! Why?

My weekly vlog about life with chronic illness (especially ME/CFS, orthostatic intolerance, and Lyme disease) from last week is available now. I had a pretty bad crash week, with most of my days spent in bed, on the couch, and in my recliner. As usual, my analytic brain was hard at work, trying to figure out WHY I crashed, so the video includes my theories and what I might do about it. Plus a few things that made me smile and brightened my otherwise difficult week.

You can watch the video directly on YouTube or I will include it here, too.

The good news is that the past two days have been a bit better for me. I am still struggling with a bit of achiness, but I was able to leave the house yesterday (three times!) and get some writing work done the past two days (I'm starting some new freelance work for Open Medicine Foundation that I'm excited about--more on that later).

So, fingers crossed that this week continues to be better than last. If nothing else, our days of rain and storms should end tonight, and clear skies always help me!

How was YOUR week?

What cheers you up & helps you feel better when you're crashed?

Interview on ME/CFS, OI, and long-COVID on Podcast

A couple of weeks ago, I had the great pleasure of being interviewed by Dr. Tony of the Crooked Spine podcast. He was fascinated by my family's story and asked me all about ME/CFS (myalgic encephalomyelitis, chronic fatigue syndrome), orthostatic intolerance (including POTS), and Lyme disease and other tick infections. We also talked about the challenges of living with any kind of chronic illness and ways to cope.

The video is now available on YouTube. You can watch it here on my channel at the link. And I will also imbed the video below so you can watch it right here, if you prefer:

This was a great opportunity to help get the word out about ME/CFS and long-COVID, as well as the OI that accompanies it and the additional challenge of tick infections.

I hope you enjoy it. You can leave comments on YouTube below the video or here on the blog. 

Let me know what you think and if you have any questions.

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.

 

 

 

 

It's My 20-Year Illiversary

On March 2, 2002, I woke up feeling awful, exhausted and aching all over, with the worst sore throat I'd ever had, and my life forever split into Before and After. Today, it's been a full 20 years of living in the After and adjusting to life with chronic illness. A lot has happened since then, with lots of ups and downs, though thanks to many effective treatments, I am in much better shape and able to do more now than I was 15-20 years ago. You can read a more story-like summary of our years of illness at the Our Story tab, but here's a detailed summary.

March 2, 2002

Abrupt onset (like 75-80% of patients) of ME/CFS, with flu-like symptoms. Unsure what the initial trigger was, but it could have been my allergy shots, since I had just recently reached the maintenance level. Symptoms came and went in seemingly random patterns (it took a long time to finally see the exertion-crash pattern). 

March 2003

Diagnosis! After a year of getting hundreds of lab tests and seeing dozens of doctors (all of whom said, "I have no idea what's wrong with you"), I went to see our new primary care physician for the first time. She was close to our house, was a woman, and was accepting new patients; otherwise, we chose her somewhat randomly! I showed her my 3-ring binder full of lab results and symptom graphs and pointed out the mysterious ups and downs. 

She said, "I'm pretty sure you have Chronic Fatigue Syndrome. I have a few other patients with it. Would you like to try some treatments?" That sounded like something made-up to me, so I did a little more research, found a CDC website about it, and read a couple of books where I recognized my "mystery illness" for the first time in their pages. 

I went back to her, and she started trying treatments, telling me the first priority was to correct my sleep dysfunction because good quality sleep would improve everything. She was right, of course!

Yes, I know how incredibly lucky I was to find her!!

 

July 2004

While on vacation, my husband and our younger son both got a virus, including a cough that lasted for 6 weeks (with current knowledge, possibly a SARS-type virus?). After that, both of our sons started showing signs of ME/CFS (though we didn't want to believe it) - fatigue, recurring sore throats, and worst of all, crashes after exercise. The older son (who hadn't caught the virus but had been exposed) had more severe symptoms.

 

December 2004

Our older son and I went to western NY state (near my hometown of Rochester) to see Dr. David Bell, a renowned ME/CFS specialist (now retired) and the top pediatric ME/CFS expert in the world at the time. He officially diagnosed our son with ME/CFS (then known often as CFIDS) and confirmed my diagnosis.

Dr. Bell also did an OI standing test of my son in the office. I had read about Orthostatic Intolerance (OI) but didn't think we had it because we never felt dizzy or fainted. Boy, was I wrong! I was stunned by how sick my son got from less than 10 minutes of standing in the doctor's office, as his heart rate went sky-high and his blood pressure plummeted. Dr. Bell explained that I would react the same way but might be too sick to get the two of us home that night!

May 2005

Dr. Bell had introduced us to Dr. Peter Rowe at Johns Hopkins, who specialized in OI, especially in kids with ME/CFS. He couldn't take on any new patients (even back then!) but talked to me by phone and e-mail and spent two hours on the phone with our pediatrician, teaching her all about OI and how to treat it. Our son began taking Florinef (fludrocortisone), which helps the body hold onto more fluids and salt to overcome the low blood volume in ME/CFS. Once he got up to an effective dose (0.2 mg for him at that time), it was like someone had flipped a switch, and he came back to life! By spring 2006, he was back at school full-time, had resumed extracurriculars, like band, and was playing soccer again.

 

2005-2007

Both my son and I continued seeing our primary care doctors, consulting with Dr. Bell and Dr. Rowe, and started seeing Dr. Susan Levine, ME/CFS specialist in NYC. Through all of those doctors, we both corrected sleep dysfunction, treated immune dysfunction and underlying infections, and treated OI (low-dose beta blockers helped a lot). Both of us improved significantly.

 

Spring 2007

Our older son got Lyme disease for the second time. The first time, before ME/CFS, he had been treated and had fully recovered, with no symptoms for over a year, until ME/CFS hit. This time, standard treatment (a month of antibiotics) helped with some new, acute symptoms but his worsened fatigue and other symptoms continued.

That spring, we finally got our younger son officially diagnosed. His symptoms were always milder, and we'd talked to Dr. Bell about him, but since he was only 6 when the boys first got ME/CFS and was still able to function semi-normally, he advised us to wait to diagnose him, saying sometimes younger kids with mild symptoms recover. But by March of 3rd grade, he had missed 35 days of school already, and his principal called us to find out why. With everything she'd learned from Dr. Bell and Dr. Rowe, our own pediatrician ran all the tests to rule out other things and diagnosed him. She also immediately began treating him with Florinef, and he was soon back to living a pretty normal life, other than crashing when exposed to a virus or after extreme exertion. He stayed on Florinef and generally missed 20-30 days of school a year (and had accommodations plans, like his brother), until age 16, when he did indeed recover fully.

August 2008

Sudden onset of knee pain and nausea told me that I, too, had Lyme disease, though my screening tests kept coming back negative. After much arguing (and some tears on my part), my primary care doctor agreed to try a course of doxycycline. My symptoms immediately cleared up, back to my "normal" ME/CFS baseline, and she was convinced! After a few months of treatment, when the symptoms still came back after stopping antibiotics, she said we were beyond her expertise, and we found a Lyme specialist in a neighboring state, who tested me for co-infections (none) and kept treating my Lyme with a varied treatment approach that worked well.

2007-2009

Despite the treatments that had initially helped, our son got gradually worse over a three-year period. He had some odd symptoms his pediatrician couldn't identify, but with the help of a parents' group online, I finally realized his weird rashes were from bartonella, another tick infection. I took him to my Lyme specialist, who discovered he still had Lyme, plus bartonella and babesia, all probably from that initial 2007 bite. More on tick infections, which are common among those with ME/CFS and fibro).

2008-2019

My Lyme symptoms kept returning, and I kept treating for a period of time then stopping, in a never-ending cycle! In 2019, I started seeing the new Lyme specialist our son was seeing (we loved our old one, but this one was closer to home). She suggested some new approaches that helped.

May 2019-present

After finishing college (an arduous process, even with accommodations), our son hit bottom medically. He was very ill, almost homebound and had some new symptoms, including anxiety and severe GI symptoms. He had lost 40 pounds and was vomiting every day and nauseous all the time. That's when he started seeing the new Lyme specialist, along with her partner, a functional medicine specialist. Between the two of them (and lots of testing and new treatments), our son has gradually improved and is doing quite well now. He was able to work 30 hours a week last summer and is now looking for a full-time job, which feels like a miracle!

March 2020-November 2021

Yes, that was the start of the pandemic, but for me, it was also the start of a 22-month-long relapse with no obvious cause. I suspected my Lyme again and went back to the new Lyme specialist, who helped me to once again get my Lyme under control with some new treatments. She also found and treated hypothyroidism. The Lyme flaring up and the worsened immune dysfunction of ME/CFS triggered old viruses to reactivate again, so I went back on antivirals. And, kind of by accident, I discovered that a higher dose of inosine (a super-cheap and over-the-counter immune modulator) on my high-dose weeks also helped. I think all of these factors helped, and by December 2021, I was back to my previous "normal" ME/CFS baseline (keeping up all those treatments).

January 2022-present

Finally feeling pretty good again, I got COVID on January 5 from my father-in-law's nursing home! I am mostly recovered, though energy and stamina are still lower than normal for me. I am slowly getting back (I hope) to my baseline.

Whew, that was supposed to be a quick summary! Nothing with these illnesses is simple, of course. But, that's our story, so far.

How long have you been ill?

Which diagnoses do you have?

What treatments have most helped?

Let me know in the comments below.

Weekly Inspiration: A Day in My Life

I finally finished editing and uploaded my own Day in the Life with Chronic Illness video, showing you a glimpse into my life with ME/CFS, Lyme disease, and OI (POTS and NMH).

As I mentioned in a recent Weekly Inspiration post, I enjoy watching chronic illness "slice of life" videos on YouTube. These are the videos that provide a glimpse into someone else's life with chronic illness. Some are Day in the Life videos, capturing a single day, and others, like the Chronically Jenni Weekly Vlogs I highlighted in that earlier post, cover more time.

What I find interesting and inspirational about these kinds of videos is their honesty and authenticity. As opposed to what you normally find online and on social media, these chronic illness videos almost always show the unvarnished truth, in this case about what life with chronic illness is like: the good, the bad, and the ugly. I find it comforting to see someone else do something small, like meet a friend for lunch or go to a store, and then have to lie on the couch afterward--I feel bad for them, but it means I'm not alone! There's comfort in community, in knowing that others face similar challenges as you do ... and are managing their own version of life and happiness.

So, for all of these reasons, I recorded my own Day in the Life with Chronic Illness video. You can watch it on YouTube at the link (and be sure to "Like" and leave a comment, if you want), and check out the Notes below the video on YouTube. And I will also embed the video here:

As I explain in the introduction to this video, I recorded it on a day when my husband was out of town (a rarity these days!) but otherwise, it was a pretty typical day for me. I wasn't crashed, and I was able to manage small bits of activity, with periods of rest in between. I tried to include everything in my daily routine, to give you a glimpse into my life with ME/CFS, Lyme, and OI (POTS and NMH) and the many kinds of self-care that help me. Since I enjoy the honesty and authenticity of others' videos, I tried to give you the same thing here ( I even started recording when I first woke up!).

Finally, as I mention in the video and in the notes below it, I am only able to manage the level of activity and functioning shown in the video because of the treatments I have found over the past 19 years that have helped both me and my son to feel better, tolerate more exertion, normalize our immune systems, prevent and lessen crashes (flare-ups), and overall improve our quality of life. For more information on Effective Treatments for ME/CFS (most of which are readily available worldwide and inexpensive), click on that link to the page here on my blog and/or check out the Notes below the video on YouTube.

 

And I would love to hear about YOUR life! What is similar or different than mine? What things help you to manage life with chronic illness?

Tell me about your own daily life in the comments below.