Are There Warning Signs Before an "Abrupt" Onset of ME/CFS?

Like many people with ME/CFS, I can tell you the exact day that my illness began: March 1, 2002. Multiple studies have indicated that 75-80% of those with ME/CFS have an abrupt onset like that, often triggered by an infection (over a dozen infectious triggers have been identified) or sometimes by a vaccine (in someone genetically predisposed), trauma like a car accident, or even chemotherapy. But are there earlier signs of impending immune dysfunction and illness, even in obviously abrupt onsets like mine that forever divide our lives into Before and After?  

BEFORE: Hiking up a mountain while carrying our son!

 

My Abrupt Onset of ME/CFS:

Before March 1, 2002, I lived a normal, active life. We had two young sons who kept us busy, and in 2000, I had left my career temporarily (or so I thought!) just to slow our lives down a bit and so I could spend more time with our boys. My life at that time without outside work was pretty low-stress, and I was very content. March 1 was a typically busy Saturday: I did an exercise class at the Y while our boys took their swimming classes, we bought groceries and came home to clean the house, and that evening, we had friends over who had 3 kids, and I made dinner and enjoyed their company. By bedtime, though, something felt very wrong. I had a terrible sore throat that I described as "like I swallowed barbed wire." I woke up the next morning badly crashed, in the world of ME/CFS though I wouldn't know that for another year. My life from then on was never "normal" again.

 

Were There Earlier Signs of Dysfunction? 

When we saw our first ME/CFS specialist, the great (now retired) Dr. David Bell, he mentioned to me that most people like me who could point to a specific start date of ME/CFS actually had earlier signs and symptoms. At the time, you don't realize what they signify, but in hindsight, many people can look back and see some patterns that would prophecy ME/CFS, if we knew what to look for. He asked me to think back and consider whether I had any early signs.

When prompted, I realized that I could think of two instances where my immune system was clearly over-reacting, my first encounters with weird reactions to normal things! 

In the 9th month of my second pregnancy, in 1997, I got a horrible rash all over my pregnant belly that itched like crazy. My OB/GYN eventually had to give me prednisone ... and it took two rounds of steroids to finally clear it up. She explained to me that it was an autoimmune reaction, my body reacting to the baby as if it were a foreign body it needed to fight and that, while it was not unheard of, it was not a common reaction.

About two years later, in 2000, I got some poison ivy on my forearms while working in our yard. It was isolated to my lower arms and wasn't an especially bad case to begin with, but it wouldn't go away. I spent weeks (very hot summer weeks) soaking my arms in ice baths and covering them with cortisone cream and calamine lotion, to no avail. Finally, once again, two rounds of prednisone were required before the rash subsided.

Later, when I thought about it some more, I also remembered some "weird viruses" I used to get after college, when I was working in my first job, in New Orleans, starting in 1987. About 2-3 times a year, I would suddenly get very sick, but my only symptoms were the most severe sore throat I'd ever felt and complete exhaustion so extreme I couldn't do anything at all. Sound familiar? The first time it happened, I went right to the doctor for a strep test, but it was negative. I stayed in bed and did nothing but sleep and eat for 3-5 days, and then I felt fine again. This happened several times a year and was never accompanied by congestion, cough, fever, or other typical viral symptoms. It often occurred after a very busy period, like back-to-back business trips. I assumed it was some sort of virus, but the exact same pattern repeated over and over.

Just this weekend, I was looking back at an old journal from 2001, just for fun. The first few entries in January were pretty normal, describing our active daily lives with our young sons. But this one made me gasp out loud:

"Fri, Jan. 5 - 

Tired, Exhausted. Wiped out. Achy. Struggled to find some energy all day. Had fun in the snow with the boys but now even more tired."

What?? That sounds like ME/CFS, doesn't it? Healthy people don't get flu-like aches without the flu, even if they overdo. I looked back to the day before:

"Thur, Jan. 4 - 

Woke up sore and stiff [the previous day was a "normal" one with no unusual activity] and Ken says I was talking in my sleep. I just felt so tired all day - whew. "

Then I wrote this on the following Sunday:

"Sun, Jan. 7 - 

I took a step class for the first time yesterday and really overdid it! I had a lot of trouble sleeping last night with lots of bizarre dreams. I felt horrible this morning and ended up spending most of the morning tossing and turning in bed."

Exercise intolerance, anyone?

The following weeks seem fairly normal. I do often write that I'm tired, but I was the mom of two active boys also trying to take care of our house and launch a writing career. But I do remember my husband commenting around that time that it seemed like I was always saying I was tired lately. 

In hindsight, it seems like all of this was leading up to that day on March 1, 2002, when a switch was flipped, and my immune system never returned to normal, as it had in the past. I've always thought that the trigger for my ME/CFS was allergy shots (I had just gotten up to my maintenance dose that week), but looking back, it seems like my body was primed for that trigger to finally bring on ME/CFS permanently.

How about you?

 

When you look back at the time before your own "abrupt onset," were there early signs? 

Let me know in the comments below.

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

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.

 

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

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

In the video, I answer these questions:

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

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

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

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

 

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

 

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

  

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

 

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

Recent Research on Orthostatic Intolerance (OI) in ME/CFS, Long-COVID & EDS

My browser has about 40 open tabs right now (!), and many of them are recent news or research on ME/CFS, long-COVID, and related conditions that I want to share with you. If only there were more hours in a day (or I didn't have to waste two of them napping every day)! So, here, I've compiled some fascinating recent (in the past few years) research into Orthostatic Intolerance in these conditions.

Orthostatic Intolerance or OI is an integral part of ME/CFS--over 97% of ME/CFS patients have some form of OI (and many of those with long-COVID, EDS, fibro, MS, and Lyme, too). So, if you have ME/CFS, then you do have OI, too, though you may not be aware of it. OI is an umbrella term encompassing several conditions where the body cannot maintain a steady blood pressure and/or heart rate when upright (standing or even sitting up). The two most common types of OI in ME/CFS are NMH, where the BP drops when you are upright, and POTS, where the HR goes up when you are upright. Rarer forms of OI--like where the BP rises when upright or BP and HR jump all over the place--also exist. The good news is that OI is fairly easy to treat & often brings dramatic improvement! It's what got my two sons back to school full-time when they were young and what allows my son and I to live fairly active lives now (he starts a full-time job next month!).

This detailed blog post about OI includes more information on OI, including all the basics of diagnosis and treatment, plus our own successful experiences treating it. In addition, I wrote a 2-part article for the ProHealth website on OI that is perfect for sharing with doctors because it is short and to the point and includes scientific references at the end, in case your doctor wants to look into it further. Part 1 is Diagnosing OI in ME/CFS and Part 2 is Treating OI in ME/CFS (both are relevant to all conditions mentioned above that include OI). 

 

With that basic information in mind, here are some fascinating studies that bring further light to the severe impact that OI can have on us patients. Many of these studies deal with finding impaired blood flow to the brain, causing severe symptoms, during even mild orthostatic (upright) challenges in ME/CFS patients. Note that any research on OI in ME/CFS will generally also be applicable to those with long-COVID, Ehlers-Danlos Syndrome (EDS), and often fibro and Lyme also.

• An interview with Dr. Peter Rowe, MD, Johns Hopkins (renowned OI in ME/CFS expert) about OI, brain blood flow, and venous congestion in ME/CFS. In this video, he discusses some of the studies listed below.
• From 3 months ago, a video presentation from Dr. Rowe on Updates on Orthostatic Intolerance in EDS. 
• Study (2023): Worsening Symptoms is Associated with Larger Cerebral Blood Flow Abnormalities During Tilt Table Testing in ME/CFS. This clearly shows that OI = less blood flow to the brain = worse symptoms, showing what a serious impact OI has on ME/CFS patients.
• Study (2020): Cerebral Blood Flow is Reduced in Severe ME/CFS Patients During Mild Orthostatic Stress Testing. Typical tilt table testing involves starting from a horizontal position and continuing until the patient is at a 70% standing position for at least 30 minutes. Many more severe patients can't tolerate that kind of test, and even moderate patients will crash badly after it. This study clearly showed that in a group of severe ME/CFS patients, a short test of only 20 minutes, going up to only a 20% position (the equivalent of sitting up in bed), provoked the same reduction in blood flow to the brain.
• Study (2020). Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe ME/CFS Patients. In a study of 100 severe ME/CFS patients (37 of whom also had fibro), there was a 24.5% reduction in cerebral blood flow just from sitting for an hour, even when heart rate and blood pressure didn't show significant changes. This shows that merely sitting can provoke a severe reaction and symptoms and that OI could potentially be diagnosed from a sitting test in severe patients who can't tolerate a standing test or full tilt table test. It also shows that severe effects are caused from being upright (OI), even if BP and HR don't show it.
  
• Paper in Science (2021). Cerebral Blood Flow Remains Reduced After Tilt Table Testing in ME/CFS Patients. This showed that the effects of being upright remain even after the patient is sitting or lying down--something that every patient who crashes after having to stand for a period of time knows all too well!

I find all of these studies absolutely fascinating because:

• OI can be difficult to diagnose, as I described in Challenges in Diagnosing OI, so measuring cerebral blood flow (blood flow to the brain) provides an alternative testing method that may be more accurate.
• These tests--showing reduced blood flow to the brain--show very clearly the severe impact that OI (and being upright) can have on ME/CFS patients, in obvious, quantifiable terms that doctors can understand.
• These studies show how even minimal orthostatic stress--sitting or even lying down at a 20-degree upright angle--can provoke severe symptoms that linger. This is something patients know instinctively, but it's nice to have proof to show doctors!

Again, the good news is that Orthostatic Intolerance is very treatable, and treating OI effectively can provide significant improvement in all symptoms! Finding exactly the right combination of OI treatments for each person can be tricky. It requires patience and persistence! For instance, there are almost 40 different beta blockers alone, plus many other treatment options, and they all work differently for each person. But it is well worth the effort to keep trying until you find what works for you, as my son and I have.

Have you tried treatments for OI yet? What has worked for you?

Please leave a comment below.

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

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

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

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

 

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

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

Let me know in the comments below.

You can also connect with me on Facebook and Twitter.

New Research & Resources on ME/CFS and Long-COVID

I currently have 18 tabs open on my laptop browser, and most of them are new research on ME/CFS, long-COVID, Lyme disease, and related topics that I wanted to save to tell you about! So, I think it's time to pull some of this information together for you and clean up my browser a bit. 

And that's the really good news: there is so much exciting research going on right now, being reported each week! It's hard to keep up with it all, so let me help you with some quick recaps, with links to more information:

Helpful Resources for Patients (and Doctors, too):

Last week, I wrote a whole post about Resources for Educating Doctors about ME/CFS and Long-COVID, so be sure to take a look at that, too. Here are a few additional resources that I've found helpful as a patient:

• Heart Rate Variability from the Bateman Horne Center (led by Dr. Lucinda Bateman, one of the top ME/CFS specialists in the world) - this simple one-page information sheet explains what Heart Rate Variability (HRV) is and how it can help you track how well (or poorly) your autonomic nervous system is functioning. This is another easy way track how you are doing, with hard data, in addition to heart rate and steps taken (see my video and blog posts on Measuring Limits with Heart Rate Monitor and Step Counter). I'd heard that HRV was important but didn't understand it - now I do! I have set up my Apple Watch to track HRV daily, as well as heart rate and steps taken - just another tool to measure when I need to rest and when I am doing OK. Share this with your medical professionals, too!
• Physiology of Post-Exertional Symptom Exacerbation - this video from Dr. Todd Davenport explains the latest scientific findings about why exertion makes us worse and what is going on in the body of someone with ME/CFS or long-COVID when we are active that causes the characteristic crash. Dr. Davenport is one of the top experts in this field, and I had the pleasure of "meeting" him when we were both participants in a set of informative videos about using heart rate monitors in ME/CFS (Part 1 and Part 2), intended for both patients and physical therapists/physios.
  

 

New Research Advances and Updates

• "Blood Tests for Chronic Fatigue Syndrome," an article in Drug Discovery News. This article, which is written in clear layperson language, describes the need for biomarkers and diagnostic testing for ME/CFS, and three of the best possibilities from recent research. You can't go into your local lab to get any of these tests yet, but the progress and the focus of these researchers is encouraging. This is also a great article to share with any doubting doctor (along with the Resources for Education Doctors about ME/CFS and Long-COVID).
• "Circulating MiRNAs Expression in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome" - directly related to the article above, microRNAs are one possibility for future biomarkers/tests to diagnose ME/CFS. In this case, the focus was on how miRNA gene expression specifically for activated HHV-6 infections (common in ME/CFS) could differentiate ME/CFS patients and healthy controls. This short abstract describes the findings.
• "Nicotine applied by transdermal patch induced HSV-1 activation and occular shedding in latently infected rabbits" - I wouldn't normally call attention to an animal study but this one was disturbing, eye-opening, and definitely relevant to ME/CFS patients. We are known to have reactivated herpes-family viruses in our bloodstreams; the specific kind of immune dysfunction of ME/CFS and long-COVID causes these old (latent) viruses to reactivate. There has been talk among long-COVID patients on Twitter of using nicotine as a treatment. Given this evidence that it could cause further activation of herpes-family viruses, I would pass on that one (not to mention how addictive it is).
  
• "Convergence: How Gut, Immune, and Metabolic Issues May Be Producing PEM in ME/CFS" - this excellent article, written for patients, is by Cort Johnson, a patient himself and long-time expert in summarizing research for the patient community. It's his layperson summary of a recent research study, "Suppressed immune and metabolic responses to intestinal damage-associated microbial translocation in myalgic encephalomyelitis/chronic fatigue syndrome" (see why we need to Cort to translate this for us?). As Cort explains, the ground-breaking aspect of this study was how it brought together immune dysfunction, gut issues, and metabolic dysfunction and connected them all to the hallmark exercise intolerance of ME/CFS (and long-COVID, too). See the right-hand column for a shorter, simpler summary under "The Gist." This is exciting research! I plan to share this with our functional medicine specialist.
• "The Paxlovid Possibility: Antiviral Drug Found Protective Against Long-COVID" - another excellent article from Cort Johnson summarizes a recent study from the Veteran's Administration--of 9000 patients!--showing that using Paxlovid early on in COVID-19 infection reduced incidence of long-COVID by 25%. Cort explains the study's findings and what it might mean for long-COVID and ME/CFS in the future. Again, the sidebar labelled "The Gist" provides a shorter bullet-point summary.

That is some really exciting research on ME/CFS and long-COVID, covering some of the biggest aspects of the diseases! The future is looking brighter (and my browser is cleaned up, too). I hope these brief summaries helped to update you on what is going on in the world of research!

Resources for Educating Doctors About ME/CFS and Long-COVID

There are several new publications, in addition to some helpful older ones, available to help patients educate medical professionals about ME/CFS and long-COVID and especially the exertion intolerance that defines these conditions. These documents, guides, and videos should absolutely be shared with your primary care doctor or GP, but they are also helpful for other medical professionals. You can share these with any specialists you see, like neurologists, cardiologists, or rheumatologists. They are also helpful for doctors you see for routine check-ups, like OB/GYN, dermatologist, or even your dentist. And any medical professional who recommends you exercise or is involved with any kind of physical therapy with ME/CFS or long-COVID patients can benefit from knowing about exertion intolerance or Post-Exertional Malaise (PEM). All of these people in the medical profession need to understand how their own specialty fits into the bigger picture of ME/CFS and long-COVID. 

Here are some of the best resources available for sharing with medical professionals (available to download, view, or print at the links provided):

ME Factsheet (NEW and available in multiple languages) - this new document from the World ME Alliance provides a general overview of ME: what it is, symptoms, impact. It emphasizes the exertion intolerance and danger of pushing patients to be active and mentions the link with long-COVID.

Pacing and Management Guide for ME/CFS and Long-COVID (for all patients) - from #MEAction - what are ME/CFS and long-COVID with a detailed explanation of post-exertional malaise (PEM) and how it limits patients, why exercise and Graded Exercise Therapy (GET) are harmful, tips on pacing, and resources.

Pacing and Management Guide for Pediatric ME/CFS and Long-COVID - same sort of document from #MEAction, with a focus on PEM and pacing, but for kids and teens. Excellent for sharing with pediatricians, school administrators, and teachers.

Post-Exertional Malaise (PEM) Video Training Series - developed for doctors and other medical professionals by Dr. Lucinda Bateman, one of the top ME/CFS clinicians in the world, this video series explains not only what PEM is and how it affects patients but also the science behind it. It's a series of seven very short videos (2-7 minutes each). Scroll to the bottom to watch the entire series in under 30 minutes.

Treatment Harms to Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  - published scientific paper that summarizes all the research proving that exercise/exertion is harmful to patients with ME/CFS and long-COVID - perfect for the medical professional who still insists you should exercise, in spite of you explaining about exercise intolerance. Share this far and wide!

Testing Recommendations for Suspected ME/CFS - from the U.S. ME/CFS Clinician Coalition, the cooperative group including all of the top ME/CFS specialists in the U.S.. They have loads of resources for medical professionals on their website - this document focuses on diagnosis and is perfect for your primary care doctor, GP, or any other medical professional involved in diagnosing you.

Treatment Recommendations for ME/CFS - also from the U.S. ME/CFS Clinician Coalition, this document outlines real medical treatments - for sleep dysfunction, orthostatic intolerance, immune dysfunction, and other aspects of the disease, based on their combined decades of experience treating hundreds of thousands of patients. It is perfect for your primary care doctor, GP, or any other medical professional involved in treating you.

Diagnostic Codes for ME/CFS and Long-COVID - as of last October 2022, ME/CFS and Long-COVID now have their very own ICD codes, the numbers doctors must include for every patient they see. The summary is at that link to print and share with your doctor. They should be using G93.32 for ME/CFS and G93.3 or U09.9 for long-COVID.

I am very fortunate to have an outstanding primary care doctor who understands ME/CFS, was the first one to accurately diagnose me, back in 2003, and has been treating various aspects of the disease in me and other patients for over 20 years. But I plan to print that new ME Factsheet to bring to my new OB/GYN next week and to give to my primary care doctor to ask her to share it with the other doctors, nurses, and physician assistants in her office.

If we all help to share this information, hopefully things will gradually change as more medical professionals understand what ME/CFS really is and how to help, not harm, patients.

 

New Orthostatic Intolerance (OI) Video

I've been absent/silent lately here! If you follow me on social media, you know I'm still struggling to recover from COVID, which just made all my ME/CFS symptoms much worse (as you'd expect). Last week was particularly bad, and I spent several days in bed.

But, in between, on the days when I felt a little better, I managed to record, edit, and upload a new video: Orthostatic Intolerance in ME/CFS, long COVID, fibro, Lyme & EDS. You can click the link to watch on YouTube or watch below:

This video is based on my most popular blog post in over 16 years of writing this blog! Year after year, this post that I wrote in 2010 shows up as the one with the most visits. 

Orthostatic Intolerance (OI) is a hot topic on my blog for good reason. It is an integral part of ME/CFS (one study showed that over 97% of us have some form of it), and it is treatable! It can take a bit of trial and error (and patience), but treating OI often brings dramatic results, decreasing all symptoms and improving quality of life. It's been life-changing for my sons and I over the years--got my two sons back to school full-time when they were young and allows me to be active without crashing (usually, without COVID messing things up!).

I also wrote a 2-part article on OI for the ProHealth website. All of my articles (and many others) were taken down when they revamped their website last year, but making the video gave me the motivation to scan my articles and get them back online last week. This two-part series covers:

Part 1: Diagnosing Orthostatic Intolerance

Part 2: Treating Orthostatic Intolerance

These articles are especially good for sharing with your doctor(s), as they are brief, cover the most important points, and include scientific references at the end, in case your doctor wants to look up more information.

Check out the video or read the blog post or articles, if you prefer. If you are sick of being sick and struggling through each day, treating OI is one of the simplest and most effective things you can do to improve your life!

And please let me know if you have any questions, in the comments here or in the comments below the video or on Twitter or my Facebook page.

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: Our Chronic Illness Story

Things have been quiet here at the blog this week because we moved my 96-year-old father-in-law to Assisted Living this week, and it was kind of a rough transition for him. He needs the help but doesn't always realize it due to dementia. Moving day, Wednesday was a very long day for all of us, and then I spent three hours with him on Thursday, helping him get settled and trying to help the staff understand his needs. 

As for me, I was quite pleased that I managed all of that pretty well! Of course, I was wiped out and achy by Wednesday night (so was my husband!), but I bounced back quickly and felt good on Thursday, which felt pretty miraculous. This was the first week that I really felt back to my "normal" baseline, after an 18-month-long relapse. I finally remembered to take a break from my inosine, an immune modulator. I normally take a break every 2-3 months, and it had been 6 months - oops! Immune modulators only keep working effectively if you take a break once in a while because your immune system gets used to them. So, after two weeks off, I started back on inosine Monday, and like magic, my energy returned, my stamina bounced back, and I felt better than I had in months! Inosine has helped both my son and I tremendously, and you can read more about inosine (and the complex dosing) here.

So, things were going well, and then ... a really nasty stomach virus hit me on Friday! It's rare for me to catch any kind of a virus, and this one hit me really hard. Today, on Sunday, I am finally seeing some improvement. My stomach is settling down, I held down a little breakfast, and my fever broke overnight. But I am still very weak and wiped out today (typing this lying down!).

So, I thought I'd share a video I added to my YouTube channel this week, Our Chronic Illness Story. I thought it might be helpful for those who are newer to my blog or who only know me through YouTube to hear about our family's journey with chronic illnesses, including ME/CFS, Lyme, and other tick infections. Here, I tell our story from the beginning, The Before, to the present, including the ups and downs and our successes and victories. You can watch it here or click the link to watch on YouTube:

Please share your story in the comments or let me know if you have any questions. Time for me to put the laptop down and rest!

Throwback Thursday: 13 Years Ago - Lyme Disease, Doctors & Crashes

I thought I'd start a new feature, Throwback Thursday, to take a look back at what I was writing about here on the blog in the past. I've written the blog for more than 14 years now, so that's a LOT of old blog posts that rarely get seen anymore! Looking for an older post today, I also realized that many of the same issues from way back then are still very relevant today and that maybe we can all learn something from occasionally looking back!

So, for today, I chose two posts from this week in August 2008, 13 years ago. These two posts are on the same topic, two parts of the same story, about when I first got Lyme disease.

The first post, from August 13, 2008, is A House of Cards. I use a house of cards analogy to describe how I felt like my life had suddenly crumpled and left me exhausted and in a panic. In this post, I mention how bad I'd been feeling lately, my sudden-onset of knee pain, and a very difficult and painful fight I had with my doctor, about whether or not I now had Lyme disease. I still vividly remember that day because it was so upsetting to me. You can read all about it in that post.

One week later, on August 21, 2008, I wrote Lyme Disease and Allergies, which describes how treating Lyme (which my doctor finally agreed to after that awful fight) finally relieved my symptoms, giving me a miraculous recovery just in time for a camping vacation with my extended family (i.e. lots of energy required!).

August 2008: I was able to enjoy vacation with my family!

Wow, reliving that period 13 years later was interesting and enlightening! And there were some very important lessons in that one-week period so long ago:

Believe in Yourself & Advocate for Yourself - That fight with my doctor when my Lyme tests came back negative but I was certain I had it was a rough one; I was in tears and it still upsets me all these years later. But standing up for myself was the right thing to do. It turned out that I was right, that I did have Lyme disease (and, in fact, am still fighting it 13 years later), and if it had gone untreated for longer, I could have suffered from permanent neurological damage. It can be really hard to advocate for yourself when you have no energy and cognitive function is impaired, so you might need a friend or family member to help you with research and talking to your doctor(s) to represent your rights, needs, and interests. For background as to how I knew I had Lyme and why the lab tests were wrong, check out another post, Why Everyone with ME/CFS or Fibro Should Be Evaluated for Tick Infections. If I hadn't known all this and advocated for myself back then, I would be in much worse shape today, perhaps even bedridden. So, listen to your body, believe in yourself and what you are feeling, and speak up to ask for what you need (and enlist help when needed).

Listen To Your Body! Ah, yes, this is a lesson I keep having to re-learn, even 13 years later! I mention it in both of these older posts, and I just this week recorded a new video about this, You're Right Where You Need To Be. Paying attention to how we feel and resting before we crash is probably #1 in importance when it comes to managing these chronic illnesses, but it is easy to forget in the heat of the moment, when you think you must get something done or don't want to miss out on something. So, a reminder--even from 13 years ago!--is good now and then.

My Lyme Journey It's very interesting to look back at how it all started, when I first added Lyme disease to my diagnoses in 2008, because it's been a long journey with lots of ups and downs. Several times over the next 12 years, I thought I'd finally gotten the Lyme under control and fully treated (spoiler: I was wrong!). Finally, in January this year, I began seeing my son's Lyme specialist and started on some new treatments that have been very effective. I describe all that in my recent post News from Our House: Treatment Progress and More.

Where were YOU 13 years ago?

What lessons have you learned in the past that you seem to have to keep re-learning?

New ME/CFS Testing & Treatment Guidelines

Great news! The U.S. ME/CFS Clinician Coalition has published two more excellent documents to provide guidance to doctors diagnosing and treating ME/CFS patients. Here are some details and links to both the new and older documents:

Who Are They?

The U.S. ME/CFS Clinician Coalition is a group of 21 top experts in myalgic encephalomyelitis and chronic fatigue syndrome in the U.S. Individually, these doctors have treated thousands of patients with ME/CFS using the best and latest research (and often participating in research and running studies themselves) for dozens of years. Together, they were working collectively to exchange information and stay up-to-date even before this group was officially formed in 2018. Some of them served on the committee to develop new diagnostic criteria. You can read more about the group at their website.

Some, but not all, of the doctors in the coalition still see patients. They are included in my page on Finding a Doctor, which also includes lists of top ME/CFS experts around the world, second-tier doctors who treat certain aspects of ME/CFS, links to doctor databases, and tips on finding a local primary care doctor who can help you.

What Are the New Guidelines Just Published?

The Clinician Coalition just this week released two new documents to help doctors trying to diagnose and treat ME/CFS patients. These are documents that YOU can share with your own doctor:

Testing Recommendations for Suspected ME/CFS - this comprehensive list not only helps doctors to diagnose ME/CFS and rule out other possible causes, but it also provides tests to help doctors better characterize this particular patient's ME/CFS, like which kinds of infections are present and whether they have Orthostatic Intolerance (OI).

ME/CFS Treatment Recommendations - this 9-page document includes a fairly complete list, organized by aspects of the disease, of medications, supplements, and other treatment approaches. They've included proven treatments that have helped many patients, as well as options for the patients who might not respond typically. Note that while the document does mention pacing toward the end, it does NOT mention Graded Exercise Therapy or Cognitive Behavorial Therapy!

What Else Is Available from the Clinician Coalition?

So much!! Their website has a treasure trove of information for patients and doctors. Check out their Resources page for reports and documents from them and from other sources, including more testing and treatment advice, latest reports on ME/CFS, more on common aspects/comorbidities like Orthostatic Intolerance and Ehlers-Danlos Syndrome, disability info, and more.

They also published a statement in October 2020, Post-COVID "Long Haulers" and ME/CFS, that explains how most cases of COVID long-haulers probably have ME/CFS and the history behind various infections, including SARS infections like COVID, triggering ME/CFS.

 

All of this is excellent, scientifically-based information that you can share with your doctor(s) to help them better understand, diagnose, and treat ME/CFS (including cases of "long COVID"). Our medical professionals are sadly lacking in training and up-to-date information on ME/CFS, so share this freely!

News From Our House: Tests, Treatments & Improvement!

It's been a long time since I've written one of these personal updates on my blog because I've been waiting until I had full information to share with you.  I have that now and can tell you about my 11-month-long crash and the tests and treatments that are now leading to improvement. Note that I also recorded a video, Tests and Treatments and Improvement, for my new YouTube Channel with a summary of this post, so if you'd rather listen/watch me explain it rather than reading (or in addition to), just head over there.

 

The couch where I spent most of 2020!

2020: My 11-Month Crash

2020 was a terrible year for me but not for all the same reasons it was terrible for the rest of the world. It didn't matter to me that everything was closed and cancelled and I couldn't see friends or family because I was far too debilitated to do anything anyway. Around mid-March last year, all of my ME/CFS symptoms suddenly worsened considerably, for no obvious reason. I had no energy, struggled to get up in the morning even after sleeping 10 or 11 hours, had horrible flu-like aches almost every day, and worst of all, had completely lost all of my hard-won stamina. Even the slightest bit of activity left me feeling even worse the next day.

Regular readers of my blog know that I was in pretty good shape before that; 2019 was a good year for me, in a string of good years. You can read more about my illness history on the Our Story page. Thanks to a variety of treatments, by 2019, my energy was quite good, I had mostly good days and crash days had become rare, and I could live a relatively active life with almost no post-exertional crashes (within limits but those limits were much broader than they'd been before). Then, 2020 hit.

By May, still exhausted, aching, and on the couch or in bed most days, I called my ME/CFS specialist and told her what had been going on. We both agreed it was likely that some sort of infection had triggered this crash, so she ran some tests to look for common culprits. Because of the immune dysfunction at the heart of ME/CFS, underlying infections have a huge impact on us and are constantly cropping up. COVID-19 was, of course, a concern, given the timing, but my antibody test then (and another one last month) showed I had not been exposed to it. The two infections that did show up in May 2020 were adenovirus (a very common virus that causes a mild cold in most people but could certainly be a trigger for someone with ME/CFS) and HHV-6, a common infection that gets reactivated often in people with ME/CFS (along with its sister, Epstein-Barr Virus, EBV, which is better known) and pops up often in my own lab tests. We treated the HHV-6 with Famvir, a prescription antiviral. However, after five months on it, I had experienced only very mild, minor improvement. Something was still very wrong.

My Lyme Disease and 2020

By the end of 2020, I decided to make an appointment with my son's Lyme specialist to see if she had any ideas for me. Lyme is also nothing new for me. I first got Lyme disease in 2008. Tick infections now occur in every state, country, and continent (except Antarctica) and are very common in those with ME/CFS. I treated mine with a few years of antibiotic treatment and then switched to herbal protocols that were gentler on my system but still effective. Since about 2012, I have considered my Lyme disease to be "under control." Every 2-3 years, it flares up (I can tell by the sudden onset of joint pain and nausea), I treat it with the herbal protocol for a few months, then it seems to go dormant or back into remission for a while. If I'd been paying more attention, I'd have noticed that the times in between flares were getting shorter and shorter, and some new symptoms cropped up, indicating progression.

So, in December 2019, my Lyme flared up again; my knees began to hurt, I got nauseous, and I knew it was back. I resumed treatment and was pain-free again within a couple of weeks (the way it usually works for me). As usual, I stayed on the herbal treatment for a few months. This time, though (damn that 2020!), every time I tried to stop the Lyme treatment, the symptoms returned within days. So, by the end of the year, I decided to meet with my son's Lyme specialist to see if she had any new ideas for me, to treat the infection more effectively. I had read an interesting study from Johns Hopkins about seven herbs that they found more effective than classic antibiotic treatment for Lyme, and I wanted to ask her about those.

 

My Visit and the Start of Improvement

At that very first visit with her in January, the Lyme specialist let me know that I wasn't taking the maximum dose of my current herbal treatments, which I didn't realize. She advised me to increase the doses (and by how much). As for the Johns Hopkins study, she knew about it and told me she did use most of those herbs with her patients, so I started on one of them within a week, Japanese Knotweed, one of the two they deemed most effective against Lyme at Johns Hopkins. As with everything, I started with a super low dose and moved up gradually, as I was able to tolerate more. When I started it and each time I increased the dose, I had a very mild Herx reaction (a temporary worsening common when treating infections like Lyme disease and reactivated viruses), which is an indication that it was working. 

I was shocked when I began to feel better almost immediately! With just these very minor tweaks--increasing the dose of what I'd been taking for over a year and adding one additional herbal supplement--my condition started to improve. Now, about a month later, I am almost back to my "normal" baseline! My energy has returned, the flu-like aches disappeared almost entirely, and I went back to mostly good days, with a mild crash day here and there. Best of all, my stamina began to return; I could walk again and go to the grocery store without crashing the next day.

I was stunned! All this time, I had assumed that my Lyme flare-up was a minor factor in that 2020 worsening and my 11-month-long crash. Now it appears, it was actually a significant factor--and maybe even the major underlying cause.

At the end of that visit in January, they took a lot of blood and ran dozens and dozens of lab tests, to try to get to the bottom of my worsening and find out what other infections might be lurking behind the scenes. 

 

Tests and Treatments

Here's a quick run-down of what my tests showed and how we're treating these issues:

Hypothyroid

This one was a surprise! I'm well aware that many people with ME/CFS have thyroid issues (the immune dysfunction causes endocrine dysfunction), so my primary care doctor usually checks my thyroid function every year, and every year, it comes back normal. This time, the lab tests show low thyroid function (known as hypothyroid). One important point to note: Many doctors only test for certain thyroid measures, which may miss some thyroid dysfunction. I looked back at my last thyroid test, from two years ago, and saw that my doctor only tested TSH (thyroid stimulating hormone), which was normal. In fact, my TSH was still normal this time, but the lab ran a full thyroid panel, and my T3 and T3 uptake were both low. So, everyone with ME/CFs should have thyroid function tested frequently, but be sure your doctor orders a full thyroid panel. Even low-normal results can benefit from treatment.

Treatment: I started taking a low dose of thyroid hormone a few weeks ago (after I started noticing improvement from the Lyme treatment), so it is probably contributing to the overall improvement of this past month.

Immune Function

Two immune measures came up abnormal (in this case, very low). I have had both of these tested before, they have both been low before, but neither has ever been treated directly (beyond the general immune modulators that have helped us so much).

CD57 - low

CD cells are a part of the immune system, involved in the creation of Natural Killer (NK) cells, which are known to typically be low in ME/CFS patients. CD57 specifically fights against Lyme disease (and some other infections). Mine is very low, which means my body can barely fight off Lyme anymore; there's nothing left! Running a CD57 test is actually an alternate way to check for Lyme disease, since testing of the infection is so very unreliable; a low CD57 can indicate the person's immune system has been fighting against Lyme. Mine came up low previously at least one other time, in a 2010 test.

Immunoglobulin M (IgM) - very low

I had a full immunoglobulin panel run, and most of mine came out normal. Immunoglobulins are antibodies produced by the immune system to fight off infections and diseases. Only my IgM came up low, but it was very low. IgM are the first antibodies a body makes when fighting a new infection (some tests look for infection-specific immunoglobulins, where IgM would indicate recent or new infection and IgG would indicate older infection). This means that my body is barely making any antibodies when confronted with new infections right now! This also makes it unlikely that I would make many antibodies if I got the COVID-19 vaccine right now (more info on the vaccines for those with ME/CFS here).

Treatments: She recommended I start with two treatments, which will both help to heal my intestinal lining. Since 70% of our immune systems are in our GI tract/gut, the first step to improving immune function is to heal the gut. I am going to start Mega Mucosa and SBI Protect as soon as they arrive (my visit was via the phone, so they are shipping my supplements to me). My son took both of these for a while when he had severe GI problems. Yes, I know they are each fairly expensive, but the hope is that I can heal my gut and improve my immune system, and then I won't need them anymore.

Infections

There weren't a lot of surprises in terms of infections. As I mentioned above, it is very common in ME/CFS for old, dormant viruses to get reactivated. So, I tested positive for:

• Epstein Barr Virus (EBV)
• HHV-6
• Parvovirus
• Chlamydia Pneumoniae (a bacteria)

These are the usual suspects, and I have tested positive for them in the past (including the positive HHV-6 last spring), but not usually all at once! This is another sign that my immune system is just not fighting back right now. Also, Lyme disease--just like ME/CFS--causes old viruses to reactivate, so that is a double-whammy. Again, it seems now, with all this information, that the Lyme disease was perhaps the underlying cause of last year's worsening, and then the domino effect kicked in, and multiple systems began failing, allowing other infections to flare up also.

Treatments: We decided to focus on herbal antivirals, since I just took a round of prescription antivirals last year, and they didn't seem to do much, plus I have a variety of infections flared up, and while herbals have a broad range, prescription antivirals are very specific to the virus being treated. My son and I both already take several herbal antivirals every day: monolaurin (a component of coconut), olive leaf extract, and emulsified oil of oregano (we take oregano in that form so it won't upset our stomachs). All three of these have antiviral, antibacterial, and antifungal properties, so we take them for a variety of reasons. Interestingly, since I figured viruses were probably behind the scenes, I increased my dose of olive leaf extract (from 2 every other day to 4 every day) in January, and I saw an improvement after that. So, she suggested adding one more antiviral to the daily mix: L-lysine. We've taken that before, and I still have some here, so that's an easy one (it's inexpensive, too).

And, for Lyme disease, I will continue to increase my dose of the herbal treatments I'm already on, and slowly and gradually add in a couple more.

Last week, I felt so good that I was able to take a walk six out of seven days, go to the grocery store, spend 90 minutes dusting, and even help my husband with shoveling snow one day (all while wearing my heart rate monitor and resting when the alarm went off), with no crash after any of those activities! That pretty much brings me back to my "normal" baseline, where I was before the Year of Horror began. With this kind of stunning improvement after just a month, I am feeling very hopeful and optimistic. Who knows? Maybe I'll even end up better than I was before 2020! If I can get the Lyme disease under control and improve my immune system with these treatments, then that's a very good possibility.

Remember, there is a video available on my new YouTube Channel if you'd like to hear/see me explain all of this.

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