Wednesday, October 14, 2020

The October Slide: ME/CFS and Infectious Triggers

Some with ME/CFS call it The October Slide. Others refer to it as a seasonal downturn. Many patients don't call it anything but wonder why on earth they feel so awful during fall and winter. My son and I used to experience this, too, every year, spending endless weeks--or months--with both of us crashed and unable to get up off the couches and recliners. Although this is now rare for us, I re-experienced this phenomenon this past week, when I abruptly went into a severe relapse that kept me home and lying down for a week (I'm not back to my normal baseline yet but am starting to feel better).

The good news is that there are medical, scientific reasons for this annual fall/winter downturn, and it can be treated and eliminated. As I said, my son and I used to spend much of each fall and winter badly crashed, and it is now a rare occurrence. We also used to both get bacterial bronchitis 4-5 times a year (often in fall and winter) that knocked us out completely and required antibiotics (sometimes multiple rounds). These days, we may each get bronchitis once every two years or so, and we usually catch it early, treat it, and only spend a few days crashed from it. You can say good-bye to the October Slide and the fall/winter crashes, too. Here's how:

What's Going On

ME/CFS is, at its heart, an immune disorder. It doesn't fall neatly into the categories of immune-deficient or autoimmune, though, as most immune disorders do. Instead, we have characteristics of each, with parts of our immune systems over-reactive and other parts under-active. This blog post, Immune System Abnormalities in ME/CFS, explains in simple terms what's going on behind the scenes that contributes directly to our seasonal downturn.

The common worsening and frequent crashes most of us experience in fall and winter are mainly due to exposure to infectious agents. While, as explained in the post linked above, our immune dysfunction means that we rarely "catch" colds, flus, and other viruses, just being exposed to them can cause our already-overactive immune system to go further into overdrive. The crash symptoms we experience in fall and winter are usually symptoms of our immune systems getting seriously over-stimulated: things like flu-like aches, sore throat, swollen glands, worse fatigue/exhaustion/lack of energy, and sometimes a fever or feeling feverish even with a normal temperature. Alternatively, when someone catches a cold or flu, they will get the classic symptoms of it, which might include severe congestion, cough, high fever, etc. In the example of my bad crash this past week, which was almost definitely from exposure to some infectious agent, for a couple of days I had a bit of a runny nose, a tiny bit of mucus in my chest in the morning (again, I am prone to bronchitis), and maybe a very mild fever on a couple of days. But my main symptoms have been severe head-to-toe achiness, complete lack of energy and extreme exhaustion, and a mild sore throat--all signs of immune activation.

What was I exposed to last week? I have no idea! Both of my sons were out of town and returned last Sunday, so they had certainly been exposed to stuff. I was in the grocery store the week before (with a mask, of course). That's the point about this time of year: there are more colds, flus, and other infections floating around, with more people indoors where the germs are easier to get exposed to. I'm guessing it was a simple cold germ since flu season isn't really here yet, though of course in 2020, we are all concerned about coronavirus, too. There are dozens of viruses floating around in the air at any time.


What Can You Do?

There are two important steps to stop this annual seasonal downturn: 

  1. Improve Your Immune Function
  2. Treat When you've Been Exposed to an Infectious Agent

Improving immune function in ME/CFS is tricky because it's a mixed bag, so the treatments used for immune deficiency or for autoimmune diseases won't work for us. Instead, we need to focus on what's known as immune modulators, which will help to normalize the immune system (rather than boosting it or suppressing it). We have found three treatments which help to do this: low-dose naltrexone, inosine, and glutathione. These are all inexpensive, and the last two don't even require a doctor (though it's always good to discuss any new treatments with your doctor(s)).

This blog post, Treating Immune System Dysfunction in ME/CFS, covers all three of those treatments and provides more detail on the immune dysfunction that is common in ME/CFS.

Using those three treatments put a stop to the annual fall/winter crashes for both my son and I and to our frequent bouts of bronchitis (which occur because our immune systems under-react to bacterial infections). We both no longer experience a seasonal downturn nor the severe and long-lasting crashes that come from exposure to infectious agents in fall and winter. 

But, of course, I did crash from a likely infectious trigger last week, so it can still happen on rare occasions; we just don't spend all winter battling it anymore. And when it does happen, it only takes a day or so for me to recognize that I was probably exposed to some infection (because of the severity of the crash; with these and other treatments, I no longer crash badly from over-exertion). When that happens, I listen to my body and rest as much as I need to (I have been pretty much couch-bound the past week), but I also increase my dose of herbal antivirals/antibacterials. 

My son and I both take a range of herbal antivirals/antibacterials/antifiungals every day in our daily meds boxes, including Emulsified Oil of Oregano (ADP), Olive Leaf Extract, Grapefruit Seed Extract, and Monolaurin. But on weeks like this, when I've been exposed to something that's made me crash (or if I know someone near me has a cold, flu, etc.), then I add extras. This past week, I more than doubled my dose of Olive Leaf Extract (from two every other day to four every day), and I have been making my son and husband take it, too! Yes, these work for healthy people without ME/CFS like my husband, too. After a week, my mild viral symptoms are long gone, I am starting to feel better, my husband hasn't caught anything, and my son hasn't crashed.

All of this is further explained in the post, Treating Virally-Induced Crashes in ME/CFS


You do NOT have to accept and live with the annual worsening and extra crashes every fall and winter! These treatments will not only help to prevent that seasonal slide but will also help to improve all of your ME/CFS symptoms, including exercise intolerance. Since immune dysfunction is at the heart of our disease, improving and normalizing your immune system will help to make everything better. It's not a cure--that doesn't exist yet--but these are improvements that can vastly improve your ability to function and your quality of life.

Have a wonderful fall and winter!

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Katie Clark said...

I have Fibromyalgia (plus other tuings). I struggle with fatigue but I don't think I have MF/CFS. However, LDN has helped immensely. I've asjed my GP to prescribe 50mg tablets which i make into a suspension. Without insurance coverage, 12 tablets cost $15. I use 2.5 mg at night and 1.5 mg in the morning. So, 4.0mg a day. One pill lasts 12 days. So, not so expensive.

Sue Jackson said...

So glad to hear that LDN has helped you, too, Katie! That's great - I know there are some studies showing its effectiveness for fibro.

I know of many patients who make up their own low-dose naltrexone, and that's great - I'm glad it works for you! But, it is also - as I say in this post - quite inexpensive even if you get it through a compounding pharmacy. Can definitely get it for less than $100 for 3 months' worth (and sometimes even less than that) AND if you have insurance, they will cover some of that (usually you have to submit claims for reimbursement for compounded meds after you first pay out of pocket).

So, there are lots of options, and most of them are inexpensive. Inosine is also super-cheap :)

Great that each patient can do what works for them.

Thanks for sharing this, since I hadn't mentioned the DYI option!!