Reprinted with the kind permission of Sue Jackson.
By Sue Jackson
I wanted to share what happened the past few days because it is a great example of how much better I am doing now than I was 5 or 10 years ago, thanks to treating immune dysfunction which is at the heart of ME/CFS.
My college son called last week saying he had bronchitis. It’s a common occurrence for him and for me, probably because the characteristic immune dysfunction in ME/CFS generally makes us more susceptible to bacterial infections. By now, he knows the signs and understands how important it is to nip it in the bud, so as soon as he felt that tightness in his chest and began to cough, he saw our doctor and got on antibiotics. He comes home every Sunday so I can refill all his medicine boxes (and for Sunday dinner!), so we’d all been together a few days earlier.
Soon after his phone call, my younger son said he felt like he was getting a cold – scratchy throat, runny nose, etc. These two things taken together – in a house where 3 people have ME/CFS-type immune dysfunction – usually means we have been exposed to a virus, as is typical at the start of a new school year. Like most people with ME/CFS, we rarely catch colds or other viruses, but being exposed to one triggers a crash (which is sometimes hard to tell apart from a virus!). I have always referred to these kinds of crashes as virally-induced or virally-triggered.
In our experience, virally-triggered crashes are the worst kind. In the past, being exposed to a virus like that could knock my older son and me out for weeks or even months in the fall and winter especially (and my younger son, whose ME/CFS was milder, might be down for a week or so).
So, on Saturday morning, when I woke still feeling exhausted with a sore throat and feeling achy all over, I thought I was in for a long, difficult week at least. I had to help my father-in-law with some more moving-in tasks Saturday morning, but by noon I was headed back home to bed. My husband and I had to cancel our rare night out alone in favor of take-out and TV. I woke Sunday morning still feeling awful, with classic crash symptoms.
But then something amazing happened. I took my nap early on Sunday because we were expecting six people for dinner, and I still had to refill our 12 medicine boxes (all of which I was dreading). But I woke up from my nap feeling a lot better. In fact, I managed the medicines and dinner just fine and still felt OK at bedtime. I woke up this morning feeling like I usually do – well-rested and good, with no obvious CFS symptoms!
What was responsible for this almost-miraculous shift from month-long virally-triggered crashes to just 36 hours? I believe it’s inosine and other treatments that target the immune dysfunction.
ME/CFS is, at its heart, an immune system disorder, as I explained in that previous post. The characteristics of that immune dysfunction have been well-defined in research studies, with a Th1-Th2 imbalance (Th2 dominance) predominant and low Natural Killer Cell function (it’s explained in that post). In the case of ME/CFS, immune boosters or immune suppressants are equally ineffective for us – we need immune modulators or normalizers. Over the years, we have tried several treatments to try to normalize our immune systems, and some have been quite effective.
One of the first things to do is to find and treat underlying infections. The immune dysfunction causes reactivation of dormant viruses and susceptibility to bacterial infections. Most people with ME/CFS will test positive for some viruses that are common but normally dormant in the general population – anti-virals can help with those. Many people also have Lyme disease and/or other common tick infections (a negative test is meaningless, since there are no accurate tests for any of these infections yet), especially if joint pain or severe brain fog are part of their symptoms.
Once you’ve treated underlying infections – or at the same time – there are various treatments to try to normalize the immune system. Two that we’ve found very effective are low-dose naltrexone, which gave me an immediate boost in energy and mental clarity, and Imunovir or inosine (similar compounds).
I think the inosine in particular has had positive long-term effects (we started with Imunovir, a prescription medication, but when it became unavailable temporarily, we switched to inosine, the generic equivalent sold in the US as a supplement and found it just as effective and much cheaper). This week’s experience is a great example. Since starting inosine, virally-triggered crashes have become rare and only last a few days instead of weeks or months. Winter used to be torturous for me, with one virus after another being brought into the house (with two school-age kids), and my son and I often crashed for much of the season. No more! I also generally have more good days and fewer bad days, and my stamina is much improved (beta blockers also helped with that). Immune-type symptoms (sore throat, swollen glands, feeling feverish, flu-like aches) have become rare.
So, with these improvements, any kind of crash has become rare for me, and a long-lasting one almost never happens now. My allergies have improved, too (another sign of the immune system being more normal). My son has seen all these same improvements, and I think inosine is a big part of why he is able to be at college now, living on campus. These treatments are what are helping us to lead more normal lives, even though we both still have ME/CFS.
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Suzan Jackson is a freelance writer who has had ME/CFS since 2002. Both of her sons also had ME/CFS. One is now recovered, and the other still has the illness, plus Lyme disease and other tick infections. She writes a ME/CFS blog, Learning to Live with ME/CFS, as well as a book blog, Book By Book.
You can follow Sue on Twitter @livewithmecfs.