For desperate ME/CFS patients, prescriptions medications of all kinds are just another game of chance.
Never had I ever dreamed I’d be prescribed canine heartworm medicine, but here we are. This is what we have come to: a modality we all thought would have by now been relegated to decades past.
I first learned about Ivermectin while studying to become a veterinary technician in 2008. The drug the most commonly used antiparasitic (kills parasites) in small animal veterinary practices. Ivermectin is primarily utilized to prevent heartworm infections in dogs.
So that’s what was in those weird chew squares we gave to our golden retriever every month when I was growing up. But it’s just for dogs, right? No, it’s used on guinea pigs, too. So ok, we’ll see how this one goes.
I never took the Ivermectin. The state I live in has constraints that did not allow me to obtain it. The doctor had prescribed a litany of other drugs that were also unavailable to me. I didn’t care though, because I knew none of this stuff would put a dent in how I feel anyway.
Living with ME/CFS is bizarre and painful. Pretty much everything about your life becomes unacceptable for you, and rightly so.
Along with having to wait more than a decade for a proper diagnosis, one of the most unacceptable things about my illness has been having to wait even longer than ten years for any type of non-psychiatric prescription medication. Most of us wait years, some wait decades. Some are lucky enough to wait f or only several months. However, no matter how long one must wait for legitimate treatment, whether that treatment will work or not is an agonizing matter of chance.
I had very high hopes for low-dose naltrexone. I started it in September 2022. I had caught the dreaded Covid about a month prior and although I had recovered from the worst of that gut-punch, my ME/CFS was the worst it had ever been. Feeling like I was physically dying – and I mean that literally - I patiently waited for the LDN to take effect as I slowly built up the dose over several weeks.
But then, nothing much happened. ME/CFS is known to worsen after a Covid infection, and over time that ungodly dying sensation became less profound, but I was sorely disappointed in the drug.
From what I had read, 73 percent of ME/CFS patients saw marked improvement with LDN. Some even said the medication had given them their lives back. Unfortunately, I seem to have fallen into the unlucky 27 percent for whom the drug does basically nothing.
photo by Towfiqu Barbhuiya
I still had to take stimulants most of the time when I left the house just to have the energy to be out and doing things. My quality of life remained (and still does) terrible. Finding any kind of job was off the table. Just thinking about traveling remained a pipe dream, as my life was still completely invaded, my topography occupied by the menacing ME/CFS.
Because this disease is a DIY illness, I turned to social media, where fellow sufferers offer management techniques and possible medication ideas. (After all, it’s where I’d been reading the praises of LDN.) As a legion that is both creative and resourceful, we come up with ideas that most doctors would never think of, and sometimes those ideas actually work out. I read about low dose lithium and how it’s helped some with Long Covid. Luckily my doctor is open to new ideas and gave me the prescription. After some time, with no results, the dose was upped slightly. Still nothing.
Next, I asked about Metformin, yet another medication I learned about on various social media platforms. I got a prescription. Nothing.
Costly IV fluid therapy did nothing.
Prescription-strength vitamin supplements did nothing.
Prescription antihistamines did nothing.
Oxaloacetate did nothing.
Huachuma cactus juice did nothing.
And the list goes on and on.
I don’t want to be told I need to pace myself for the rest of my life – meticulously measuring out each day’s activities to keep everything at a fragile balance while those around me get to just go out and be in the world. For me, pacing is not a solution.
It’s not a life.
Pacing is living a severely diminished existence, quite possibly permanently, while those around you get up every day, go to work and be part of things. You must stay behind, at home, to prevent symptom flare-ups. Personally, I just can’t accept this as an endpoint.
I never thought I’d be prescribed heartworm medication, but I also never dreamed I’d be disabled in my 40s and having monthly doctor visits with each new month offering up a new, absurd medication that may or may not have any effect on an elusive illness that has entirely crushed my life.
And so, everything is a shot in the dark, and I wish every single day that it didn’t have to be. I wish every single day that this awful disease hadn’t been so grossly ignored and ridiculed for so, so long. I hope every single day that a cure or at least a standard, effective treatment will be developed and become immediately available so that no one must live such a relentlessly inhumane existence. I must admit, however, my hope of any of this happening in my lifetime is shaky at best.
—Bridget O’Shea