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It’s been almost six weeks since I started taking low dose naltrexone to see if it would help my ME/CFS so I thought it was about time I reported back.

To recap if you haven’t read previous posts: naltrexone at a high dosage (50-100mg) is a drug used to treat alcohol and opiate addiction, but in low doses (1.5mg – 4.5mg) it was shown to have some effectiveness for chronic conditions like ME/CFS and fibromyalgia. At low doses, naltrexone temporarily blocks receptors associated with pain and stimulates the release of endorphins; those benefits stop if the dose goes much beyond 4.5mg.

But low dose naltrexone (known as LDN) is still considered experimental, and is not covered by the pharmaceutical benefits scheme. It isn’t something stocked by regular pharmacies so you have to get it compounded, “off label”. It costs about $90 for 100 1.5mg capsules, so it’s not cheap. Since being on Centrelink this year I have greatly enjoyed getting super cheap prescriptions, so I guess the cost kind of balances out if I consider I haven’t had to pay full price for my other meds. Also I get some money back from my health insurance. But still, it’s a cost to factor in.

It also doesn’t work for everyone. Some people notice a great improvement, other notice no change at all.

I tried 1.5mg every day for two weeks and didn’t notice any significant change. I went up to 3mg and almost instantly noticed a difference. The heaviness in my limbs lifted, and I found it easier to do multiple things in a day without needing a huge rest in between each. I’m not bounding off the walls with energy, but it makes it easier to get up and do the normal things you need to do in life without feeling like you’re wading through treacle.

The downside is because I can suddenly function better, I haven’t been paying as much attention to pacing myself as I need to. I’ve been very busy in the past three weeks, with various video and writing jobs, massage clients, as well as supervising end of year exams at St Pats, and having our big final concert for Symphonic Band and Wind Orchestra. I accepted all the work because traditionally in December my freelance work dries up completely, so you have to make hay while the sun shines. But I’m starting to feel like I might have pushed it too far.

I’m currently sitting in the final exam I’m supervising, and though I was grateful for the work (which Jess lined up for me in the Before Times) I am so glad it’s almost over. The cumulative effect of expending too much energy takes longer to hit, but it still will always hit eventually.

The other thing is I’m still dealing with the grief load following Jess’s untimely death. I am so grateful for both the LDN and the change of anti depressants in recent months, as my mood has been fairly stable. I’ve experienced the usual and right grief you would have when someone dies, but it hasn’t completely wiped me out and dumped me in a hole like it would have a few months ago. That being said, as I’ve been getting tireder I’ve been feeling the sadness a lot more and getting unreasonably angry/overreacting to things, so that’s another reason to look forward to some quieter weeks.

The concert last Saturday was good but it was pretty emotionally draining for a few of us. Both bands played a couple of pieces in Jess’s memory and her French horn sat on her empty chair during Symphonic Band’s set. In our last piece, How to Train Your Dragon, I was doing fine til it got to the French horn solo, which I always used to listen out for (it’s a lovely line). May played it beautifully but it did me in. Chin started wobbling, eyes welled up. Then I realised the two oboes beside me, one a student of Jess’s and the other a friend, were both crying. Then I looked up and our conductor, also a close friend and colleague, was tearing up and…well we finished the piece triumphantly but it was a challenge! I was so exhausted and emotional afterwards, I drank a couple of large glasses of red wine and all but passed out on the floor at my friends’ house.

Yeah so not really looking after myself as well as I could be.

Anyway back to the LDN. I missed a day when i was waiting for my script to be filled (didn’t realise the compounding pharmacist is only in two days a week). The next day the heaviness was immediately back. My throat felt swollen and sore, my arms and legs like I’d been lifting weights, my brain cloudy. Thankfully the effects of the LDN are pretty rapid so I was back on track the next day. But it showed me just how well it’s working. I haven’t tried going up to 4.5mg (the max dose) as I figure if it’s working at this dosage I won’t mess with it.

I am very grateful to have a GP who is curious and willing to try new things. I asked him how he’d come across this treatment, because I know that some GPs won’t even entertain the idea of trying treatment that isn’t approved by the Therapeutic Goods Administration. He said he had another patient who had tried it, and he attended some seminars on it around the same time. So when I was diagnosed he was already primed and knowledgeable about the treatment.

(I’m very fond of my GP. He sounds like Shrek and we almost always have a good laugh about something or other when I see him. After years of indifferent GPs it’s nice to have one who seems to genuinely care. And has a sense of humour.)

So anyway that’s how it’s going. If you have a chronic condition that could benefit from LDN I’d talk to your GP about it. And if they don’t want to pursue it…get a second opinion.

More info:

World-first laboratory study finds low-dose Naltrexone may improve ME/CFS symptoms

LDN Research Trust