Facing the fear: Low dose naltrexone

When I started this blog, I was unsure whether to include posts on specific treatments. By writing on a public blog, you are inviting opinions from anyone in the world who decides to read what you’ve written. I have surprised myself at how willing I’ve been to blog about quite personal topics, like my recent post on infertility, but writing about medications/supplements really frightens me, and I’m not completely sure why.

Perhaps its because I worry that someone will get in touch with evidence that a treatment isn’t as effective as I think it is, or that it has potential side effects I’d not considered. Then what would I do, if I realise that my original decision was misinformed? Or perhaps it’s because, in letting the world know what treatment I am trying, I open myself up to giving the world the disappointing news, somewhere down the line, that the treatment hasn’t helped. I’ve tried a few things over the years to help my health and honestly, most of it has only had a small effect at best. I’m kind of used to this disappointment now and when I try something new I always go in with equal doses of hope and realism. But the rest of the world may not be so accustomed to such disappointment, and how sad I would feel to have to break the news to all those who are rooting for me, that a treatment I’d posted so publicly about has not helped.

Then I think there’s a degree of shame when it comes to drugs. Somehow you are a failure if you have to resort to medication. People frown upon drugs, tutting at the thought of someone so young and apparently healthy on the outside popping pills at night. Similarly, I feel a huge sense of embarrassment about anything ‘alternative’ like supplements or dietary changes. They are so massively unaccepted by so many people in the medical community that I think we are programmed to believe that if it’s not powered by a drug company, it’s useless. I am a huge believer in holistic health and in the importance of nutrition for a healthy body, but somehow I still feel like I have to convince people that this is common sense and not hocus-pocus.

Anyway, whatever the reasons behind my fear, I am trying to follow the attitude I always set for myself, which is – feel the fear and do it anyway. I have lived most of my life with varying degrees of anxiety and many years ago I firmly told myself that I would no longer let anxiety rule my decisions. That’s why I’m in a job that requires me to give presentations, despite being incredibly socially anxious…I’m sure my brain must swear at me on a very regular basis.

So here I am, posting about a new treatment: Lose Dose Naltrexone, or LDN. Naltrexone is an opioid antagonist, and it’s licensed for the treatment of alcohol and drug dependence. Preliminary research has shown promising use of low doses of naltrexone (1-4mg; about 1/50th of the dose used for drug dependence) in treating a range of chronic conditions including chronic pain, autoimmune diseases like Crohn’s disease and Multiple Sclerosis, and viral infections including HIV/AIDS. Unfortunately, since LDN is no longer under patent, no pharmaceutical company stands to make any great profit from it. This means, in turn, that no drug companies have any motivation to fund clinical trials into its use. There are some small-scale studies that have found it to be successful in treating a range of conditions, but none big enough or conclusive enough to say that LDN should be used as a first-line treatment. It is therefore up to patients like me to stumble across it themselves, and find a doctor that is willing to prescribe it. It is perfectly legal, but requires an open-minded doctor that is happy to prescribe off-label.

Because of the lack of definitive research, it is not entirely understood how or why LDN works. But it is believed that its main mechanism of action is in its ability to increase endorphin release. Endorphins modulate the immune response. I am yet to read enough science to understand exactly how this happens, but interestingly I read today about a link between oestrogen and endorphins. Apparently oestrogens increase production of endorphins (*fascinating tidbit: the soaringly-high levels of oestrogen at the end of pregnancy mean that endorphins are super high during childbirth, right when they’re needed for pain-relief. Isn’t the human body incredible?). So, this potentially provides an explanation for my EBV-oestrogen link. I have always had more frequent and severe EBV reactivations when my oestrogen is low, which could be because when oestrogen is excessively low, my endorphins will be low too, and low levels of endorphins impair the immune response.

Anyway, I first came across LDN about a month ago, and have had it in the back of my mind since then. After a few weeks of poor health, I decided to pursue a consultation with a UK doctor who prescribes it. Today, I had that consultation, and she agreed to support me in a trial period of LDN. So, as of next week, I will be taking LDN. I have been given all the warnings that a sensible doctor should give: that it’s not a miracle cure, it’s not guaranteed to help, and I could experience side-effects. Generally LDN is being used for autoimmune diseases, and the only evidence I have found for its use in EBV is completely anecdotal (confession – most of it is actually on a Facebook group, which in the academic world of ‘knowing your sources’, really is about as unreliable a source as you can get). Nonetheless, it has a good side effect and safety profile as far as the evidence goes, and having weighed up all the evidence I am pleased to at least be giving it a go.

Here’s hoping, with my ever-realistic hat on, that I may see at least some small benefits from LDN.

http://www.ldnresearchtrust.org/sites/default/files/2016-LDN-Factsheets.pdf 

4 thoughts on “Facing the fear: Low dose naltrexone

  1. You truly are a remarkable daughter and I don’t mind if the whole world reads this….. I know how hard it is for you and how hard you’re trying to find a positive approach/solution despite going in ‘blind’ ( no formal medical knowledge/background).
    We will keep trying forever xxx

    Like

  2. I’ve been taking Low Dose Naltrexone for three months now (for ME and Fibro). It’s already making a very noticeable difference to my symptoms and is the main subject of my blog here on WordPress. Side effects have been minimal and shortlived. Best of luck with it

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    • Thanks bluescreenreboot. I’ve read your blog with much interest and have seen your LDN posts. I’m so pleased it’s making a difference for you.
      I’ve been taking it for a week and do currently feel quite well but my symptoms do cycle anyway so I’m not getting too excited yet.
      I hope it continues to show benefits for you x

      Liked by 1 person

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