Taking ownership of my own healing: exciting or overwhelming?

If there is one thing I have learned on this health journey, it is that you have to take ownership of your own healing. There are so many facets to recovery from chronic illness and the truth is that the crucial elements will be different for everyone. And unfortunately, while there are some great conventional and alternative medical practitioners out there, even in the Lyme community the vast majority of them only know how to target a few elements of healing. If you want to understand the whole picture, you have to find your own path.

In many respects, taking ownership of your own recovery journey is very rewarding. It encourages you to tune in to your body and really listen to the messages it is providing; something which we are very rarely encouraged to do in our busy western world. It seems that what society values most is the ability to “push through”, to be super(wo)man and just keep on going, no matter how much you feel like crap. If something hurts, take a pill, push it down and hope it goes away. We all feel a bit crap sometimes so just suck it up and get on with it.

But I really don’t believe anybody can continue that way forever without paying the price. For me, I have no doubt that that attitude paved the way for chronic illness. But when there is no-one there to give you a pill to fix it anymore, when conventional medicine tells you it has nothing left to give, then you have no way of pushing it down and hoping it goes away. No matter how hard you try, you can’t push it down, and it sure as hell isn’t going away. And so begins the process of noticing, of listening and trying to understand what is really going on inside.

Recently I have been delving into the biochemistry and genetic factors of chronic illness, which happened totally by chance. It has been pretty fascinating and I have been mind-blown by some of the things I have read. I know that I am so fortunate to have access to medical research through my work, as well as enough scientific knowledge to be able to (mostly, at least) make sense of what I am reading. And I love to learn, especially when it comes to the human body, so in some respects I have enjoyed this process, and I have taken a lot from it that I have been able to apply to my own situation in order to hopefully aid my healing.

But on the other hand, it is massively overwhelming. The sheer amount of information I have had to learn in order to try and understand what is happening in my body and why I might not be recovering, is enormous. I am feeling the familiar pull of wanting to learn as much as I can in order to help my healing, but also knowing that I need to not get carried away into a place where it becomes all-consuming and feeds into that cycle of fear, panic and helplessness that is only ever one small step away. If I just read one more paper, look at one more website, order one more book, perhaps I’ll have all the answers. But there is always another paper, another website, another book. It is never-ending. And before you know it you are spending hours and hours researching in the hope that you might learn something beneficial, but really, it is all a stab in the dark and you don’t know what the hell you are doing.

I want to share with you a story about the particular rabbit hole I have taken myself down lately, to illustrate how this happens.

A few weeks ago, I started tracking my heart-rate and heart-rate variability on a regular (daily) basis because I sensed I was reacting to some foods in my diet, and HR/HRV can be used to monitor your body’s stress response, including in relation to diet. My HR was consistently really high, but as I have become so trained to do, I told myself it was no big deal and probably didn’t mean anything. It was only when I mentioned in passing to my boyfriend that my heart-rate, at 90 beats per minute, was “the slowest it’s been all day”, that his reaction told me this was not normal and I should maybe be a little bit concerned.

So began my googling. I searched online and in a few facebook forums, and came up with a few ideas of what might be causing it. One of those ideas was a supplement that I had started taking a few months earlier, called N-Acetyl-Cysteine. There was one comment from one user in one facebook group who said NAC gives them tachycardia (high heart rate). So I decided to take a temporary break from the NAC to see if it had an effect and after only two days, my HR had normalised. It was around 65bpm at night-time, and anywhere from 70 to 90 bpm in the day-time (normal for me). While I had been taking the NAC my night-time pulse was averaging 80bpm, and ranging from 85 to 130 bpm during the day-time, without doing any exercise other than walking around.

While it is great that I identified the NAC as the source of my tachycardia, it is also kind of terrifying. Presumably my heart-rate had been high for months, but I hadn’t even noticed until I started tracking it for unrelated reasons. I am not a cardiologist, but I presume that having a constantly high heart rate 24/7 for months on end is probably not healthy for your heart. And yet, NAC is so commonly discussed as a helpful supplement for those with Lyme and other chronic illnesses. Exactly why we all need to take ownership for our own health and not hand the responsibility over to anyone else, no matter what their qualifications. NAC might be a really helpful supplement for some, and it might be a standard part of many protocols, but it could also be really harmful.

But my little rabbit-hole didn’t end there. I listen to lots of health podcasts, partly because I find them interesting but also because I pick up lots of helpful tips for improving my health. Around the time I was learning about the NAC/tachycardia link, I happened to listen to a podcast about genetic defects in patients with Lyme disease, and NAC was mentioned. Naturally, my ears pricked up. The interviewee (Bob Miller) said there is a genetic variant that is common in Lyme patients that, because of the impact the variant has in the body, will cause more inflammation if those patients take NAC supplements. Mind. Blown.

So here is what I have learned about NAC and why it might have been counter-productive for me to take it. This gets technical, but there is a point to my story, so please bear with me.

  • N-Acetyl Cysteine (NAC) can be helpful as a supplement because cysteine converts to glutathione in the liver. Glutathione is the “master antioxidant” that is responsible for liver detox, which is important for everybody but especially those with chronic health issues who, for example, take lots of medications, have chronic infections etc etc that all need to be removed from the body. Also, glutathione is anti-inflammatory and supports immunity. Ok, so glutathione = good guy.
  • There are a set of genes related to the conversion of cysteine into glutathione in the liver. Defects (aka variants/mutations/SNPs) in these genes mean that the conversion of cysteine into glutathione is impaired.
  • Patients with chronic Lyme disease are significantly more likely to have defects in these genes compared to the general population (anywhere from 1.15 to 30 times more likely, depending on the particular gene).
  • If you have defects in these genes and you supplement with NAC, you are pushing a pathway that is malfunctioning. You are adding extra cysteine into the body, but since that cysteine cannot convert to glutathione in the way that it would in normal circumstances, you end up with a whole bunch of extra cysteine that is effectively “stuck”.
  • This excess cysteine combines with iron and oxidises = oxidative stress, which causes inflammation and essentially makes you feel terrible.

As I said. Mind. Blown.

This is awesome, I have now learned a bunch of cool stuff about the human body and I have a potential explanation for why NAC doesn’t agree with me – it is likely that I have the genetic variant described above. Not only does this confirm that I probably shouldn’t take NAC anymore (just in case the heart-rate wasn’t message enough), it actually gives me information about my detox pathways that I can work with. For example, in the podcast I was listening to, they said that for patients who have these issues, supplementing with a particular form of glutathione called S-Acetyl-Glutathione (which actually helps cysteine convert to glutathione in the liver), will be beneficial. Many Lyme patients supplement with other forms of glutathione, but apparently this can also make you feel worse if the cysteine-glutathione pathway is impaired.

So here leads me to the title of this blog post. I am super excited by all this new knowledge I have acquired, partly because it has given me actionable steps that might help to reduce inflammation and improve my liver’s ability to detox, but also, because I am a massive nerd.

But also, WTF? I mean, seriously, what the actual F? I am just a person with chronic illness who is also doing a PhD and has a boyfriend and likes yoga and has pet rabbits. I am not a biochemist, nor a geneticist. Nor do I have hours and hours worth of free time to be burrowing into rabbit holes about such things as N-Acetyl-Cysteine, S-Acetyl-Glutathione, genetic defects or oxidative stress. And yet here I am, firmly down this rabbit hole having, somehow, spent those hours and hours that I don’t have, teaching myself about all those things.

I learned all of this just from one supplement that I happened to notice by chance was causing me tachycardia and because one man on one facebook post mentioned the same thing happened to him. Imagine all of the other information out there that I don’t yet know about. That I will probably never know about because let’s face it, one person who has a job and is attempting to live a normal life on top of chronic illness cannot possibly learn it all. Exciting, or overwhelming?

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