Addendum to I’ve been lied to…

Working on the assumption that I do have a high plasma concentration of albumin (see last post), starting yesterday I’ve paid closer attention to my hydration – drinking regularly, not just when I’m thirsty – and taking 30mg of zinc, which acts on albumin to reduce its volume.

And today I have had the best, and busiest, day for many months. OK, I’m spoonlessnow, but that’s perfectly normal. What I don’t feel is as if I’m about to die, which has been my default state for the past six months or so after the slightest effort.

I’m also extremely hungry these days – a backlash against the months of starvation presumably. Needs watching though as I’m piling on weight very easily – and every ounce goes on my waistline. Even so, I’m still a shadow of my former, fat, self, but I still need to drop maybe 5 kilos, down to 75.

The question still remains, though – just what the hell is wrong with me? What got me hospitalised on the brink of dying from starvation, having become too ill to even feed myself?

Something struck last Christmas, with diarrhoea and vomiting, that slowly ground me down so that by March 15, when I was admitted to Arrowe Park Hospital, I’d lost 31kilos, a lot of that muscle mass, was totally unable to eat, and barely able to walk.

I was, though, vaguely aware that I was dying, and if I didn’t do something I simply wouldn’t survive. Even then, I held off calling an ambulance, and it was only the remorseless harrying by a bunch friends, both on and offline, that tipped the balance, for which I’ll be forever grateful. It could so easily have gone the other way, as I tend to dig my heels in when pushed. Luckily the instinct to survive was stronger.

I suspect the hyperalbuminemia was/is real, as I was dehydrated, which is a major cause, but it’s not, as I’ve said, normally fatal and is easily treated by hydrating the patient and/or supplementing with zinc. Perhaps I was, as I was plugged into an i-v for much of the first week – my consultant tended towards the uncommunicative.

So I concede the presence of hyperalbuminemia, but that’s not going to kill me. So what is, anything? My heart, most likely, not least because, based on my lymphoedema, the first symptoms of which appeared about 7 years ago, my heart has been failing for a long time.

You will, by the way, search long and hard on Google to come up with any information regarding heart failure causing lymphoedema – even the British Heart Foundation is silent on the subject. However, using the search term lymphoedema heart provided the information I needed.

In my case the cause is almost certainly right-sided heart failure. I’m confident of that because the early signs were identified in the mid nineties and it’s not something which goes away. And, of course, I have aortic valve calcification and stenosis, which restricts blood flow from the heart, and which can’t be helping. It also causes left-sided heart failure, so it’s in the cards.

In APH, I discussed the prospects for a heart-lung transplant with either the consultant or his HO, I misremember which, and while there was agreement that I’d certainly benefit, my age ruled me out. Not, I’m pretty sure, that I’d submit to the surgery anyway – the thought of living with a dead person’s organs inside me fills me with a vague horror.

Anything else that I know about? Well, yes, my adrenal glands are failing – adrenal insufficiency. Ruling out suddenly stopping long-term steroids, or developing a condition called Waterhouse–Friderichsen syndrome, we’re left with  Critical illness-related corticosteroid insufficiency as a possibility. However, other than being critically ill, I had no symptoms of this. The principal indicator is low blood pressure – my problem was high BP, so that’s ruled out too.

It could, just about, be Addison’s Disease, but, given that I have ME, it’s very good odds that my hypothalamus is haywire – the fact that I’m cold at temperatures below 28C is a good indicator that all is not well there – my internal thermostat, controlled by the hypothalamus, is out of whack.

Corticotropin-releasing hormone (CRH), is manufactured within the hypothalamus, from where it goes to the pituitary gland, and prods it into stimulating the production of steroids by the adrenal glands, and it’s a mechanism which can, and does, malfunction.

That, until proven otherwise, seems to be the most likely cause, especially as hypothalamic malfunction can be caused by my old friend, malnutrition.

So, anyway, as ME does seem to be a factor in this, albeit indirectly, it makes sense for me to revert to my supplements which, for much of the past 27 years have kept me on my feet when all else failed. These are based around a foundation of vitamin E and Siberian Ginseng, cheaper than Chinese or Korean (Panax Ginseng), and, for me, just as effective.

The daily dose details:-

For M.E.:-

Siberian Ginseng, 600mg

Vitamin E, 400i.u.

I was taking ginseng and vitamin E back in the seventies, as a tonic on backpacking trips. I always feel bad when I run out or forget to take them**, and better when I get more; QED –  they work. Or, at least, they work for me. No guarantees – sorry.

** Feeling bad when I run out could be psychological (it’s not, but bear with me), but feeling bad when I forget to take them is clearly a physiological reaction.

Magnesium, 600mg, good for muscle problems and for urge incontinence.

Zinc, 30mg, which is very good for the mouth ulcer problem in ME.

These have all passed my personal Placebo Effect test** (See footnote), and stood the test of time. In addition there are a few more that aren’t related to ME:-

Vitamin D3, 5,000 i.u. This is usually created by the effect of sunlight on skin. As I’m housebound, I take these instead.

Potassium, currently 100mg, it stabilises my heart, smoothing out arrhythmias and reducing its tendency to tachycardia. The hospital doc suggested eating bananas – high in potassium – but I prefer something more accurate and predictable. I can go up to 200mg at times.

Finally, I have two supplements to counter deficiencies caused by my medication:-

Vitamin B6,100-200mg. Aminophylline (Phyllocontin Continus), causes B6 deficiency. This, in turn, messes with the serotonin re-uptake mechanism, causing depression. Supplementing with B6 is a better fix than drugs.

Finally, we have vitamin B12. This is because my Proton Pump Inhibitor drug impairs B12 absorption, and several others cause deficiency.

All of these I’m in the process of reintroducing, gradually, as I’m still extremely weak, and my meds have changed substantially since I last took them, so I don’t want to shovel them in all at once. They’ll be introduced one at a time over the course of the coming week (I’m already taking zinc and B6), so if there’s any conflict with my new meds, the culprit will be easily identifiable.

To round off the mix I also take a daily 1,000mg of soluble vitamin C, and a decent multi-vitamin and mineral supplement (in which case I reduce the zinc to 15mg)


** Over the years, many supplements have come and gone, failing my placebo effect test.

I always take 2 month’s worth of a new supplement. The first month I see what happens, and note any beneficial effects. Then I wait a month, before buying more. If this second batch doesn’t repeat the success of the first (always assuming the first did anything at all), then I assume that the first batch just triggered a placebo response and don’t buy any more. Works for me.


6 thoughts on “Addendum to I’ve been lied to…

  1. Keep on striving Ron, I’m never failed to be amazed at how many of us with various ‘ailments’ develop such a level of expertise. All best as always x

    • I believe very strongly that anyone who is chronically ill owes it to themselves to know as much as possible about their illness and its treatment. Knowing more than your GP isn’t hard as by their nature they know a little about a lot of conditions.

      Aim to know as much as your consultant, at least. It can be hard work (hell of a lot harder when I was young – no Web!), but it’s in your own interests. And it can bring its own rewards – I was invited to join the Wellsphere network based on the high quality of my work on COPD on this blog, and my willingness to share what I know (information has little value unless it’s shared).

  2. Banana a day works as less chemical alternatives for potassium..loads liquid…veggie diet…no more fatty foods and red meat of former days…music on tap best medicine…just keep on trucking Ron…play loads music ….

    • Bananas, for me, would be a logistical nightmare, plus the fact that I’m not overly fond of them. Tablets, on the other hand, are neat and tidy, don’t need to be left to ripen, and don’t go off. Above all, I get an accurate and predictable dose, which I suspect is much higher than the content of a banana.

      I was a veggie for about 20 years but, these days, my diet is about 50% veggie, and I tend to eat fish more than meat, in dishes like this one which is spiced with paprika and ground coriander.

      And there’s always music – right now it’s the Dixie Chicks album “Home” shortly to be followed by lots of Emmylou Harris and Gram Parsons.

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