So, my own war on personal terror finally started two days ago – and this one isn’t phony. I really do have evidence of Weapons of Mass Destruction inside me: a descent from the milder forms of ME/CFS for 12 years into (now) complete bed-boundness over 9 months; permanent unilateral inner ear hearing loss; gastric disorders I never dreamed could hit me so hard; seemingly complete loss of restful (delta? stage four?) sleep; and the loss of 6 stone in weight (84 pounds, 38 kg) since October. I imagine teams of little white-coated UN inspectors inside my gut ticking their clipboards, packing their bags and getting their hats: “Yep, OK. This time there’s evidence”. Not so much a smoking gun as repeated chemical attacks: enough to take some kind of action, surely?
My NHS doctor’s reaction over the phone? “Well, if you’re too ill to come in, what’s the point in me booking you an appointment with a GI specialist?”. It’s a very strange thing to be able to hear a shrug over the phone.
When you’re well, you don’t imagine, particularly in the UK, that if you got this ill doctors wouldn’t rally to find out what to do, try things, do a little more than a few standard tests and say “nope, you’re not going to die” and send you home. You imagine broken legs, and “Carry on Doctor”, or high temperatures and stethoscopes; or if you’re morbid you think of those cardiac arrest doodahs and beeping monitors. But nope: suddenly losing 6 stone in 9 months or permanent cochlear damage doesn’t seem to perturb doctors in the UK, if somewhere on your medical record the words “chronic fatigue” appear. It’s like having the Joker in card games: because it can stand for anything, it belongs nowhere; when symptoms are mild, it can be classed as “possibly psychosomatic” in hushed tones; when suddenly dramatic, their undefined class of illness “CFS” can be used to account for every symptom with a sympathetic shake of the head and “what can you do?” look.
I’ll try to leave the rest of that anger behind now, as the point of this entry wasn’t that: it was to try and use a possibly brief spurt of energy to say something about where I am physically. This is entirely selfish, as I’m so exhausted I’m finding email correspondence extremely hard work, and I can always point you here instead can’t I? I know it’s going to seem terribly rude when I do, but needs must.
Just before I dive in, I want to say something on behalf of me and all those with chronic disease: how unfair it is that we, unlike others, have to fill our weblogs with entries like this. They’re interminably boring to the well, and we know it. It’s unjust that we don’t have parties, and drunken yachting incidents to blog about. We don’t do it because we’re obsessed with our illnesses – we find them as boring as you when we get a little better. We do it because this is our lives when things are really tough, and we’ve found succour from others whose lives are flat-ironed by the same experiences. We do it because we’ve found information in similar articles that has helped us, we do it because we just want it said out loud. The rest of this entry will have little interest for the average reader, so I’ll draw a curtain around it for you to skip if you need to. But you’ll miss my terribly deep insight into the human psyche at the end if you do.
This is already feeling barely coherent, so please stick with me if you want to ask “how are you?” (kind people). Here’s an answer.
In a dreadful entry, shockingly as long ago as April, I see that I mentioned a parasite I’d been diagnosed with – it’s called Blastocystis Hominis and I’ve only finally now got to the stage where I’ve started bombing it. This was diagnosed via private testing by my private specialist needless to say – a test conducted by the London School of Hygeine and Tropical Medicine. “Parasite” sounds scary and makes you think of creepy hairy legs and worms, but this one’s tiny, has lots of friends, and lives in the bits of your body you wouldn’t want to live in. Probably because it has to live there, it gets angry at its lot, and can cause havoc. The conventional view tends to be that Blasto generally causes no harm, except in “immuno-compromised people” – meaning AIDS patients, and similarly unfortunate patients. Thus the NHS, the UK’s national health service, have no wish whatsoever to test for it, and should they find it by mistake will put their fingers in their ear and sing loudly “lalalalala” until you go away. The “immuno-compromised” bit is where that Joker above comes in – people with ME/CFS aren’t really ill, just a bit off-colour, so clearly the Blasto can’t do any harm, and some other mysterious agent X must be causing their odd symptoms: in all likelihood, they just managed to think away those 6 stone: they’re often as good as that Paul McKenna on TV you know, or that bloke in the glass box suspended over the Thames. Oh wait, he didn’t actually eat.
Many other sites, papers and doctors disagree with this view, including my own private doctor, and probably the most informative place to go is the BadBugs site, run by Jackie in Australia. She’s not a qualified doctor, but cares enough because of her own disastrous experiences with such parasites to compile as much information as she can on symptoms, treatment and mismanagement to try and rid those whose lives have been blighted by these little monsters. I’m hoping I’m one of those now.
Here’s why: because when you get so much iller, so quickly, you need to know why. It’s such a shock to see your own independence disappear so quickly, your future career look so doubtful that you can’t see a way you’re going to be employed again, your inability to go upstairs and watch TV, or outside to see a tree, the loss of friends, sleep, food you enjoy, and the thought that you will never again “go on holiday” or “go to the cinema”. This smacks a little of desperation doesn’t it? Scapegoating an organism you’ve never seen because of citations on the web, that your conventional doctor who gets paid more than you ever did because you pay taxes knows nothing about (“never heard of it” was the phrase used).
I mentioned, I think, somewhere in this mess of a weblog, that my private doctor thought it entirely plausible that this parasite is causing my repeated diarrhoea, wildly painful stomach cramps, and reduction from ME-person getting by to lump of jelly, and prescribed a couple of drugs which she’s had success with: paromycin, also called paromomycin and humantin, and doxycycline – two antibiotics. I’m including the alternative drug names as I’m surprised how many people find this site searching for information on drugs, but it goes without saying that I’m not recommending any treatment here. I may also have mentioned my fears about paromycin: it’s from a family of antibiotics that can cause permanent hearing loss, and for obvious reasons therefore terrifying to me. It took months and months to get a view from an ENT specialist who hummed a lot and leafed through a booklet, and took ages to get back to us with his view that it was probably ok. Probably being not good enough, because I always seem to fall into the smallprint of “incredibly rare side-effects only leprechauns and faeries get”, I asked questions on mailing lists, spent days of real-time trying to find out for myself alternative treatments, and found websites like Jackie’s. My partner went through a ton of information, and we eventually settled on the combination of an anti-parasite drug called Nitazoxanide (Alinia, Daxon) combined with an antibiotic called Rifaximin (Xifaxan) as the nearest thing to a best bet. My specialist said “ok”, we discussed dosage and length of treatment based on papers we’d found, and she approved.
It wasn’t over. Blastocystis Hominis and similar parasites are notoriously difficult to kill, and no drug has 100% success rate – I corresponded with someone who had tried 6 separate regimes, and it was still inside her, having a party and spilling beer on the carpets. When they sense attack, they turn into cysts and cling to your colon wall, like limpets. There’s evidence that they build resistance to antibiotics, so you have to hit them hard first time. There’s a mass of anecdotal hints about how to increase the effectiveness of your drugs, by taking Lipozyme (a fat-splitting enzyme) to hurt the little bastards’ cyst-y fatty shells, and taking Pysillium (a soluble plant fibre) to help the drugs get ‘em and keep you moving inside. Much more agonising over possible side-effects, pros, cons. And then the dreaded debating over purging first with Picosulfate.
It still wasn’t over. You can’t get these drugs in the UK, so we had to ring the US for the Nitaz, who made us ring Belgium. Same with the Rifax, made in Italy, procured from Germany – all formally, via my physician. We had to decide on doses: the Nitaz manufacturers recommend 500mg twice daily for 3 days, and most accounts out there say 1000mg twice daily for up to 14-21 days for Blastocystis will still only maybe kill it. Similar debates ensued about Rifax dosage and duration. Agonising about whether to add a third drug, Furazlidone, which is supposed to again increase effectiveness, but time just ran out: by a month ago my gastric problems were so chronic and painful my stomach cramps had turned permanent, and just so ill I couldn’t get out of bed for half an hour without repercussions for days.
The total bill I think came to about 800 euros or more: but I’m not looking as I don’t want to scare myself. The drugs arrived last week. On Sunday I took the supposedly innocuous two teaspoonfuls of Picosulfate and Monday was hell on earth: it’s supposed to take 6-12 hours, took 15 on me, was very painful, and lasted another 15 hours. First horrors over, onto the drugs. On Tuesday I chickened out and took half a dose, and yesterday the full dose:
12:50pm: glass of water filled with 1 teaspoonful of Psyllium husks (yuck)
1pm: 2x500mg Nitazoxanide, 3x 200mg Rifaximin, 1 Lipozyme capsule, with food
8pm: 3x 200mg Rifaximin, with food
12am: 2x500mg Nitazoxanide, 3x 200mg Rifaximin with food
I’m adding these details for those who’ve come here specifically to search for Blasto treatment: the rest of you can stand behind the curtain and talk to the nurse, and will probably specifically want to for the next paragraph.
Yesterday I felt surprisingly good – you can never predict what drugs will do to someone with ME/CFS, and most descends to folklore: that you will feel remarkably better on antibiotics and this proves it’s really Lyme disease/Borreliosis/a hidden virus; that the antibiotics caused it in the first place and you’re insane because you’ll kill of your body’s remaining friendly bacteria (hint: take probiotics afterwards); or that you’ll feel absolutely terrible, because the dying organisms will release toxins into your body (“die-off”, “herxing”). The latter school maintain that if the drugs hurt, they’re working. I’m pretty sure it was the Psyllium, a harmless little plant thing that did the good yesterday, as, how can I put it, something started happening that was only happening once every two weeks before. With other strange anti-gravity effects that I’m too bashful to describe. Private communications only.
So was I supposed to be pleased I felt ok yesterday, or disappointed I wasn’t in agony as it meant 800 euros and 4 months’ hope were being wasted? Today has solved (complicated?) that dilemma, as I’ve woken up after 4 hours’ sleep to feeling dreadful: extreme ME-like symptoms of muscle ache, fluey malaise, and poisoned system feeling, and the strangest pains in my pelvis and lower legs, quite dissimilar from the ME/CFS muscular aches, like internal bruising; almost as if I’d slipped on ice yesterday and broken something. At 3am on my left hand side – now on both. It’s amazing how subtly infinite different types of muscle pain can be: with ME you become a gourmet at defining each type. I purposefully didn’t read the symptom sheet before (shades of being accused of hyperchondria) but guess what? It turns out pelvic pain is an “incredibly rare you-won’t-get this” side-effect, as indeed are pains all over – which are appearing at the oddest places: half way up one forearm, a shoulder. Yes, the leprachaun effect: whatever side-effects you’ve got, I’ll have one please. The reason I’m typing this now is testament to the effect of prescription-only 60mg codeine plus paracetamol tablets, my one thing I can be grateful to the NHS for after 12 years of ME/CFS. It’s taken the edge off enough to sit up and type.
My partner’s read that the pain, the malaise, the high temperature and illness caused by the Nitaz may be “transient”: I hope to goodness. I have set my sights on 14 days or more of this, as per papers cited for AIDS patients. I have to be able to get through this. My wish-fulfillment hopes:
That my crash from 12 years of just-getting-by with ME was caused by Blasto, or a hidden parasite riding on the back of it;
That the drugs will work;
That once I’m rid of it, my strength, muscles, ability will return;
That I’ll get back to where I was: ill, but capable of outside life;
That it’ll be in time to retain some elements of my previous existence.
My not-a-chance dreams:
That my hearing, which disappeared on the same weekend as the gastric crash from health occurred, will return to normal;
That most (all!) my ME/CFS symptoms are caused by a parasitic component and I’ll be a well person.
That the drugs won’t kill it, and I’ll embark on 12 months of deadly antibiotic and anti-parasitic drugs, at huge cost to wallet and health;
That Blasto’s irrelevant and when gone, I’ll still be as ill, and not find out why;
That the expensive imported drugs will give me… cancer.
That last fear’s a reflection of the fact that you feel like a naughty school kid looking up drugs on the internet, finding private doctors, importing drugs that your local GP sniffs at and has never heard of. Britain really is a ridiculous place: unending obsequiousness towards anyone in the medical profession seems to be weaved into our DNA, and if you dare to actually look anything up on “The Internet”, you’re self-prescribing. And you will pay for your lack of respect with pestilence and disease.
I’m going to try and end this, which must be my longest most selfish entry, with something about hope, because someone close to me, also with M.E. said to me when I was at my lowest, that she needed 1% of hope from me, even if the other 99% was complete despair. At the time I couldn’t give it to her: hope is so scary, and for me has always led to terror when it turns out to be false. Well, this entry’s my 1%; my 10%, my 30% – because you have to roll the dice sometime, and I guess this is my roll. Please, if anyone got this far, expect little from me for the next 2 weeks, but hope a little with me during that time, if I can tolerate the drugs. I’ve always tried to find a balance between the heartbreak that constantly dashed hope can bring, and the resilience of belief in a better future. At 4am two mornings ago, trying to sleep with the radio on, I heard a quote from Antonio Gramsci that cast a thin shaft on light on how to survive as a self-preserving skeptic:
Pessimism of the intellect, optimism of the will.
So – the drug’s won’t work; the drugs will work. I won’t get better; I will get better. A hostage to fortune, but you watch me.