Thursday, July 28 2005
War on Terror
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
11:50pm: Psyllium 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.
Posted by honey at July 28, 2005 8:36 PM
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I remain, as always, optimistic for you :)
Posted by: highrise at July 28, 2005 10:16 PM
Remember...Ice for your lower back...alien though frozen cubes of water are for you over there.
The good thing is that you've chosen a weapon and declared war...I'm proud of you. Keep hoping and don't forget that things are a little trickier with a triple helix, but not impossible.
Posted by: Michele at July 29, 2005 2:45 AM
This is taken completely out of context but fits nicely here -- Gramsci also wrote, "...one can and therefore must be one's own doctor." You may borrow a percent or two of hope from me, if you like. xo
Posted by: Damon at July 29, 2005 3:37 AM
...You would think now hope would be tired but it's alright
You would think tired, ragged and oil-brown
but it's alright..."
Please Honey, have some of my hope.
Posted by: ulla at July 29, 2005 5:31 AM
Best of luck that the meds work and you recover somewhat!
Posted by: catbiscuit at July 29, 2005 5:23 PM
I will be thinking of you and hoping for you.
I hear a lot of nasty stories about UK doctors. Curiously, I know of an Australian doctor whose experience in the UK distrubed him: the obsequiosness(damn I wish I could spell) of patients frightened him. Especially when he would suggest that although the standard tests were normal, he'd like to run a further one just in case - 'oh thankyou so much doctor but I don't want to trouble you'.
From this I assume that doctors raised in that culture really do expect a high level of gratitude for very little effort. Which would help explain why the UK is so behind in ME/CFIDS - ME people have been backed into a corner where submissive gratitude gets them nowhere, doctors are bothered by their comparative rebelliousness (it must be like be savaged by a sheep) and cannot see past the ingratitude.
Posted by: splodgenoodles at July 29, 2005 5:25 PM
Thanks so much everyone for being kind, and I'm sorry I so often have to communicate via a weblog - exhaustion - which must be so mystifying for you when there are patently unanwered emails from you in my mailbox. Like Michele keeps reminding me, I probably do have triple-helix DNA or something - the only explanation for picking up every side-effect known to humankind. Apart from with benzos, mother's little helper, which do help mother a little, and don't seem to hurt.
And Splodge. Your analysis of the UK attitude to the medical profession hits the bulls-eye - I've even found myself, fired up with 12 years' of inaction (I'm not looking for a cure - but some will to explore would be nice) walking into my GPs office determined and 30 minutes later at home thinking "what did I come back with?" and being so angry with myself I could cry. Wondering why I didn't rant and rage, but knowing that part of that just refuels the incessant circle of unsaid assumptions that "M.E. patients are difficult, poor souls". I don't know where this comes from, but it's in the UK psyche.
The UK is miles behind, which makes it all the odder that two independent research establishments, Dr Gow in Glasgow and Dr Kerr in London are independently suddenly claiming breakthroughs in gene expression, definitive biological markers, and (deep breath and whisper) "possible future cures". So many little shafts of light all the time.
Damon - I'll continue to try. My GP would probably be happier if I wrote my own prescriptions. Vicky, does your optimism stretch far enough to promising me I will be able to eat chocolate at Xmas? Ulla - I hadn't even thought of that most beautiful of songs - and so often hope has been gone - but yes, that exactly where I'm trying to be now. As they say in another song (in every song):
You won't, you will not give into despair,
(you start your car) it's everywhere
but in your heart.
- Innocence Mission - "She May Turn Around"
I think this ancient weblog entry says a lot of how I, a heathen, have felt about their music almost longer than anyone else's. I'm going to listen to them now.
Michele - I'll fill the fridge. x
Posted by: honey at July 29, 2005 5:39 PM
Oh dear, this sounds sooooo frustrating, but hats off for accummulating as much knowledge as poss about all the drugs etc. Stay strong missus! I had no idea that there were antibiotics that could cause hearing loss. How shocking.
Can I just be rather intrusive though and ask about the Psyllium husks? If you have Pedigree Chum Bum then I would have thought that it's not a great thing to take, as I think it's more for constipation. Sorry, I don't know much but I do know about poo-based misery (but of the opposite nature to your own).
Posted by: Kellie at August 1, 2005 9:20 AM
Just want to say thanks for continuing your brilliant blog and that yes, I am still reading it, although not able to keep my own blog current as I've been at my worst the last 4 months. Have started clonazepam (after months of zolpidem didn't really help, although I'm still taking it). It's early days but sleep has improved. Still on the Marshall Protocol due to doctor and test results but obviously, no improvements only worsening. Been referred to another (lucky number 13?) doc in a couple of weeks whose supposed to be *the* CFS expert. Well my doc who referred me is supposed an CFS expert himself, so does it make the new one twice as good? Sorry for hijacking your post with an entry but I am glad you're posting.
Posted by: paperboy at August 2, 2005 5:34 AM
Hi I also have blastocystis, I am trying to treat this myself. I have been trying to treat this for nearly 1 yr now. I started with herbs and now I am finally trying similar drugs to yourself. Not sure whether this helps but I also had/have some candida and bacterial dysbiosis. Between the 3 of them I suffered mutiple allergies and fatigue although not as servere as yourself. Since I was 10 I have had allergies but because of something else this enables me now to quickly recognise the cause. Not sure if this helps you but as you know certainly all the sugars etc from maltodextrin and anything ending ose is a no no. But I also found carbohydrates and fibre in the form of beans, grains, and powder/seed supplements (psyllium inc) caused me very to have a very odd almost weak and uncomfortable feeling in my pelvic area and thighs. I also started to suffer from AS in the lower back. However since cutting these out and following a similar diet to SCD these issues have been alliviated greatly. It is very useful to hear someone elses story, I hope things are improving for you. I am taking the triple drug route in the near future if you are interested I will let you know how I get on. Please let me know if you are interested in anything else
Posted by: Phil Allen at August 6, 2005 7:52 AM
Sorry I'm slow at reply everyone... it's a bit of a rollercoaster ride. I will try and update when I have the physical and emotional energy...
Kellie - thanks for the advice, but I get both problems quite dramatically. I've subsequently heard the same too about Psyllium and your lovely doggy metaphor, and then heard the opposite again! The source that suggested I take it suggested it'll block me up. So my pseudo-scientific explanation has to be that it bulks you up but makes you softer (I can't get any more specific than thus, or you'll feel sick and I'll cry) and therefore can do both. My solution a typical (bad?) compromise: take one instead of two or zero glasses a day. It's like drinking wallpaper paste.
Caleb it's really good to hear from you, I noted your silence on your blog and wondered if it was because of bad news or rollerskating - so sorry to hear it's the former. I've done the clonazepam route too (is it just for sleep or anxiety too?) but am back on diazepam now - I don't believe either really help my sleep, which is now in the sleep-30-mins-wake-with-nightmares-repeat state and ever worsening - every night lasts a thousand years. But I know benzos do seem to help a lot of people with sleep so good luck (and be careful coming off if you do - I tapered, it seemed fine, but with hindsight I think they caused severe short-lived depression). I'm really sorry you've been so ill - all I can say is same here.
Phil, it's really nice you popped in..! As I said in the entry, I thought maybe people would find me via search engines for Blastocystis, which makes me happy it was worth it if you did too. It's probably my ME/CFS brainfog, but the meanings of "AS" and "SCD" escape - but no, matter, I'm pleased someone else fighting Blasto popped in. If you feel like sharing your triple-drug treatment here (so other Googlers can see?) please do, and the very best with it. I'm still in the middle of my treatment, but my M.E. is very bad just now - will contact you or post a new entry with progress when I can. Feel very free to email me privately too if you want - I'll just be slow.
Posted by: honey at August 6, 2005 4:35 PM
Thinking of you & hoping all is well as you haven't been in evidence for a few days. Sending you thoughts of lovely things such as being Kate Beckinsale in Underworld, tight leather suit and all. Remember the voyage to the top of the road?
"A business tycoon" - Cough! Splutter!
Posted by: "All grown up" at August 12, 2005 10:25 AM
Hey, I stumbled across your blog whilst fooling around with audioscrobbler about half an hour ago. I have been captivated by this entry since then- may I offer my deepest sympathies on what appears to be a nightmarish condition, and also commend your delightful writing style. Thank you.
Posted by: Ricky at August 15, 2005 8:19 PM
Sorry to hear that you have this too. I have been battling Blasto for 4 yrs myself with no lasting results. I also just found out that I have lyme disease, as well as the coinfections of Bartonella, Mycoplasmas, and Babesia that are carried by the infecting tick. No wonder that I haven't been able to get rid of Blasto. I am trying a combo of Humatin,Yodoxin, and Candibactin BR right now. It's suppose to work well. I use to visit the badbugs site, but there is some mis information there.
There haven't been many successes with the combo that you are trying. Good luck with it.
Posted by: Robert at August 22, 2005 7:04 PM
Ricky and Robert, thanks for your thoughts - kind of you to take the time to comment. To all, I'm sorry I haven't updated - it's been a rollercoaster, with things currently not great. I'll try when I can.
Robert, I'm obviously very concerned about your suggestion that the badbugs site carries misinformation, and that the drugs I took aren't likely to work. Although things don't feel too great just now. Jackie from badbugs has been very helpful to me and well-informed, so could you clarify what you mean please? And preferably cite alternated sources showing the ineffectiveness of my drug combo and specify where you think the misinformation lies? Thanks.
Posted by: honey at August 29, 2005 4:40 PM
Hello. I was just wondering how everything turned out? Did the drugs that you took do the job, and are you feeling better now? It all sounds so horrible!
Posted by: Rose at February 22, 2006 2:42 AM
Hello, I just stumbled across your blog. First let me say, that your writing style is excellent and sums up this problem so well.
Secondly, did the combo of drugs you took every eradicate your dysbiosis?
I also have blasto and am on a strong dose of the paromycin and doxycycline... I hope that I don't get hearing loss. I checked for side effects of paromycin (the alternate spelling of paromomycin and have never come across that side effect. I may ask my doctor about that now). Don't know who your private doctor is. Mine is Sarah Myhill. I think she is very competent. She put me on the standard dose of this combo last year and it worked fine but when I came off it the bug came back. Thus we are trying a stronger dose for longer.
If that fails, I also have been in touch with Jackie from badbugs and would try the triple therapy that an Australian clinic recommends.
I have tried many other things to get rid of this myself and they just haven't works. I've had this for about 4 years now and I'm sick of it. I want to feel normal again. Hope you are better.
Thanks again for posting this.
Posted by: Alexa at June 16, 2006 11:32 PM
Hi honey. Just wondering how you are doing now? Did the Rif/NTZ combo work for you, or did you try something else?
Posted by: Robert at October 7, 2006 4:41 AM
Hi Robert and (gulp) Rose and Alexa, if by chance you come by again. I suppose the reason I've never updated this entry is because I still feel I don't have anything conclusive to say... I still want to add "yet". The immediate aftermath of the antibiotics was some stumbling improvements over the course of the drugs, followed by another test fairly soon afterwards (negative for Blastocystis Hominis, hurrah, but only speculative as you're supposed to wait a few months), then a gradual lessening of symptoms, more hurrahs, and even daring some chocolate at Christmas, as excellently predicted by Vicky above. The slivers of chocolate, or Xmas excitement (2 days upstairs watching Christmas telly! I nearly felt like a normal person!) lasted a few days as New Year dumped me back into a return of gastric symptoms.- Not so bad, but enough to convince me that sugar wasn't good for my stomach still.
Since then - well I decided to finish the ultra-exclusion diets, and it didn't seem to have much effect except increase my weight somewhat - which was good. Things are not as bad as 2005, but they aren't great either, and the latter part of 2006 I'm feeling a return of bouts of gastric nastiness - they seem very periodic, and I've tried to diary them and relate them to food, or stress, mental or physical, and the results are inconclusive: meaning I find no obvious correlation.
At some point I'll seek a re-test for Blasto, or whatever else may be lurking: I'm waiting for a bad enough attack at the right time in the week to send off a sample, which is actually quite tricky! It's hard to timescale your body's demise.
All this is specific to gastric problems, which I guess you're most interested in. With respect to my more general condition, the ME symptoms continue, and definitely get worse when I have gastric flare-ups (bed-bound, sometimes unable to sit up for hours etc.). I've been to a gastro consultant, and just got the usual line about IBS, and I could try low dose antidepressants (the idea being that they inhibit nasty brain/gut interaction), which I explained I've tried a whole lot of them a lot. Other than that, they want to stick a tube up my bum, but as I was told that they didn't expect to find anything unusual, and they seem incapable of scheduling appointments for anything other than 9am, which is likely to kill me flat for weeks, I haven't been able to do this yet.
I'd be extremely interested of how any of you are getting on. If my gastric problems continue to worsen again, I'll re-test, and if Blasto is found again, I might try the Australian 3-drug treatment next. But I hate this: it's like pottering around in a garage with a broken car. Who knows if Blastocystis really is causing this? I've been convinced over the last two years that my very serious debilitating relapse has gastric problems at its core, which coincided so exactly with hearing loss in my case: but no-one wants to (hoho) listen.
Posted by: honey at October 14, 2006 12:06 PM
Well, how about that. I was wondering what had happened to you. It's good to see that you are able to respond again. Could it be that the drugs did get rid of the Blasto? How long was it after the drugs that you tested for it and it came up negative?
I did the Humatin + Iodoquinol the last time, and it failed. So I am doing some more combos back to back at the moment. It just doesn't seem like anything works after using it once and failing. It sure would be nice to be able to put an end to this chapter in my life!
Posted by: Robert at October 20, 2006 5:27 PM
It's now almost 4 years since your last posted entry. Found your writing to be very courageous and, if not for the seriousness and desperation of your condition, extremely witty and good natured. I have a similar story with loss of hearing and a subsequent GI horror show, tumbling down the rabbit hole to bedridden illness. Mine started with a large dose of potassium iodine which some inept alternative quack prescribed for a nonexistent thyroid condition. The first dose I had a lot of energy; by the second dose I felt what I can only describe as a shotgun blast inside my head, followed by extreme vertigo and total deafness. These 2 things subsided slowly after a couple of weeks but I was beset by the worst upper respiratory infection that I have ever had. This went on for a month, then an adrenal crash, then heart problems, severe gut problems, insane insomnia, feeling poisoned now all the time and unable to get out of the house, or many days out of bed. Have finally found that I have blastocystis and some other bacterial overgrowth in the intestines as yet to be defined. Waiting for the results of the Metametrix DNA test to confirm drug/herbal sensitivities as I do not wish to experiment with my health at this point and have big liver issues. My immunoglobulins have pancaked and I am now on IMIG but may need to go to IVIG. Also, the IGGs do not touch the parasite but will help with other viral and bacterial issues. Just for a cosmic laugh, I went smack into menopause as this was all unfolding so now have the horrors of no hormones to deal with and cannot take even bio-identical HRT because my gut/liver is such a mess. Oh, and now I have toxic metals as well; lead, cadmium and antimony - some arsenic too. I am about to embark on Alinia and one other abx as yet to be determined. I will let you know how it goes. I do sincerely HOPE that in the last few intervening years you have found some path to wellness and joyful living. Sending best wishes and a bushel of good cheer :)
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