Submitted by boadicea on Mon, 2014-06-09 09:20

I tend to be a bit reluctant to shout out about improvements too loudly, because, whenever I do, those improvements seem to become shy and bashful and then disappear again the next day – but I feel as though it’s time for an update.They do say that time flies when you’re having fun – well, I certainly can’t believe that it’s now over 3 years since I started on this journey.  I would never have thought that possible, when I started.   It’s not been easy, and not been anything I could have imagined or really been prepared for beforehand, but the glimmers along the way have kept me going.  And, in the last few months, there have been moments when those glimmers have been shining so brightly that you almost need to reach for the sunglasses!I’ve now done 5 metronidazole pulses – the first was one day (2 tablets) and the second and third were two days (4 tablets), then three days (6 tablets) and, last time, back to 3 tablets, because the effects of the 6 tablets were too debilitating.  I’m very much being the tortoise in this race, taking things slowly.  And yes, I do get fed-up with it sometimes, when it feels as though everyone else is so much better at this than I am.  But after my previous attempts with tinidazole, I’m not sure I really believed I’d ever reach the point where I could pulse.  I would have been content to continue forever with the bacteriostatics, as I was getting lots of die-off with those.  So I’m completely thrilled to bits about being able to tolerate metronidazole.  I’ve no idea whether it’s taking metronidazole instead of tinidazole which is making the difference, or whether it’s because I’m a year further along and my body is now ready for this.  Whichever, it doesn’t really matter – the important thing is that I’m managing to take it.I thought I was starting to get used to the pattern of things, but it doesn’t seem to like us to get too comfortable, so, just when I was starting to relax, the pattern changes.  I find that the effects of the metronidazole seem to hit about day 7 to day 14.  At the time of taking it, I tend to get lots of shivering and fatigue, but I could easily be tempted to keep on taking it for more days, absolutely convinced that I can handle it.  I have to keep reminding myself that I’ll likely regret it a week or so later.  It then tends to be ‘another day, another symptom’, with old symptoms being revisited, sometimes one after another, sometimes overlapping.  Completely bewildering, but at the same time reassuring, as though each symptom, some long forgotten, is shouting ‘yes, I was Cpn too!’.Since starting the metronidazole in February, there’s been lots of die-off and inflammation in my brain, neck, spine, left hip, sinuses, left lung, right ear. Lots of episodes of blurred vision.  Also, a hand injury from about 30 years ago cropped up again, a foot injury from about 20 years ago and a neck injury from 15 years ago – exactly in the same way as when they happened.  Weird!  I’ve had lots of burning in my hands and feet, and involuntary twitching in my legs.  And feet feeling as though they are in blocks of concrete.  And more loss of function/increased weakness in arms and legs.  Lots of pains.  Pretty much constant shivering, which I assume is cytokines.  Fatigue (sometimes completely debilitating).  Nausea (especially on waking), which I assume is toxins.  And the porphyria continues to crop up – but, whilst it used to be constant, with no relief at all, the worst of it now seems to resolve in a week or so.  Loads of carbs still needed at times, and I seem to have about 2 or 3 weeks each month when I can’t even think about eating salad – but ice cream definitely helps at those times!I had just started to get very excited that, whilst all the die-off and symptoms had been going on, I’d still been able to function, in a way I’d not been able to do before.  And I was getting the occasional day or two of feeling completely ‘normal’, which I’ve not felt for so many years.  But, after the 6 tablets of metronidazole (about day 21 after), I was completely overwhelmed by porphyria, toxins, inflammation and fatigue – it was as though someone had switched the switch off and I just couldn’t function and felt very poorly.  All a bit annoying, because I’d so much hoped that maybe the worst was over!It does seem as though the pattern is still following the graph I draw last year – very up and down.  I don’t seem to improve without becoming as poorly as ever first.  But, each time things improve, they tend to be a bit better than the time before.  So I really can’t complain about the bad bits too much, if they’re necessary for improvement.  I do find it a bit relentless sometimes though, and the more things improve, and I have glimpses of being able to do things whilst feeling well, the more I want to feel like that all the time.  I think that’s one of the most bewildering things about CAP – the expectation with most treatments is that you ‘take the tablets’, gradually start to feel more well, and are gradually able to do more as a result of feeling more well.  But this is nothing like that.  There’s nothing linear about it, with it being so up and down and backwards and forwards.  I’m certainly finding it a different experience to anything I could have imagined before starting.I’d say that, in general, in the good bits, 3 years on CAP have put me back to where I was about 6 years ago.  And I feel as though I’m following pretty much the same route as I followed to get so ill, but in reverse.  I’ve been able to do things I’ve not done for at least 6 years.  And, in the past 3 or 4 months, I’ve been more able to do everyday tasks, (showering, dressing, tidying the house) without them being the enormous insurmountable effort that I’ve found them to be in the past.  In one of my better moments – those glimmers - I went to a conference - it was only half a day, but I’ve not been able to do something like that for at least 6 years, and even then, it used to be a huge effort, which I always paid a great price for afterwards.  This time it wasn’t an effort.  And I was able to completely be myself, rather than having to focus on just trying to give the illusion of being OK, as I used to do.  I sang at all 4 services in Holy Week/Easter – on Thursday and Friday I felt fine, but on Saturday I was in bed all day, shivering and with porphyria, got up about 6pm, had a bath in Epsom Salts, got myself sorted, took loads of painkillers, and then went to sing at a service which was over 2 hours long!  Not how I would have chosen to do it, but I couldn’t have done that at Christmas, when I missed out completely.  Oh, and on my Birthday a couple of months ago, I think I felt more OK than I’ve felt on the last 25 birthdays!I had about a couple of months of going back to choir rehearsals, as we were rehearsing for a concert.  At first, I felt as though I was just going through the motions, because the cognitive problems were still so great – dyslexia with words, music notes, and generally being overwhelmed at trying to put both together at the same time.  I was quite good at pretending that I knew what I was doing!  Over those couple of months though, lots of progress was made and it was all starting to become far more fluent and natural again.  Brain and body, starting to communicate!!!  The disappointment was that, after the weeks of going to rehearsals and feeling relatively OK, by the time of the concert I was in the midst of a bad bit again (porphyria, mainly).  I’d tried to time the metronidazole so that I might be in a ‘good’ bit, but that didn’t make any difference.  Nothing was going to stop me doing that concert though – I’m not sure how to explain, but I’d not sang in a concert like that one for about 6 years, and I knew that being able to do it would somehow make a bit of sense of what I’ve been going through with CAP for the past 3 years.  So I did it, which is pretty amazing, considering how things have been.  But I was disappointed that I didn’t have the opportunity to do it whilst feeling OK.  Next time, perhaps, hopefully...  Though I’m having to have a bit of a break from choir again at the moment, as I’ve not been consistently OK enough to go since.With my walking, there have been various glimmers in the past year or so, when I could walk short distances without using the crutch, but they never lasted for long.  And there have been lots of phases when my walking has been loads worse or pretty much impossible.  The improvement in the last few months though, has been so spectacular that I’m often left thinking I must have dreamt it.  I’ve gradually felt I was relying less on the crutch when I was out, and have sometimes felt OK walking without it.  There have been occasional days when I’ve been able to walk as though there’s never been anything wrong with me at all.  Honestly – it’s completely unbelievable that such improvement in walking can come about – and especially how it seems to come when you’re not really looking for it, because you’re not especially feeling well at the time.   I’m better at walking in a straight line than if I need to turn corners – it feels as though a different bit of the brain is responsible for that.  My position sense is still not great – I still have an especial talent for walking into things, even though I know they are there, such as the doorframe.  I’m realising, though, how helpful being able to swing your arms is when walking, as it helps greatly with balance.  I have ended up on my bottom a couple of times, but that tends to be when I’m in the garden and not concentrating properly.  I have noticed, also, that there is a tendency for my left foot to turn inwards again, if I walk without the crutch and my legs tire.   But I’m working hard on the exercises I learnt at physiotherapy and having to concentrate on remembering to strike my heal properly, so that my weight is carried through my foot and my heal then lifts.I’m finding that one of the downsides of taking the metronidazole is that it’s causing episodes of depression and anxiety.  And I seem to be ultra sensitive to things people say.  It’s as though I’m using every bit of my efforts to cope with CAP, and just don’t have the spare capacity left to deal with everyday hassles.  I’ve a long history of depression from way back, but there’d been none of it at all since starting CAP.  Now that I know it might come, I try to keep a watch out for it, so that I can stop it in its tracks before it takes hold.  It’s sneaky though – and does sometimes catch me unawaresSuch things are not exactly helped by the fact that there’s been no progress at all since the horrendous benefit appeal tribunal experience, as the judge still hasn’t provided a Statement of Reason for the panel’s decision.   It seems that there’s no time scale in which he has to do that, and I’m not able to decide whether I’ll take things further until I receive that.  I may well eventually decide just to let it go, as stress definitely doesn’t do our health any good.  But that doesn’t really feel like justice.  We’ll see...One of the things which does sometimes seem to crop up in my mind, especially since the benefit tribunal, is the gradual realisation that if I do manage to get well through CAP, rather than any doctor saying ‘sorry that you’ve lost out on so many years of living your life because we weren’t able to diagnose and try to make you well’, the doctors are only ever going to see it as further evidence to support their view that the illness couldn’t have existed in the first place, if a treatment they refuse to recognise has made me well.  I know it shouldn’t matter, but somehow it does, just a little bit – possibly because I’d always hoped that, by doing CAP, it might somehow help others in the future, not just me.I think I do sometimes feel under pressure for this to work, because I’m doing it of my own choice, rather than because a doctor has suggested this as a treatment for me.  It’s not helped by the fact that I have relatives who feel I’m deluded and that I’m being conned into doing something which won’t work.  And I have friends who are supportive when I’m OK, but I can’t tell them about the bad bits, or they would try to persuade me to stop!My greatest hope, at the moment, is for a bit more stability.  I never know how I’m going to be from one day to the next, and can go from being fine to not functioning in a matter of minutes.  I almost make the most of the good moments, but it would be lovely to be able to plan things with a bit more certainty.  I’ve just had a couple of really good days, but today I woke up feeling drained of energy.  I’ve got pains in my spine and left hip, and shooting sensations around my body.  Also nausea and craving carbs again – never a good sign!  It’s 14 days since the last metronidazole and this does tend to be the way it goes.To focus of the good things though, further random things, which have improved over the last few years:My blood sugar seems to stay more stable, and I don’t have the rapid drops I used to.  I sometimes experience the feeling of feeling ‘tired’ – in the way that ‘well’ people do.  I’m gradually gaining more sensation to the heat of the water in the shower or bath.  And that thing where fingers get wrinkled if you’re in the bath too long – it now happens occasionally, after many years of not!  I can now drive to places again, without having to use the satnav to remind me where I’m going.  I’ve gone down one dress size, so things which weren’t fitting last summer are fitting again (though, curiously, my weight hasn’t altered at all and is still more than I’d wish).  Oh, and I’ve no idea how or why, but I’m definitely over an inch taller than I’ve ever been before!After reading good reports on here, I ordered a tub full of diatomaceous earth recently.  I’ve been taking it first thing every morning.  I’m sure most of my problems are because my body still doesn’t manage to detox effectively, despite a couple of years of working at improving methylation.  I’m hoping this will turn out to be the miracle solution I’ve been searching for!!!Apologies for when I’m so quiet on here – I think, sometimes, my only way of coping with it all is to stay focused and not think too much.  That’s when I tend to be quiet.  But I’m always cheering you all on – and always appreciated the amazing support here. I couldn't be doing this without you. x  

Boadicea, depression was the worst thing for me with metronidazole: after taking the first tablet of a pulse, I would be in tears after half an hour!  That is why I changed to tinidazole.

It is much better that your improvements in walking have recently taken you unawares rather than a bout of depression.  Maybe you will be brave enough to try tinidazole again in one pulse…………………….Sarah

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Thanks for a WONDERFUL report!

This should be required reading for anyone who thinks it is time to give up after a year on the protocol.  Think of all that you would have missed if you hadn’t stuck with it.

I will be re-reading this report whenever I need encouragement.

Here’s hoping that your good times start lasting longer and longer!

 

 

Thanks for the update Bo...so happy to hear that you're able to pulse and seeing some solid results!

FM/CFS/IBS/Reynaud's/suspected Lupus and many neuro problems, disabling muscle & joint pain and weakness.Started CAP 4/10/13 - Doxy 100mg bid/Clarithromycin 500mg bid/NAC 1800MG per day/Flagyl pulse 500mg bid once per month,All supplements

Your improvements in walking are great - and just what I'm looking for too! I dream of not needing my walking frame one day. 

So glad you're now able to pulse, that'll make a huge difference to your progress, I'm sure.  Congrats!

MS diag. 2005. Doxi 200mg/ Roxi 300mg, Tini pulses and full supplements Having hard time with NAC, backing off that for now.

Well done on your improvements.  May they stay longer and longer.

 all the best.

MS Diagnosed 07/03/05, copaxone Jan 2011 to Jan 2013, started doxy 13/10/12, started roxy 06/11/12, increased doxy 28/11/12. first metro pulse 01/01/13. Tini Dec 2014. Fampyra,B12,Vit C,Vit D3,Vit E,Vit K2, NAC,ALA,AcetylL-Carnitine,Fish oil,

it is so amazing to hear your progress and so wonderful you are able to sing in the choir.  Also appreciate your information that it is not a straight line but an on-going series of ups and downs.  Sometimes it is still difficult to realize that getting worse may mean a spell of doing much better is just around the corner.

I hope the DE is a huge help and will be looking for your updates on it. 

And to read that in the past 3/4 months you have been able to do daily tasks without being exhausted is awesome.  And so encouraging.

Thanks again for your post - I will be re-reading it on days when I need more hope.

All the best,

Louise_C

03-23-2013
PPMS  - May 2009, working with Naturopath since 2009, taking listed supplement_s, plus LDN 4.5 and L-Arginine Plus.
[had CCSVI in 2011 - helped a little]-Doxy 200 mg, Azithromycin 250 M-W-F & NAC 1000 mg.
Tinidazole #8 - 1000 mg days-JUN 8 thru 12 2014

 

Hi, I was so pleased to read your post, it is v helpful to lots of others who are on this road, I nearly gave up and am glad I didn't, this just shows that staying on the abx will help in the long run.

I had it set in my mind that 18 months would be enough, I was wrong.  the way your describe your progress as not being linear etc is very helpful - the sunburn thing I complained about last year still happens, but to much lesser extent now - So thanks for the update, and I'm sure there are lots of us here rooting for you.  love Suzanne

diagnosed RRMS 2000 - had v little trouble til 2009 when changed to SPMS - since then things got steadily worse.   Had ccsvi procedure 3 times, helped with general fatigue but did nothing for walking - started abx 24.08.2

Many thanks for all your replies.  These are very much appreciated.

The latest update is that the brown envelope containing the Statement of Reasons dropped through the letter box a few days ago.  This is supposed to be the explanation from the Appeal Tribunal Panel I endured last February, explaining why they refused to allow my appeal and have agreed with the Department of Work and Pensions that I am not entitled the sickness benefit.  As I explained in my last update, the appeal did not go well.  So I knew all along that the Statement of Reason would probably not make comfortable reading.  I realised, at the hearing, that they didn’t believe a word of what I was trying to explain about my symptoms and how I am affected.  But seeing their comments in writing is even worse than I’d imagined.

Just a brief explanation – this all came about because I was originally assessed by an Atos ‘medical professional’ who didn’t speak English.  The report didn’t reflect reality so, although I fulfilled the criteria for the benefit, it was refused.  So I appealed the decision – and was able to provide lot of really good evidence from my Consultant. 

I’ll give you just a sample of the comments made in the Statement of Reasons:

They say that I “lack motivation” and “lack credibility”, and that it is “improbable that it takes the time I said to recover after exertion”.  They say that I have “a reduced perception of my ability to walk” and that “my explanation of the after effects of walking was a notable exaggeration and caused them to find my evidence lacked credibility”.  They say that there is “a substantial rift between my perception of my physical ability and the reality of my ability based on what is known about my medical conditions and the expectations of someone with my medical background”.

Where to start!  Silly me, all these years that I thought I was ill, I was clearly only perceiving myself to be ill!  I suppose from that we have to conclude that it’s not the 3 years of antibiotics that are gradually improving my strength and walking, but that I was merely perceiving the weakness and inability to walk!  And what right do they have to think they can decide upon the ‘reality of my ability based on what is known about my medical condition’ when they don’t have the slightly clue about my medical condition – because, let’s face it, most doctors don’t either -  and when we all know that neurological conditions affect us all in different ways.

There’s tons more stuff, pages of it, along the same lines.  I was criticised for being “highly articulate” – I must have missed something, but since when has there been a correlation between being articulate and being ill or well?  How insulting!  Oh, and they further justify their decision by saying that I “appeared well presented and smart at the appeal hearing and no evidence of self-neglect”.  Just so as you know, I simply wore legging and a tunic top, boots and a coat – I thought it would be more appropriate than my dressing gown, but no way could it be described a ‘smart’.  And since when were medical diagnoses made on the basis of how you look and how you dress?

And it’s not just me who is said to lack credibility – they’ve refused to accept any of the evidence of my highly qualified and very experienced Consultant Neurologist.  He is said to lack credibility too.  They ‘prefer’ the evidence of the Atos doctor who didn’t speak English.  When we did we lose the plot completely – when did the medical views of a retired GP and lay-person, who have never met you before, count for more than those of a Consultant who has been treating you for many years?

Lots of evidence that they are assuming that ‘fatigue’ is nothing more than a bit of tiredness.  Perhaps it’s just me – perhaps I’m just imagining it! – but when I’m fatigued, brain and body don’t communicate, and I can’t move.  Oh, I forgot – that must be me “lacking motivation”!!!

Can you imagine how I feel about being described as ‘lacking motivation’ – after being motivated enough to find out about CAP and to take the abx every day for the past 3 years!  But, of course, I wasn’t able to tell them that bit, as any mention that I was doing a treatment they don’t recognise, for an illness they don’t want to believe in, would have likely seen me forever locked away in one of the cells in the Court building!!!

Oh, they’ve said I have a “peculiar catalogue of reported neurological-type symptoms”.  Strange, how most of you here seem to have the same symptoms, and how my neurologist has never regarded any of it as ‘peculiar’.  He’s always telling me that we still only know a fraction of what there is to know about neurology.

My hope was that I might be able to appeal to a higher tribunal – but this would need to be on an Error of Law – such as them not taking all the evidence into consideration when making their decision.   Also, when considering whether you can carry out a task, they are supposed to take into consideration whether you can do it ‘reliably’ and ‘repeatedly’ – not as a one-off and then you can’t do it again.  This now looks unlikely – as they make it clear in the Statement that they have taken all the evidence into consideration, but that they don’t believe anything said in any of my evidence!

I was in defiant mood yesterday, determined not to let anyone or anything get the better of me.  But today I’ve felt on the verge of tears all day, bewildered that anyone could come up with such a poor view of me, when I’ve only ever tried to be honest and do the best I can to be as OK as I can.  As a friend said yesterday – nothing at all they have said is based on any facts at all.  I knew at the appeal that they had made up their minds before I ever went in, and that I never stood a chance.  But today, no matter how much I try not to let it get to me, there’s a voice inside me screaming that I must have done something wrong to make them have such a view of me.  It’s a horrible feeling, to be accused of lying, and brings up the sort of stuff many of us here went through, of years of not being believed by doctors.

But this is the reality of what it happening with the benefit system.  The Appeal Tribunals are described as ‘independent’ – but I’m afraid they are not, as they clearly favour DWP evidence over the claimants.  The Government should be honest and admit that their intention is to not pay any benefits to anyone.  Instead, ill and disabled people are being accused of not really being ill or disabled, in order to justify not paying benefits.

Writing things down usually works well for me, by stopping everything floating around my mind and escalating out of control.  So, time to stop getting stressed.  Onwards and upwards... 

I could, though, make good use of a few hugs, please! x

 

 

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

B- The problem is, you found the protocol and it is helping you!

 If you had waited to start abx, and had to be dressed by someone else and wheeled into the building by someone and the spittle dabbed from your chin while you sat incoherent, then certainly you would not have been denied. 

Bad you!!!  You've been killing the disease that was trying to kill YOU.  For shame! 

Seriously, getting well is the best revenge.  And then you must become an advocate for those who cannot advocate for themselves.  What a horrible experience, to have your integrity undermined and your medical situation treated dismissively.  What arrogance.

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi there,

I am sending you a big hug.

Your report makes me very angry!  You are one of the MOST MOTIVATED people.  You’ve been at this for three years and you are always tweaking your healing processes.

You write beautifully, and my hope is that one day you will write a book about your journey with the protocol and the medical system.  And most of all I hope that your book has a very happy ending!

 

 

Boadicea, when I read this post this morning I was so angry and I still am.  You would hope that if all these government organisations are going to farm all the dirty work out to ‘independent’ organisations, they would make sure that everyone in them did not assume that only people needing help could neither articulate their needs nor keep themselves clean and tidy and then be downright rude to all the neat and articulate ones.  But, no, it is not just the neat and articulate ones, is it? It is everyone who needs a bit of help: whose idea was it to start cementing spikes into ground where homeless people try to sleep at night in London?  The world is slowly going mad, or this government is anyway.………………………….Sarah xx

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

D W

Bo,

What an articulate and harrowing account of a very unpleasant experience.

 

True, Mac: arrogance and incompetence generally go hand in hand.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Hey Bo ...

I have just glanced through your latest posting.  I share your rage.  I now know the origins of the words like "Outrage" and "Outrageous".

Hey, because the Statement of Reasons says that they've taken X, Y or Z into account that is not proof that they have.  You know and I know that their decision was based on exactly the same criterion as the ATOS doctor used: "You looked OK and you sounded OK".  The fact that they have used this wrong criteria makes them wrong in law.

Right at this moment you feel as though all the fight is knocked out of you; that the whole country and the whole world is against you.  The people of Britain are not against people like you. The people of Britain are appalled that some of this stuff that's going on.

Please make an appointment to see your MP.  Please, put together a summary for him so that your case is easy to understand and progress.

If it's hugs you're in need of, Bo ... there's a thousand on the way from me.  I know that you need more that just hugs, though.  Perhaps lucky Irene will send you some of her good luck too.

The other thing that's coming your way, faster than you realise, is wellness.

Bo, you are in my prayers right now.  I don't touch-type but as I type this my eyes are close and I am praying for you: strength, returned health and good fortune soon to come.

 

                                       Image removed.

 

G.

xxx

“Don't believe everything you read on the internet.”

―    Abraham Lincoln

Hi Boadicea,

A terrible injustice and we feel your rage. Keep fighting and get well, big hugs from the two of us.

TandT

Optic Neuritis in teens. Diagnosed spms in 2001.

Started suppliments in Feb 2014 in readiness for ABX.

Started Doxy 17-04-14, Roxi 25-04-14, Full Doxy 02-05-14.

Started Tini 16-07-14