Submitted by boadicea on Mon, 2014-12-08 18:32

I don’t generally tend to post when I’m feeling a bit fed-up – I suppose I’m another whose Mum always taught me that if you can’t say something good, don’t say anything at all.  And I hate to seem like a miserable one.  But it feels as though it’s time for an update – you might wish to get a cup of tea or something nice and herbal before starting to read though!You’ll recall from previous updates the battle with the Department of Work and Pensions I’ve been fighting for the last 2 years, over sickness benefit.  Well, it all came to rather an unsatisfactory conclusion when I received a letter advising me that a High Court Judge has refused me permission to appeal to the Upper Tribunal.  Just saying those words doesn’t really convey what all of this has been feeling like inside. This whole sickness benefit thing started to go wrong when I was assessed, nearly two years ago, by the foreign doctor who didn’t speak English.  He didn’t understand anything I was trying to explain to him and somehow concluded I was fit and well.  But then, we have a Government determined to stop paying sickness benefits to ill and disabled people, so I suppose that wasn’t really all that surprising. I then had the appeal panel from hell, who interrogated me unforgivably and decided they preferred the foreign doctor’s evidence over that of my highly experienced Consultant Neurologist, and managed to conclude that I simply ‘lack motivation’.  With the help of an expert in welfare law, I decided to fight this further.  You can’t do this simply because you don’t like or agree with their decision – you need to show that there have been errors in the way they have applied the law.  We found a whole host of Errors of Law in the tribunal’s Statement of Reason, where they had not adhered to the legislation or case law.  So we put together a good case and then had to seek permission to appeal to the Upper Tribunal.  First we had to seek permission from the First Tier Tribunal – who made the original decision.  But that was denied.  So we than had to ask for permission from the Upper Tribunal.  But that permission has now been refused as well – so we can’t take it any further now.The reasons for refusal are three pages of complete and utter non-sense.  Not just my opinion, but that of my legal adviser as well.  It’s upsetting just trying to tell you what they’ve said about me.  Their view is that they don’t need to comply with the legislation or case law, because they simply didn’t believe me.  They say that my evidence ‘lacks credibility’ and that it’s ‘implausible’ that I have the symptoms I say I have and am affected in the way I describe.  If that’s not bad enough, they say that they don’t need to accept my Consultant’s evidence (which explained everything and supported me completely) either, because it’s at odds with their belief that my own evidence is unreliable.  Work that one out!!!So, that’s the end of the line as far as the sickness benefit claim is concerned.  But the unfairness of it all, and all these lies and assumptions, is difficult to come to terms with.  I had to battle many years of disbelief from doctors, until I found my Consultant about eight years ago.  And I really thought that those days of not being believed were in the past.I find it insulting beyond anything I could ever have imagined, that they are able to say that I lack motivation and lack credibility - and I’m angry that I’m now completely powerless to prove them wrong.  I’ve battled for 25 years to try to find a way to be well.  I’ve missed out on career, relationships, family.  But never for a moment have I lacked the motivation to keep fighting and hoping there might be a way to get more well.  They don’t have a clue what motivation is!With hindsight, I can see that I probably didn’t cope especially well on the day of the tribunal appeal, as I was feeling poorly anyway, I felt panicked needing to get a taxi to get there, as there is nowhere to park anywhere nearby (I’m convinced they do that deliberately), and because I’d never been in a Magistrate’s Court before.   I think they probably interpreted my panic at being in a situation which I wasn’t feeling well enough to handle as a sign that I must be lying, instead of seeing that this is the panic we feel when we are feeling so poorly and in a situation where we have no control over things. I think the problem is that, at each stage, they dug themselves into such a hole, that no one was prepared to be the one to alter the trend and dig themselves out.  Anyone with any common sense, reading all the papers, would be able to see how this has all gone badly wrong.  But Judges are reluctant to criticise other Judges.  And, in the end, it’s another one crossed off the Government’s list as needing sickness benefit, so goal achieved, I guess.I generally find a way of getting over these things in the end.  So I’m hoping I will again. I feel angry though, and hurt that anyone should have such a poor view of me.  It doesn’t exactly do much to boost one’s self-esteem.  I’ve no idea how all this happened, why they took against me to such an extreme and why no one was willing to resolve it.  My only crime was to become ill.  Yet they can accuse me of lying and I’m denied the right to defend myself.  It’s too much stress, and I’m sure that’s not good for any of us.My usual way is to fight injustice, but I’m not going to have that opportunity.  So what they’ve said is there forever now.  I’m not entirely sure how to sort that in my mind and resolve it all so that I can put all this behind me now.  I had a lifetime of depression before CAP, so I’m determined not to let this drag me down that path again.  So far, so good.And, whilst I’m having a bit of a moan – something else which upset me the other week.  My neurologist is brilliant and is supporting me completely with what I’m doing.  Whilst I’m happy to be independent most of the time, I do need that bit of support in the background, especially as he is the only doctor who has seen how bad things had got and has acknowledge that.  I think all my experiences with the benefits probably makes that even more important to me at the moment.  Someone who believes in me!  He puts me down for an appointment every 6 months, but the waiting lists mean that the appointment ends up being once a year.Anyway, I had an appointment for a couple of weeks ago.  I managed to get there (just over a one hour drive) and was all ready to catch up on the past year.   But then I discovered that one of the hospital managers had moved a whole load of his appointments to a Registrar and so he wasn’t even there that day.  I know it wasn’t his fault – Consultants are no longer even able to say which patients they need to see, as it seems managers rule the roost in hospitals these days and make these decision – but I still felt let down.  He has since written to me to reassure me, and say that he is going to arrange for me to have an appointment when he is taking the clinic on his own, but that might take a while.I think the thing which annoyed me the most was that I’d used so much energy to get there, and spent £15 on the toll road and car parking, plus petrol, for no reason at all.  And I’d so much been hoping to impress him with the improvements in my walking.  A bit of encouragement from a real life person would have been nice – especially after so much disbelief from every other doctor.  I think I needed a few moments where all of this didn’t feel so completely and utterly my responsibility.  It was a bit like waiting all year for Christmas, only to find that Santa’s not turned up!Until last week, I’d not missed a single day of the abx, since May 2011.  No matter how ill it made me feel, it never crossed my mind to miss a day.  But something had to give last week, whilst I tried to sort things out in my mind, after receiving that letter about the benefit appeal.  So I had a week off from taking abx.  But back on track again now!I think the week off was a nice bit of respite – I’m having lots of improvements, but the process makes me feel so ill so much of the time, as my body gets overwhelmed by the die-off and toxins.  No matter how hard I try, it doesn’t seem to be getting any easier.  I know no one ever did say this was going to be easy, but I keep hoping that it might become a bit more manageable at some point.  I guess I’m becoming a bit impatient now, especially as I’ve had glimpses of what it’s like to feel completely well.  I love that so much, it makes me want more of it.The main areas of die-off, inflammationand pain have been the right side of brain (a specific area, where I’ve had pain crop up for 25 years), neck (especially right side), right ear, right side of face/trigeminal neuralgia, sinuses, left eye, hands, specific area in spine, area in my left lung, left ribs, chest infection symptoms, left hip, bladder, kidneys, bowels.  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. I’m struggling with so much never ending die-off.  It seems to be like a snow ball rolling down a hill – once it starts, it just keeps on going, gaining momentum all the time.  My last pulse was over 6 weeks ago – yet I’m still not back to where I was before it.  I don’t know why I’m not managing this as well as everyone else.  After all this time, I still only manage to tolerate 5 metronidazole tablets. I have had a few occasions this year where I’ve felt completely well – more well than I can ever remember feeling before - where I can do all sorts of things without them being the usual huge effort and without a familiar huge cost afterwards.  So I know the potential is there for my body to feel that way. The problem is, the good bits never last long, before there’s either more die-off all on its own, or before it’s time to take some more metronidazole.  And the good bits tend to happen when my body feels inclined, not necessarily when there are chances to meet up with people and do things, so I’ve missed out on doing lots of things I’d loved to have been able to do this year, which would have cheered me, because it just turned out to be bad timing and didn’t coincide with a good bit. When I take metronidazole, I now get some reaction within hours – shivery, nausea, fatigue.  But nothing I can’t cope with.  I tend to get hit hard, though, about 7 to 10 days after taking it.  I go from feeling OK to feeling poorly in the matter of minutes.  Herx reaction – immense shivering, nausea, fatigue, flu-like, pain, night sweats, completely debilitated and unable to function.  And this tends to go on for weeks.But sometimes all of this happens when I’ve not taken the metronidazole, so even if I didn’t take that, there’s no guarantee of feeling OK.  I’ve never been entirely sure why this happens, but I’m assuming this must be the bacteriostatic abx having a bactericidal effect.  And I’ve definitely seen improvements since taking the metronidazole, especially in my walking – so I want to stick with it.I’m sure the reason all this is making me feel so ill is that my body struggles to detox.  I know I have polymorphisms relating to methylation genes and B12 issues.  I’ve researched and tested for all of that, and take loads of supplements to support methylation, which I believe are helping to some extent – but not enough to stop my body from becoming overwhelmed when there’s lots of die-off.I’m already using everything imaginable to detox – the list keeps getting longer.  I’m also going to try supplementing oral and liposomal glutathione.  I know many feel the best way to increase glutathione levels is to take glutathione precursors, but that doesn’t seem to be working for me.  I’d love to try IV glutathione – just as I’d love to try B12 injections – but neither are an option for me.  So I’m hoping my latest glutathione trial will do the trick and work some magic.  Hoping!   I’ve not been able to go to church choir since summer, but I’d love to be OK enough to go for the next few weeks, and to sing in the carol service and at Midnight Mass.  I’ve not given up hope just yet – and I missed out last year, so really don’t want a repeat of that.  If I can do this, it would be guaranteed to put things right and cheer me. Just to prove it’s not all bad – there are some good bits!  It just doesn’t feel like it sometimes!As I didn’t get to see my neurologist, I’ve not had blood tests for over a year.  My GP won’t talk to me or help me with anything, so I decided to pay for blood tests last week, just to check up on things.  And I was thrilled to find that my Liver Function tests are fine.  You wouldn’t even notice, from them, that I’m taking abx.  So pleased!And the improvements so far, especially in neuro function are huge.  Brain and body are gradually communicating with each other again.  Walking has improved miraculously – more than I could ever have imagined possible.  I’ve not used the crutch at all since July and I don’t even need the orthotic in my shoe anymore.  Every symptom I’ve ever had has been revisited at some stage – as if screaming that this was Cpn as well.  So, without any doubt, the abx are doing good.  If only I didn’t feel so rotten most of the time, I’d be able to benefit from the improvements a bit more!Oh, and talking of improvements – I saw my dentist a couple of weeks ago.  I’ve known him for over 25 years and I’ve told him all about what I’m doing with the abx and showed him the research.  He finds it a little bit odd (some of his best friends are neurologists!) but said he would do exactly the same thing, in my situation.  He’s impressed by the amazing effect doxy has had on my gums, and he also commented on how far more content and self assured I seem to be these days.  He’s convinced the abx are doing good.  That pleased me!Well done to anyone who has made it to the end of this update!  Blue Peter badges all round!  

My heart goes out to you Boadicea.  What an awful lot of adverse experiences to come through - a government department that has a mandate to get people like you back to work and stop scrounging from the state.  They don't care.  But we do.  All of us on this site have been knocked back by the disease or by the system so many times, and we all have bruises to show. 

I am joyful to hear of the real progress you are making in the quality of your life.  The cost is high though, it isn't an easy treatment but it is all we have just now.  You get fed up feeling ill all the time and just long for a great day to keep you motivated. 

Be kind to yourself,

Irene x

Hi Boadiciea,

Thanks for such thorough update!  Of course I was disappointed to read about how you were treated by the tribunal and how you still struggle with Metro  BUT  I was delighted to read how you are now walking without your crutch!!!  What a wonderful accomplishment!!!

I have been feeling a bit frustrated lately, but you've given me renewed hope that perhaps some improvement is around the corner for me...

I am sending you positive thought that you will sing in the choir at Christmas this year!

Best regards!

I'll send you my address via pm; please send my badge immediately.  Image removed.

As for self-worth, I can only imagine how you feel.  I was made to feel like pond scum by my young, know-nothing neurologist when he and an infectious disease specialist mocked me (to my face), snarking about how 'in ten years, we'll all be treating MS with antibiotics, hahahahaha'. 

I left that office looking at my shoes as I walked through the parking lot.  I clearly recall which running shoes I wore and was very aware I was shuffling along, staring at them.  I felt like a child who'd been falsely accused of stealing something from the classroom.  No way to defend myself, no emotional fortitude to draw on.  I felt like I'd been beaten with a bat.  For those of us who believe our good name is everything, it's devastating to be called a liar, or a fool.

But, we prevail.  I am recovered.  You are recovering.  And, as they say, living well is the best revenge. 

When you are able, you will become the best advocate possible for those going through this same struggle, and - eventually, we will all be vindicated.

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

Hey ...

I have just finished reading your post this minute.  Wow!

Right: Blue Peter badges,  as you know, there were several different types; there was even a gold Blue Peter badge.  For you, Bo, there should be a special edition platinum Blue Peter badge.  You are the bravest, cleverest and most heroic person I have ever come across

When I read the killer paragraph on your post, I can only say that it was a good job that I was not taking G-Rad.  If I had have been, my anger would have exploded not just my shirt but the whole house.  I hang my head in shame that this great injustice is supposedly done in my name.  It is an utter disgrace.

If ever you doubt yourself or wonder who believes you: I do and I strongly suspect that every single member of this site does too.

You are the example that I and others point to.  You are the the beacon of hope that we aspire to.  You are the example that we follow.

I will write more when my anger subsides.

Much respect to you, Bo.



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

―    Abraham Lincoln

I can't begin to imagine what you are going through right now and how unbelievably brave you are. You are an example to all of us. My heart goes out to you and I wish you all the best. 

I saw this on a business website about appealing upper tribunal decisions I thought I'd post just in case it might help: 

You can dispute a decision by the Upper Tribunal if you believe the procedure was not followed correctly, or on a point of law.

If you think there has been a procedural problem

If you disagree with the Upper Tribunal decision because you think there has been a problem with the process, such as a document going missing or a representative not being available for a hearing, you can ask the Upper Tribunal to set aside the decision.

You must make any application to do this in writing within one month of the decision. The Upper Tribunal may decide to set aside the decision on these grounds if the judge considers it is in the interests of justice to do so. If the decision is set aside, the judge will also decide what is to happen next. Usually the appeal will be heard again.

If you are unhappy with the decision on a point of law

If you believe that the Upper Tribunal decision is wrong in law, you can consider appealing it to the Court of Appeal in England, Wales and Northern Ireland or the Court of Session in Scotland.

Applying for permission to appeal against an Upper Tribunal decision

If you wish to appeal the decision on a point of law to the or Court of Session, you must first apply to the Upper Tribunal for permission.

You must make the application within one month after the latest of:

  • the date written notice of the decision was sent to you
  • the date you were notified of amended reasons or the correction of a decision
  • the date you were notified that an application to set the decision aside had not been successful

The application must be made in writing to the Upper Tribunal, identifying the error of law you think has been made and how you would like the see the matter resolved.

What happens with your application for permission to appeal

Once the application has been received, the Upper Tribunal may review its decision. If it believes that it is legally appropriate to do so, it can:

  • set aside the decision
  • amend the decision
  • correct the decision

Whatever the outcome, the Upper Tribunal will notify all parties to the appeal in writing. It may also ask all parties to make representations during any review.

If the Upper Tribunal decides not to review the case, or decides that its decision should stand, it will also then decide whether or not to allow permission to appeal to the Court of Appeal or Court of Session. Permission to appeal may be given only if the judge is satisfied that your proposed appeal raises an important point of principle or practice, or there is another compelling reason.

If you are given permission, you should appeal to the Court of Appeal or Court of Session directly.

If you are not given permission, you can ask the Court of Appeal or Court of Session to review the decision not to provide permission to appeal.

You should always get legal advice if you intend to appeal to the Court of Appeal or Court of Session as you may become liable for extensive legal costs.

Oh my goodness me!  So these benefits people now are allowed to disbelieve a medical consultant whillst believing an adjudicator who can't even speak English  So if 'the authorities' have decided something they will twist every tiny little thing around to make what they believe to be the truth.  So, if they are  denying you benefit what are you supposed to do?  The workhouse culture died out long before we were born but maybe it is on its way back.  The Bedford workhouse was a fine Georgian building which I can see from one of my windows.  Now it is used for NHS management staff: maybe thery will have to move out to make way for it to be used once more as a workhouse with one section for misidentified  people who really can't work as much as they would like to.

Welcome to Cameron's Britain!................................Sarah

And as SG says, a platinum blue Peter's badge for you!!

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.