What a difference a day makes
Last year I wrote a piece for BADD and asked what exactly ‘disabled’ was. This year I’m even more confused.
You see on February 4th this year I walked into my local hospital fully able and came out an hour later ‘disabled’. Good God! I hear you say, what on earth did they do? Can you sue?
Panic not, it was nothing that drastic. I went to get the results of an MRI scan. Let me backtrack a bit. 2007 was an awful year for me, it was one thing after another. I’ve always been pretty healthy but I just kept getting annoying illnesses and it all culminated just before Christmas in a bout of disorientation. Dizziness, double vision. To cut a very long story short on February 4th I was told I have Multiple Sclerosis (MS).
And………..?
And nothing. It’s not curable, there’s nothing we can do, go away and come back when you get worse.
And that was it. No options, no advice, no leaflets just off you go and be disabled.
Now this blog is probably going to wander around a bit. Some would say it’s due to the MS brain fog which makes you lose track and forget what you’re saying halfway through a ……..
In this case it’s because I’m in two minds about what to post. You see, I’ve always had a certain amount of respect for the medical community but since February I’m beginning to think there is either a culture of disablism rampant within the NHS, a refusal to accept change or Government funding and target problems. I honestly can’t work out which.
I’ve never been one to just sit back and accept something I don’t like. I’ll fight it. I don’t like having MS and I certainly don’t like being told to get worse so that I can then be stuck on some hugely expensive drugs that won’t fix things, just make them a bit more bearable. I especially don’t like being left with no options when there are options, just nobody in the mainstream NHS is willing to look into them.
A few chats to friends who have also been diagnosed with MS resulted in pointers to a number of research studies. Some are controlled by the drug companies who are in the process of developing more and more disease modifiers, (note: modifiers, not cures) all of which are more and more expensive; 2000 pounds a month is not unusual. Others are by medical professionals who can think outside the box and have come to the conclusion that there’s something not right.
There are many studies going on all round the globe based on the belief that many of our disabling illnesses are actually caused by bacteria and therefore, in some cases, curable.
Great I thought, I’ll do one of those. I did a heck of a lot of research and found a Combination Antibiotic Protocol (CAP) that is getting some good results with patients suffering from MS, ME, Lymes Disease, CFS, IBS, FM, Porphyria and a number of other things. Antibiotics are out of patent, of no interest to the drug companies and therefore cheap. This Protocol costs about 100 pounds a month at UK prices, 50 if you can get your drugs from the United States.
This from a lady who had aggressive secondary progressive MS:
“Now 2 years have passed, along with two follow up MRI scans, and soon to be a fourth before the old machine is mothballed. Both of these showed remarkable improvements unheard of for someone with established progressive disease. Some lesions on the outside edge have completely vanished and the others are greatly diminished, apart from one relatively small one in the periventricular region which is probably the very oldest one. There is no new activity at all. “Sarah Wheldon
and this from another MS sufferer:
I had a visit with my Neuro yesterday to go over my last MRI. I give him great respect for having the ability to look me in the eyes and say “you’ve made me a believer”.. (in the CAP treatment). “After 2 years and no progression of lesions/disease from the start and you have improved so greatly, I am a believer.” He then said patients usually in my case with such a severe onset only continue to worsen quickly and steadily from the beginning.Karl
and finally
Used to have multiple sclerosis, on the intermittent Wheldon protocol since March 2006, EDSS 0 for over 4 yearsBarbara
So I printed off a load of info, trotted off to my GP and hit a brick wall. Apparently, although the Dept of Health state that a GP can prescribe any drug that is licenced if they deem it useful, the vast majority of the medical profession won’t do so unless it is “routinely prescribed for that particular illness”. Catch 22. They won’t prescribe until it’s routinely prescribed, but it won’t get routinely prescribed as no one will prescribe. My GP stated that he was fully behind me, if he was in the same position he’d be doing exactly the same thing but he had taken legal advice and had been told not to touch it. My Neurologist wouldn’t even look at it.
So, we have a treatment that may work and costs 100 pounds a month, against something that masks the symptoms, prolongs the disease and costs a fortune. To me this is a no brainer.
I don’t trust the drug companies to have our best interests at heart. Why would they? There’s a lot of money to be made from prolonging a problem and if they started selling cures they’d put themselves out of business. The medical profession on the other hand are supposedly tasked with fixing people. If it’s a choice between ‘nothing’ and ‘possibly’ then why go for nothing and at 200 times the price?
Now I’ve managed to find a very good Microbiologist who is willing to work with me on a private basis but no fees. I pay for my own drugs and he keeps an eye on what’s going on and it’s early days but so far so good. Others on the protocol have managed to find a willing GP but have been asked to keep their names under wraps so they don’t get it in the neck from……….? Who? The Medical Council?
What exactly is going on here? Is the NHS (and thus GPs) completely in the pockets of the drug companies? Are they all terrified we’ll sue if something doesn’t work? Whatever it is it needs to be looked at and sorted out fast. Some recent figures state that a new case of MS is diagnosed every 20 minutes! I don’t have similar figures for other diseases but coupled with an increase in life expectancy it would seem that ‘the disabled’ community is going to grow exponentially over the next few years.
There are many people with a ‘disability’ who will never be able to overcome it, for various reasons, and we need to keep up the fight to provide as much assistance for them to live as independently as possible, but for the others, if there is a chance that their long term problem can be turned into a short term problem then surely it should be jumped at. Not least because it’ll free up more cash for those that really need it and don’t have the strength to fight for it.
Links for more info:
Unbiased MS Research and News
Multiple Sclerosis - A Chronic Infection
CAP Protocol Information - I and many others keep a running diary on here and get a lot of support from medics and those who have ‘walked the walk’. They’re a great and brave bunch of people.
NTE responds:
Posted: May 1st, 2008 at 4:26 pm →
I haven’t heard of the CAP protocol, but I’ll definitely be looking into it now. (I’ve got CFIDS and FM as well as other issues.) Thanks.
As for your post, I have to say I understand completely the whole “We don’t know what to do for you, but you should be happy that we at least gave it a name” phenomenon that goes on in the medical community, and how frustrating it is! I’m glad that you’ve found something that works for you.
Maggie responds:
Posted: May 2nd, 2008 at 9:58 am →
Hello there, thank you for sharing your thoughts. The CAP protocol looks interesting. I have ME/CFS so it looks as if it might be useful to think about trying it out.
I wonder about misdiagnosis too - a friend who was diagnosed with ME over 30 years ago was re-diagnosed with MS after an MRI scan. The one thing that she found helpful was that after being turned down for DLA before her MS diagnosis (when she was labelled as having ME), she re-applied and was awarded it with no problems. So much for the idea that it’s how your illness affects you rather than what it is - her symptoms and difficulties with everyday life didn’t change at all. Just her diagnosis.
I very much hope that you get improvement with the antibiotic treatment.
Best wishes from sunny Liverpool,
Maggie
Jaybee responds:
Posted: May 2nd, 2008 at 10:57 am →
If you take a look at the Protocol link I posted it goes to a “Getting Started” set of pages with info about the bacteria and the regimen in plain English. One of the problems we have with GPs in this country and in the US is they have been conditioned to be wary of long term antibiotic use which, can cause immunity. My GP stated that it then wouldn’t be effective when I got “The big one” to which my answer was - “If MS isn’t the big one, then what is?”.
This protocol has been designed with combination abx precisely to prevent that. There is currently a study going on at the Vanderbilt Clinic in the US under the control of Dr Charles Stratton and many US patients are directing their Doctors to him for further info and support. In the UK, Dr David Wheldon works with MS patients and will offer advice to their GPs if they are willing to support but many GPs will turn you down flat as mine did.
If you want to try the Protocol then you need to take succinct information to your GP, for heaven’s sake don’t turn up with a mountain of paperwork as they just won’t read it. People on the cpnhelp forum can advise you what to do.
It will be interesting to see what happens over the next few months as in the US, private health insurers have recently announced that they are no longer willing to pay the high prices the drug companies are charging for the MS modifier drugs. Patients who have had to contribute $30 or so a month to get their medication are now being told to pay 10 times or more for the same thing. We suspect the CAP trials at Vanderbilt will suddenly get a lot more takers.
Helena S. responds:
Posted: May 2nd, 2008 at 12:09 pm →
Your brain fog has lifted, you’re seeing very clearly how the medical establishment operate. I’m 33, at 16 was diagnosed with ME, perpetually severe for 3 years (couldn’t walk, talk, see or anything controlled by muscle function), had remitting and relapsing bouts of that severity through my twenties until age 30, a sustained remission, still stable.
Here in rural Scotland, GP advice was “I don’t know, next?” In a community of 8000, I was 138th person diagnosed with ME that year alone. The most help I ever had was from a microbiologist I saw twice in 15 years: one free copy of his book, 14 chapters of “life sucks, accept that gracefully and you’ll make it easier on yourself”. An emotional self-help book? From the county’s (then) top diagnostician. Gee, thanks. Not.
Being 16, isolated pre-internet, immobilised, and written off? How dare they! I recovered, am 3 years into sustained remission. I believe it’s a miracle as there is certainly no-one else to attribute it to down here.
Thank you Jaybee, and those medical visionaries daring to think outside the box, risking surprising resistance and ostracision by their peers to offer tangible hope, not resignation to futility. All power to those who believe life is for living and worth fighting for, not for enduring discretely outside of the system which discharges its medical and fraternal responsibility to help at the point of labeling with a diagnosis of “can’t help, so won’t help”. And God bless those who squeeze every drop of juice out of every day with eyes wide open looking for solutions, and who refuse to quietly and humbly let a diagnosis overshadow all the sparkle out of their lives.
Sara responds:
Posted: May 5th, 2008 at 7:51 am →
Good for you for your dogged self-advocacy! (And thank goodness you have the means to pay for the microbiologist.) I really hope this treatment works for you, and for others.
Jaybee responds:
Posted: May 5th, 2008 at 2:54 pm →
No, I don’t pay for the Microbiologist, I just pay for the antibiotics. The man is a true saint. He sees MS patients who want to do the CAP protocol without charge. His wife had MS and was rapidly going downhill. He contacted the Vanderbilt and worked on the Protocol with Charles Stratton. The outcome is in the comment above from Sarah Wheldon.
Jaybee responds:
Posted: May 5th, 2008 at 10:45 pm →
And WHOA! Seems my thoughts may be closer to the truth than I suspected. In the US the Infectious Diseases Society of America has agreed to review its guidelines, which say there’s no evidence long-term antibiotics can cure “chronic Lyme” disease - or even that such a condition exists. Lyme patients would beg to disagree but these guidelines are followed by the Medical Insurance companies so Lyme sufferers cannot use their insurance for treatment.
Anwen responds:
Posted: May 6th, 2008 at 9:02 pm →
Oh man, yes, the medical establishment are basically a big pain in the bum - both the GP I first saw about FM and the consultant I saw at the local hospital basically said that they didn’t feel a diagnosis would be ‘helpful’ to me, i.e. they didn’t want to ‘encourage me’ to ‘medicalise my symptoms’. *headdesk*
I have the serenity prayer thing on a badge (from a cafepress store, I can’t remember which one) Unfortunately it is in the world’s tiniest font, but it is pinned to my noticeboard and I love it.
Jaybee responds:
Posted: May 6th, 2008 at 9:39 pm →
Yes, I know the one. “God grant me the serenity…”
After this lot, I’ve changed it.
God grant me the guts
to ignore the Doctors I cannot change;
strength to throttle any Neurologists I can;
and wisdom to know a lot of them are idiots.
bruce responds:
Posted: May 7th, 2008 at 7:38 am →
Welcome to the merry world of M.S., where people think you’re drunk if you stumble or slur your speech, colleagues think you’re uninterested if you forget things, GPs don’t want to know as you’re chronic.
Jaybee responds:
Posted: May 7th, 2008 at 12:20 pm →
Hmmmm and family either panic, offer you a wheelchair and start researching hospitalisation OR assume you’re putting it on. After all, you’re taking all those pills, haven’t they fixed it yet? My mother went into a total funk and sobbed that parents always expect to die before their children. I told her it could be arranged.
I get brain fog to a certain extent but my big problem is time. I no longer have any grasp on it. An hour to me can be 5 minutes one day and eight hours the next. My other half thinks this is great as he can swing the lead for hours when I ask for help in the garden and then persuade me I only asked 5 minutes earlier. I’ve also had to tell all my neighbours not to panic if they see me flat on my back in the garden. I seem to have lost the ability to go from squatting down to standing up. I have to go through rolling over backwards first, after which I’m fine.
I’ve got round the drunk assumptions by hanging onto things although I really only develop the left-handed swoops when I’m not concentrating on my walking. I have keyboard dyslexia, my fingers hit the key next to the one I’m after which is a pain. I type fast, I’ve gone from one typo per paragraph to one per word. Thank God for spell checkers.
The most annoying part about all of this is I finally persuaded my other half to buy me a cross-cut sliding laser guided Mitre Saw for Christmas and nobody will let me use it in case I remove my fingers. It’s sitting in its box laughing at me. Grrrrrrr.
And Bruce, we should get together and compare lesions