Professional unwillingness

I'm relatively intelligent, clever enough to know I have no medical training whatsoever! And to know that we all, usually,  know a little about a lot, which means most of us only know enough to question. And to hope to receieve answers from those who know a great deal. So my question is why do you believe, are so few professionals open to the ideas put forward here?  Is it simply ego, the arrogance and professional jealousy  we've all encountered? Profiteering by the  pharmaceuticals, who make so much from placebos? My Polish consultant wants this protocol to have a positive outcome, but my GP seems to feel under thret, as do acquaintances working in the wider hmedical field. My gut tells me that, even though the protocol can be tough, it's worth following and understanding the research, explained in laymen's terms, by the wonderful doctors involved here. What does everyone else think?

Jane,

 

When Sarah was given a diagnosis of aggressive SPMSi by a consultant neurologist in Bedford, the neurologist took me aside and said that Sarah’s work as an artist was over and that I should start looking for a place in a nursing home.  I found the Vanderbilt work and started Sarah on antibioticsi. Her strange mental state vanished very quickly, and she began to improve. I met the neurologist at the Medical Institute. He was initially very interested. The next time I met him he had become very hostile. He refused to look at the repeat MRIs which showed marked improvement. Why the change?

 

I can think of two reasons for this change of heart.

 

1) The neurologist has sessions at Cambridge, which does research into MS by means of treatment with Campath (alemtuzumab).  The makers of this drug bankroll this research. It is big business. One 12mg dose costs £7,000 (NICE info). I think the neurologist was told to shut up or his sessions at Cambridge might be curtailed. The Cambridge scientists know all about the possibilities of antibiotics: a patient of mine who was improving went to a conference in Cambridge and began to talk about antibiotic treatment of MS. He had the microphone snatched out of his hands.

 

2) The neurologist is one of those doctors who regard their professional gravitas as being more important than the wellbeing of their patients. I sent him a print of one of Sarah’s recent paintings twelve years after he had told me that her days as an artist were finished. He never responded. (A 2010 painting of Sarah’s appears on the cover of the current issue of the prestigious literary magazine Confingo http://www.confingopublishing.uk/< )

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

We've discussed this many, many times before, but it's been awhile, so here goes...

My experience, when first diagnosed with MSi, was with a newly minted, squeaky clean neurologist.  He was a nice young man, not yet professionally polished and I thought he'd be open to hearing about the protocol and helping me out with trying it.

He listened, seemed intrigued and said he'd have to discuss it with the other two doctors (older and well-established), but he really wanted me to go on Copaxone immediately.  I declined, saying I was newly diagnosed and felt I had the luxury of some time to research and choose from my options.  He pushed HARD for Copaxone.  I refused it.  Fast forward to the next appointment & he was totally turned against trying the abxi protocol.  His partners had convinced him, due to lack of studies, liability issues, the cost of malpractice insurance and 'standard practice', he could not proceed with the treatment.  He wasn't even apologetic; he was totally convinced by them.

I've spoken with other physicians since then (two who are relatives) and they are SO entrenched in what they were taught in medical school, they simply cannot hear the words when you try to discuss a new approach, a different thoght process, a unique perspective.  They have to preserve their standing, their practice, their income flow (huge student loans) and they have to conform.  They were taught MS is an 'autoimmune' disease and, by golly, it HAS to be an autoimmune disease, because everything they believe and have built their carreers upon SAYS it is an autoimmune disease of unknown origin.  

I am lucky.  My physician HAD the disease and was therefore open to seeking and using any treatment that would defeat the disease.  I was a fortunate beneficiary of my doctor's illness and total recovery.  But the vast majority of physicians have everything to lose and little to gain by treading into these non-standard waters with us, so they mock us, demean us and refuse to treat us.  It's a tough sell to an entrenched, intractible mindset like theirs.

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

One thing I have noticed in my professional career (non-medical, but science/engineering based) is that there are really very few people who are capable at looking at the available evidence with a lot of nuance and insight. There are lots of smart people who get where they are not by understanding things from the ground up but by learning a lot of information and mixing that with some understanding, as well as by copying others (I guess we call that standing on the shoulders of giants!). From my experience it is rather difficult to find medical professionals like e.g. D W, whom, I would imagine (when he practiced), listened to patients, carefully weighed the evidence and came to a balanced conclusion, whilst still remaining open to other possibilities. More often than not thinking is a lot more conventional, process based and rote, with a lot of knowledge but less understanding and nuance.

Mix that in with the professional pressures, political pressures, financial pressures legal implications etc. discussed above and I think that it is easy to see why people would be less inclined to deviate from mainstream practice. In fact we should perhaps be grateful for anyone who is. Even in research I think that it says somewhere on this site that the Vanderbilt group initially started researching CFSi - but looked at MSi because of pressure in the hospital from peers. Even dedicated, committed people who are extremely talented have to exist in the wider group and secure funding for themselves and their staff, in order to help the patients that they wish to help.

Look at this and you will see that the medical research ship is an oil tanker that will only change direction very slowly. Very few people are dedicated enough to stick their necks out and deviate from the standard practice. It is actually true in other walks of life too. It is also the case that there are many people motivated primarily by money, career, etc. and some of them enter one of the most lucrative professions that there is. Those people, in particular, have no incentive to help us, and in fact doing so would be putting their goals in jepordy. As a former colleague of mine said about the chief executive of RBS - "Why are people suprised if he is rather motivated by money?".

But I think we also should be nuanced in our response to medical professionals, because what we have here is not a clear cut 'miracle cure', does not always work for everyone and probably addresses part of a very complex disease (whether you have CFS or MS) - which for some people results in a cure. It is great that it has worked for some - but because of the long term and up and down nature of the treatment it is not difficult to see how some people might be sceptical.

(D W please forgive the quality of my writing!)

Strange how things change: these 'expert' neurologists will only have been taught that MSi was a primary auto-immunei myelinopathy since sometime in the nineteen sixties.  David was taught this in the early seventies and so was my neurologist, who started his post graduate training at University College London, the very same year that I finished there in 1981.  Before that it was thought likely to be caused by an infection, but nobody could determine what infection it was. 

By the time that C pn was discovered to be pathogenic apart from some cases of walking pneumonia, in the late eighties, it wasn't even considered to be a possibiity.  But then, Drs Stratton and Mitchell in bacteriology and Professor Sriram in neurology at Vanderbilt University, started to think differently.

But now it is 2017 and things have not changed much..........................Sarah

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

The oil tanker is slowly turning though... At least for CFSi there now exist serious reserach groups looking at the problem: https://med.stanford.edu/chronicfatiguesyndrome.html . Give it another 50 years is not really an acceptable answer in the face of so much unecessary suffering but it may be the best we can do in this world...

Yours is a good post!

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

but I gave up working on the language...Wink

They weren't wrong about malpractice.  Malpractice law penalizes people who deviate from the standard of care, not people who follow a standard of care that happens to be wrong.   As a character in one of Moliere's plays, who was of a similar mindset, put it: "I stand up for Artemius. That he killed his patient is plain enough. But still he acted quite according to rule. A man dead is a man dead; and there is an end of the matter. But if rules are to be broken, there is no saying what consequences may follow."

How did we get to the point where it's right to be wrong?  

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

David, as I feared, effectively you're saying it's a combination of professional jealousyand avarice, and the ultimate, power belongs to the pharmaceuticals. I haven't ever worked in the profession but have seen the reps at work, and it.  it's tragic that altruism has, generally, taken a back seat.  Your work and that of the other professionals here is unusual.  Thank  God for you and the others who care more about easing disease than bank balances, I don't know if I'll improve overall, but i don't feel hopeless any longer and that means a great deal. Maybe society used the word vocation in lieu of correct payment, for too long, and is now paying the price ... And the pharmaceuticals.

MSi symptoms began in 2001 DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow

Not to minimize the injustice or unfairness of things, but honestly I think this has been characteristic of human society as long as it has existed. Its just that in our society altruism is still valued and seen as something to aspire to. There are many people who behave altruistically not because they believe in it, but as a personal marketing strategy - essentially to make them more attractive to other people, in order to acheive their goals in life. Unfortunately my experience in life has been that the more presitgious or lucrative the profession you work in, the more likely it is that you will find people who are essentially just out for themselves, even if they put over that a veneer of civil society in order to succeed. By definition, it's a disadvantage to be truely altruistic and in a competitive society, its not surprising that those who rise to the top (controlling standards of care, research funding etc.) are often not altruistic. It's kind of like evolution: the process that produces organisms like CPni. I agree it sucks...

Big pharma, some of the patient experiences many of us have faced, are all expressions of this underlying reality. But the reality has always been true - there has always been a tendancy in society to exploit those who cannot easily fight back - the poor, the sick etc. Since it's Sunday, and I'm too sick to go to church - humor me quoting from the bible:

'Do not say, “Why were the old days better than these?” For it is not wise to ask such questions.'

Ecclesiastes 7:10 (written around 900 BC).

We often think that things were better before the rise of big corporations, etc. but they weren't - probably things were somewhat worse particularly if you had MS or CFSi... What is amazing to me sometimes is that altruism even exists at all. The process that produced CPn has produced the people on this site, who care for each other, take time to support each other, courageously keep at life despite the many difficulties that they face, and for those of you who've recovered, take time out of their new life to help and support those who haven't and to spread the word to those who don't know. You guys are a shining example of altruism and a love of truth. In fact I would argue that these characteristics are preferable to the health and wealth of those who spend their life chasing money and prestige - as much as I long personally for, at least their health, and if I'm completely honest, enough wealth to not to have to worry about whether I will continue to hold my job down. Humor me once more with this one:

"Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres."

1 Corinthians 13:4-8

Remind you of anyone you've encountered on this site? Thanks to you all...

Thank you, all, so much for your responses. I hoped that my cynicism would be swept aside by your answers, but that hasn't happened. Your experience only bolsters my low opinion of the medical profession, DW et al and my own neurologist, aside.  If I had any doubts prior to starting the protocol, they vanished after watching the documentary, featuring DW and Sarah, which touched on the discovery of the pathogenic cause of stomach ulcer, of course, I knew the link had been made, but hadn't considered the wider implicatioms before. I get so angry about the domination of the pharmaceuticals, businesses with overpaid staff and shareholders,  I 'veseen them at work, and it's shocking! I will never understand such a love of money And a lack of humanity.

MSi symptoms began in 2001 DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow

My doctor(GP) shrugs... he is a Fellow of the College of GPs and an examiner for them I believe... However he does have empathy still... He says it is a dilemma for him... he is told to not give out antibioticsi except as per approved guidelines... but he has two patients with MSi that have taken the protocol and one now walks when she did not before... as he says - hard to argue with that!

Started NACi Sept'14... 100mg Doxyi Dec'14...  Roxi 13Dec '14 Supplementsi...

My neurologist isn't convinced by the protocol, but says he can't change the MSi course and I should follow the capi, he hopes he is  proved wrong, and wil support me, all the way.   My GP, wrote to him to request I be referred to a neuro-psychologist. I only know because my neurologist responded that, in his opinion, I don'tneed psychological help, but,if I felt I did, I would ask him for it. Then he copied me in! It seems your GP is wonderful, doesn't patronise and is to be cherished!  That can only help your recovery!

MSi symptoms began in 2001 DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow

JR and Sarah, I loathe the phrase "think outside the box" but i'm so glad others are unconventional!

MSi symptoms began in 2001 DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow

Jane, I'm glad that someone else hates that phrase, but am so glad that David found the Vanderbilt work just at the right time!  David sometimes bemoans not having found it sooner, but it hadn't long been in the public domain, I have to keep reminding him.  He had always had a feeling, even when in training, that there was more to MSi than auto immunity.  In September, 2003 he brought me back a packet of doxycycline and told me to take a full day's dose straight away.  I didn't think it would work but took it to keep him happy.  A couple of days later, there was no way I would miss a dose...................Sarah

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

Sarah, had David found the protocol earlier he might not have known to introduce a pulse! Of course he would want to treat you at the earliest opportunity  but devising the pulse has made the capi tolerable for so many more of us and has given life  back to many and, just as important, optimism to those of us who have such a long way to go But are buoyed by optimism! If I had my way he would be PM and you would be deputy!  It might be selfish, but, I'm so pleased it happened as it did!

MSi symptoms began in 2001 DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow

No, of course he wouldn't: he invented the pulse to make it easier for people.  Even Sriram does it now for a few people!

Please don't want David to be PM though, nor me his deputy: it wouldn't suit either of us and we would neither of us be abl to do our art!!

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

.

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

―    Abraham Lincoln<

Hi folks!

I touched on this subject when discussing Lucky Irene and the fact that she had been started on this combined antibiotic protocol a few years ago by her NHS locum GP. Her locum GP was going to publish and present the success that she'd had in treating Lucky Irene with this treatment. My advice at the time was that she should do no such thing and that it was essential to understand the principles. I was at pains to point out that successfully treating a patient for a serious and "Incurable" illness is not a defence. Doing the wrong thing is absolutely fine and to be expected, so long as it is accepted practice and everybody else is doing the wrong thing too. So long as they are all doing it wrong together, they are doing absolutely nothing wrong. Going off and doing the right thing can land a doctor in right hot water. The fact that the patient was cured is hardly a defence. It might not be the right hymn but so long as they're all singing the wrong hymn in the right key together, they will all get through the day.

If nobody ever does anything different, there will never be any scientific evidence to indicate a different way of doing things. Drug trials are only instituted to test new drugs. There is not really any great business opportunity in testing old drugs to do new tricks.

I know that my words will not please everybody and I know that some people might suspect me of being a cynic: because I am. At the same time, I know that there are some sound reasons why it has become like this. There has been some nutty practices that have gone on in the past.

G.

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

―    Abraham Lincoln<

Sarah, if only art was high on the political agends!

MSi symptoms began in 2001 DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow

SG, a cynic? Only a fool isn’t, sometimes at least!

MSi symptoms began in 2001 DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow

I wouldn’t want to be a politician. I am not that good at dissimulation. (I was always amused when a certain public school educated prime minister put on a fake glottal stop to appear demotic while electioneering in working-class districts.) I did get a mention in Hansard once, though: a Lords’ debate on the dismemberment of the Public Health Laboratory Service and the resulting risk of outbreaks.

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

Big topic, that.  As regards health care, I think it's largely the result of wanting it to be somebody else's problem, whether that desire is expressed as a government takeover as in much of Europe, or as a takeover by health insurance corporations as in the US.  Really, fundamentally our health care is our own problem, and nobody who we hand it off to is going to have anywhere near the same interest in it as we do.

That’s one reason i trust my neuroi, this highly educated and knowledgable man once told me I (as a person with the disease) probably knew more, about MSi, than he! Of course i don’t, but he was indicating his respect for his patients and accepting that, unless you have a disease, you don’t know how it feels, whereas my GP is patriachal and is arrogant about his superior knowledge! So, yes, i agree, our health care is our own responsibility, but, as I know so little, it’s good to have professionals and well-informed patients, on this forum.

MSi symptoms began in 2001 DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow

I hope it won’t be too far off topic if I share my own recent experience of professional unwillingness here.  Three weeks ago I woke up in the night feeling unwell and decided I needed to get a drink from the kitchen – I live in a bungalow, so it’s not far.  I remember feeling odd in the kitchen and the next thing I knew, I woke up on the kitchen floor, which was covered in water, as I must have been holding the water jug at the time.  I remember getting up from the floor, but then woke again on the floor going from the kitchen to the living room, with the floor all around me covered in broken glass, as I must have been holding the glass of water at the time. 

I know it sounds crazy saying it now, but I was too poorly at the time to call 999 and didn’t feel I could cope with hospital on my own.  I got back to bed and sat up, awake with the light on, waiting for morning and hoping I would survive.  I knew I’d bumped my head and there was an hour missing from when I got up, so I must have been unconscious.  And I felt battered, bruised and injured all over from the two falls.

I’ve never had a good relationship with my GP.  He’s been a hindrance rather than a help all along – determined to try to stop me seeing my Consultant because he has been supporting me taking abxi.  I did, at one stage, try to change GP, as I didn’t feel I could be worse off – but that proved to be a mistake, as the new one threatened to have me sectioned (for being a risk to myself), and report my Consultant, if I didn’t agree to stop abxi immediately.  It was at that point I had to move back to the original hopeless one.

I’ve never looked to the GP for help with CAPi, but I suppose, at the back of my mind, I did assume he would be there for me if I ever needed him for something else.  Big mistake, as they say!  When I phoned the surgery, they reluctantly agreed I could have a phone appointment, as I said I couldn’t get to the surgery.  I explained what had happened – collapsed onto a hard floor twice, bumped my head, been unconscious for an hour and injured all over, and on my own.  First of all he said that he often felt dizzy when he got up.  Then he said it must have been going up and down stairs which caused it – I enquired what stairs that would be, given that I live in a bungalow.  I begged him to come out to check me over, but he refused to visit and suggested I should make an appointment when I could get to the surgery.

Why do these people become doctors?  I wouldn’t dream of treating my worst enemy like that.  I have been feeling a bit overwhelmed by it all, as nothing like this has ever happened before and I’ve never injured myself to such an extent before.  I’m fighting hard against a sense of vulnerability which is there now, which hasn’t ever been there before and which I don’t like.  But the thing which has distressed me more than anything is the total lack of help and care from the GP.  ‘Professional unwillingness’ seems to sum it up all too well.

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Can I ask how you feel now? I would say I never collapsed but I would have had very bad spells of dizziness where I would feel like falling down so I would have to hold on to a wall or something.... just to stay up right! For me I believe  was pooling and or blood was too thick. It is sometimes seen in fibromyalgiai like smokers blood... I treated this by thinning my blood taking Allicin liquid... on top of been a great anti viral/ anti bacterial/ anti fungal agent it also thins the blood... within a few weeks I returned to normal and that was years ago.

only a suggestion

hope you are feeling better now

regards

The Greatest Risk of all is Not taking the Risk...

Boadicea,

not off subject at all, but, pertinent!

i’ve blacked out, in the past and low blood pressure was to blame! My dog always tells me when my BP is too low, i guess he can smell things aren’t right, and refuses to walk with me!  I realised modafinil (provigil) lowers BP,  Siberian ginseng (it nust be Siberian, which is known as an adaptogen) raises it, as does liquorice and drinking water! Alcohol lowers it,  believe me, i like a drink, i’m just aware of it and accordingly, give myself periods of temperance. But i don,t know how your BP is?

MSi symptoms began in 2001 DXi RRMSi in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow

Boadicea, am I right in this?  Your GP refused to come and see you but wanted for you to wait until you felt well enough to go and see him?  Words fail me.  He certainly is someone in the wrong profession!  Are you on the mend now? Please let me know................Sarah

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

Comment viewing options

Select your preferred way to display the comments and click "Save settings" to activate your changes.