Why do we keep asking, Why?

[Poppet11]

Just reading Martyn's latest blog post:

Yet again the question which seems to be being asked is, "Why do some people need injections more frequently than every 3 months?"

Apparently the researchers are asking this question, the PAS, Martyn, Carrie-Ann...

Why is this question continually being asked when we know that there is no evidence to prove that injections every 3 months 'do' work. None.

So why are they constantly asking why injections every 3 months don't work?

IF this illness was primarily a blood condition which, eventually, caused either anaemia or neurological damage, then the question could, possibly, be valid. It would make sense. If it was a blood condition and the blood was being repaired and the patients were still showing symptoms of anaemia even while their levels were 'normal' (and we all know the problems there) then it would have some logic to it.

BUT, this is not a blood condition, this is a metabolic condition causing DNA dysfunction and cellular damage - and the blood, because it is cells - can also be affected.

But treating the blood does not mean ALL cells are treated.

Neither does it mean the damage to cells originally caused by the deficiency is repaired.

I'm starting to feel like I live in the Twilight Zone.

Should not the research scientists be understanding the basic principles of a B12 deficiency before they start discussing how to investigate why current B12 protocols don't work?

If they did understand it, and they understood that the illness is progressive and different people got their deficiency picked up at different stages and therefore had differing levels of neurological damage - some of which was repairable and some of which wasn't - then would there really be a need to ask the question, Why?

We are all different, we all have differing levels of damage, we all need different levels of treatment.

There are trillions of cells in the human body. We are made up of cells. Cells, water and a bit of electricity.

Skin cells, blood cells, brain cells, tissue cells - we are cells. And when you get a bunch of the same type of cells together they form the right stuff - the muscle, the nerves and the brain and the skin.

And a lack of B12 not only stops those cells from reproducing and multiplying (and cells produce millions more each day) but it damages the existing cells.

And every person who suffers from B12 deficiency has a chance that some of those cells will be damaged depending on how long those cells have been deprived of B12 for. Which ones? How badly damaged? How would I know? How would anybody know?

Of course people will require different levels of treatment. Of course if enough cells have died then certain parts of those people will have died also.

How can one standard treatment regime possibly cover all the people and all the damage?

... and where is the urgency? No one knows how badly each B12 deficient patient has been damaged by the time they are diagnosed. No one knows how far away each patient is from permanent injury or even death because no one knows how long each person has been suffering cellular dysfunction.

If you have one person who has lost the use of their legs and is, for example, 2 months away from death, is it reasonable to ask them to wait 3 years to wait while scientists have a few jollies and a chat about why they need B12 injections more regularly than every 3 months?

The problem here is that we are not having to prove people need injections more than every 3 months. Because that question is quite easily answerable as it is with patients who have any neurologically degenerative condition and get assigned a dosage of medication to suit their own individual needs.

The problem here is that no one really believes B12 deficient patients are actually ill. That is the problem.

And that problem exists because no one really understood the illness. They thought it was a blood condition which was quickly and easily treated.

And that includes the scientists.

And if they are still sat around tables having chats about the same thing - then it tells me one thing - the scientists still don't understand this illness.

[Hidden]

Its beyond me why its still at the discussing stage, I've been with PAS since 2006, the main issues for members then was frequency of injections, that was the main wish for research then of the members; money was given for research, it obviously never came up with any answers. Genetic research obviously never came up with any answers. But then it is weird to see how different each person is, how say all in my family on B12 have different serum B12 levels, and very different issues, very different needs. I just do not understand that its so obvious to me that treatment should be geared to the individual, why this is not obvious further up the scale...

[Poppet11 in reply to Hidden]

I didn't know you'd been with the PAS that long, Marre.

The thing is the genetic research is looking at the 'cause' of B12 deficiency. Fine, great, let them get on with it and let us know if they find something.

But how does it help people who are suffering now and deteriorating without getting the proper medication?

The research that we are talking about is trying to prove what? That the current protocols which aren't based on any kind of evidence, don't work?

You have to establish first if the current protocols are sound before you can attempt to establish why they aren't working. And no one has proven they are sound.

It's been a mess-up from start to finish.

They got it wrong. They thought it was a blood condition which resulted in a fatal anaemia. They thought the blood was the primary cause of the problems. It isn't.

It's a metabolic dysfunction which MAY cause blood problems.

They are still looking at it as if the blood is the primary problem and ignoring the fact the rest of the scientific world is realising it is a neurological condition and wondering what the heck they are playing at.

[Hidden in reply to Poppet11]

Think it actually was 2005, seen PAS grow from first little forum to many others. Can only admire that Martyn and others can still keep going. I have given up on anything changing.

[Poppet11 in reply to Hidden]

It is a long time!

It won't change unless we ask the right questions.

To be honest I have more admiration for the patients who don't get regular jabs and are managing to survive. They are the true heroes in all of this.

Martyn was lucky, he not only got his deficiency picked up before he suffered permanent physical injury but he managed to be able to afford self medication and to be able to afford to give his job up.

What would have happened to him if he had been on the receiving end of the 3 monthly jab issue?

I don't think he would be too keen to wait a few years or a decade or two?

[Hidden in reply to Poppet11]

No I do not think Martyn was just lucky, has damage and worked hard at getting the treatment he has now. He works relentlessly spreading the same message to as many as is possible. I've spent one day representing PAS, with Martyn at a post grad med conference in London, about long term conditions, it was exhausting, years ago. He still keeps going, spreading the same message. I do not have that commitment. I will always say I respect him for the work he does for PAS. And I know he does not think much of me.

I'm also aware from another campaign, that its all a balancing act, money wise, and judging what is in the benefit for the community as a whole...not one little community, there are numerous other worthy little communities...He who shouts loudest may get it all? Who knows.

[Poppet11 in reply to Hidden]

No, Martyn was lucky - he got it picked up relatively quickly compared to most people. And I have no idea what damage he has got, I've never seen him specify it. I don't even know how he achieved his diagnosis - whether it was picked up from low B12 levels, or anaemia - I simply don't know.

Martyn was very lucky to get his condition acknowledged and treated in the way it was.

Raising awareness is not just raising profile. It is raising the right awareness and representing people and their needs.

If we are still asking 'why' then something is going wrong here.

This no longer should be about raising money - the answers relating to diagnosis were answered in the BMJ paper.

I'm sorry he doesn't think much of you, Marre. You have been very loyal and put a lot of your spare time into the forums and trying to help people on a daily basis - and you have absolutely nothing to gain from it.

[Hidden in reply to Poppet11]

Martyn has damage (no way could he keep his previous job, he falls apart after 2PM) and his road to recovery was not smooth, not complete, fortunately he has a sister who is a nurse who initially helped him get diagnosis, all not smooth at all from what I remember.

He improved a lot with methylcobalamin infusions, I remember him being over joyed at feeling his legs; but that was years after diagnosis, his road was not smooth. But its not for me to tell his story.

I have lots to gain by staying involved, PA/B12 def runs in my family, both my daughters were fortunately diagnosed early. It is essential to me that better understanding and treatment and diagnosis/ guidelines are achieved for my kids and their future and their kids, its in my interest by all means!

[Poppet11 in reply to Hidden]

Marre, we all fall apart after 2pm, but that is fatigue it is not neurological damage.

Most of the patients are still having to work.

He may have had some neuro injury prior to getting treatment but that damage was, it seems, reversed with treatment.

Many, many people do not get it reversed, it is permanent.

No, it is not for you to tell his story, but it would help more people if he did.

If he has permanent neuro damage people need to know exactly what it is and how that was achieved.

They need to know how his diagnosis was achieved, whether his sister helped him or not - the blood levels etc - specifics.

Because that is how you get other people diagnosed. That is evidence.

I meant personal gain, Marre. I know it means the world to you to stop bad things happening to the people you love.

[Hidden in reply to Poppet11]

Ah found it, here is his story:

martynhooper.com/?s=my+story

[Poppet11 in reply to Hidden]

I've seen it, Marre. Find me one specific in it.

One blood level - I don't even know which blood test he had taken, apart from the IF test, which I believe he had done 3 times (from previous posts he made) and now we know that the IF test throws the alternative result if it's done within a certain period of time of B12 treatment.

Although I think he had some kind of other test as well related to IF.

There are no specifics. I know his GP thought he might have subacute but don't know if he ever achieved this diagnosis or, if he did, how he achieved it.

[Hidden in reply to Poppet11]

Ah, oh well. He does what he does, we do what we do, others do their thing. Hopefully something good comes from every ones efforts, and time!

[Poppet11 in reply to Hidden]

You didn't find any specifics, did you?

Yep, it does tend to get to be an ah, well.

[cdele6b12]

real answer would be in the mthfr genes and auto immune plays a role I need shot every three days to a week. pills and tabs don't work or work for about a hour

[Poppet11 in reply to cdele6b12]

What's the point in them looking at genes when they don't even understand the role stomach acid plays yet?

Let's face facts they didn't know up until a couple of months ago that DNA damage preceded blood problems.

And what exactly is auto-immune - apart from a general descriptive term of the body starting to attack itself.

Which comes first the chicken or the egg?

We've just spent 8 decades trying to fight our way through the anaemia rubbish and now we've got the auto immune stuff to start on - buzz words again. And all makes it sound so dramatic 'pernicious' 'auto-immune.' B12 doesn't sound half as exciting yet it causes your spinal cord and brain to solidify.

Let's face it - most people think B12 deficiency causes fatigue.

[cdele6b12]

howirecovered.com/active-b1...

however I don't agree with everything he says but a lot of good info

[Poppet11 in reply to cdele6b12]

Nice big fancy words they use, don't they?

Don't they make it look important?

And I'd just like to state my case about the fatigue - it's the first thing he mentions.

This bloke hasn't got a clue what B12 deficiency really does.

[Poppet11 in reply to Poppet11]

I don't know whether this is going to work - but I'm putting in the link to another thread. Scroll down until you get to Engels link.

healthunlocked.com/pasoc/po...

I'll just see if it works.

[Leilanilea]

I'd like to add some frustration to the discussion. I have B12 deficiency, live in US, and have found that my doctors in a Health Maintenance Organization, Kaiser-Permanente, are very good about redognizing the need for monthly maintenance (cyanocobalamine). My other main illness has been NTM, or Non-tuberculous Mycobacterium of the lungs, specifically MAC (Mycobacterium Avium Complex). Many people have never heard of it, and it was thought in the past to occur mainly in men, alcoholics, and smokers. However, it has been shown in retrospect, that since approximately the 1950s the incidence has been growing exponentially all over the world and it is a disease commonly found in older women without history of tobacco or alcohol use. It is found in water, soil, and water pipes, and is not contagious. It frequently occurs in conjunction with bronchiectasis, a condition wherin the bronchial tubes lose elasticity and fluids collect, promoting bacterial growth.

Sorry if I've bored you all but here, finally, is my point. I recently had a mild heart attack. When the young and very knowledgable internal medicine physician was taking my history, and I talked about NTM, he asked me where I got it from, had I been on steroids? This, because many people think one's immune system must be compromised in order to contract the disease (sort of like thinking that one must have abnormal hematology values if they have B12 deficiency.) The medical field is behind on questioning the possibility of NTM when they come across a woman in her 60s, for example, with chronic cough and exhaustion. We sometimes go years before correct diagnosis is made and then the three antibiotics that may or may not make us better are poison to the system with horrible side effects.

Thanks for listening, on Inspire.com there are so many people with this story, and it always reminds me of the PAS site.

Best to you all,

Leilani

[Poppet11 in reply to Leilanilea]

Thanks for that, Leilani, you make a good point.

You know what I sometimes think - modern medicine has tried to run before it can walk.

It doesn't truly understand much, misses a lot, is very selective on how it interprets things.

I think most of it is to do with the death of observational medicine, lack of patient input and, dare I say it, the internet.

In short, I think it's a mess.

[Chancery in reply to Poppet11]

Poppet, you make the same point repeatedly on here, about B12 deficiency being metabolic not a blood disease, it makes me wonder, have you ever discussed this theory with a specialist or consultant, face to face? If so, what did they say?

[Poppet11 in reply to Chancery]

What do you mean by 'theory?'

If you read the BMJ article it tells you at the start. It's a metabolic dysfunction.

Why would you think it's a blood condition?

I'm not being funny, but have you actually read the PDF you downloaded? Where does it say it's a blood condition? The blood condition is a 'possible' result of the metabolic dysfunction.

I'm never quite sure whether people don't read the links, don't comprehend the links, or would like to be suffering from something a little more impressive sounding than 'b12 deficiency'?

If you go and look at the film I put on the other day you will see what it does. Can we have this illness taken seriously for once, please and especially by the members who are supposed to support each other in the face of ignorant medical professionals who keep insisting symptoms such as the people suffer in the film are 'all in the mind,' and it is only a 'blood condition.'

Please try and understand what this illness does and how it does it. Trivalising it is helping no one.

[Chancery in reply to Poppet11]

I used the term theory judiciously because the medical profession, as in, on-the-ground GPs, patently doesn't agree with you - as you keep pointing out. And yes, I read everything I download, and by doing so I see that said medical profession still believe that if the blood count of B12 serum is high then it is considered you are out of the danger zone. That's not me making it up to annoy you, it's just a fact.

You interpret this data differently from the entirety of the medical profession and that's why I wondered if you had ever put your theory to them, as opposed to giving them their own theory back - which would be pointless.

Quite why you are yelling at me when I'm on your side, I do not know. I'm of the opinion that the entirety of Western medicine must have a reason - no matter how insane - for upholding their theory as opposed to yours. I just wondered if you had ever presented someone at the top of the profession, like a specialist or a consultant, as opposed to a patient on here, with the premise of "I believe this is a metabolic condition, not a blood problem. I believe that the research shows this plainly. Why, therefore, is the medical profession still treating this like a blood disorder?" That seems a reasonable question to me.

If you don't want to discuss this, don't discuss it, but I'd appreciate it if you didn't blame me for the faults of the medical profession.

P.S. And just as a point of interest to underline the medical profession's take on this, I had further blood tests taken this morning for a B12 count. My doctor had to write a long explanation to the lab that we were testing it for neurological damage because, and I quote, "the labs can get antsy and refuse to do it because you're not supposed to test too often for B12". The doctors are patently being told not to run up money on tests for patients if their B12 is (theoretically) in the high zones. If that's not an open statement that they believe it's all in the blood I don't know what is.

[Poppet11 in reply to Chancery]

I haven't got time to go over old ground.

If you read that report look for the bit that refers to measuring B12 levels after treatment and relative effectiveness.

I'm not interpreting this data differently to the medical profession. The responses to the report are there to be seen as were the CME responses.

If you've spoken to a medical professional who has seen it and wants to comment, then fine.

If you want to provide us with your clinicians comments relating directly to it, I have no problem.

You're clearly just throwing about personal comments designed to undermine - and they have no foundation in fact.

[Poppet11 in reply to Poppet11]

I won't be putting another link to that report up - but I am requesting you stop writing such nonsense as "You interpret this data differently from the entirety of the medical profession..."

Many people have now read this report or at least the abstract and can clearly see that the accusation is designed to provoke.

I'm busy working, you will excuse me if I don't spend more time fending off ridiculous and unfounded allegations.

[Hidden in reply to Poppet11]

Poppet, Chancery asked you questions many others will think, you can not just shoot her down like that with out giving a reasoned answer.I read no "ridiculous and unfounded allegations". We all are busy!!

[Poppet11 in reply to Hidden]

This "You interpret this data differently from the entirety of the medical profession" is a ridiculous and unfounded allegation and it will stay the same.

I'm busy trying to earn money, which is more important than answering Chancery's allegations at this time.

[Chancery in reply to Poppet11]

I wasn't asking you to go over old ground, or for a justification of your opinion, Poppet. I was asking you if you had ever discussed it with a professional, face to face. You haven't. That was all you had to say.

However, if you would prefer to believe I live to "trivialise" my own illness and "undermine" you - knock yourself out. I'll leave you to it.

[Poppet11 in reply to Chancery]

I never said I hadn't.

You are trying to undermine again.

I have spoken with several. I do not expect you to ask me to reveal private conversations.

Good luck with whatever illness you think you have got.

[Hidden in reply to Chancery]

Now I know Poppet is going to shoot me, but in my case my B12 def was and felt like a blood condition. I know I went to GP numerous times saying I am aneamic, cause that is what it felt like to me. As the only issues I've had most of my life from birth onwards was (iron def) anaemia, I know what it feels like, and being B12 def feels like being iron def, but with extra weird things like loss of balance and jelly legs. That is how it feels like to me with the normal tired, dizzy and out of this world feeling, loosing weight, no appetite etc, not being part of the here and now. I've always associated that with being anaemic, and usually was iron def (microcytosis) to then move to macrocytosis. So in my case it was all visible as a blood condition. And once bloods returned to normal I was alright (with standard treatment I was not , but it showed in bloods as in MCV stayed well over 90 and serum B12 just stayed low). So I believe we all should not move into one size fits all in diagnostic terms either, some do have a blood condition, others may have a metabolic condition..its again a personal difference, that counts for each and every one individually. I hope I make sense here. Marre.

[Poppet11 in reply to Hidden]

The scientific facts remain, it's a metabolic dysfunction which results in a blood condition. The evidence is there.

Some people get it picked up when it is an anaemia, some develop further.

But do you know what I'm wondering ... I'm wondering why there are postings on this site from people suffering from Trigeminal neuralgia, the condition which Chancery has been diagnosed with, yet there are no postings from her about this condition in those threads?

[Poppet11 in reply to Poppet11]

In fact, if Marre thinks it's a blood condition and Chancery thinks it's a blood condition, who am I to argue with either with of them?

Chancery, you go with the medical professionals - and good luck with Trigeminal Neuralgia!

[Hidden in reply to Poppet11]

You are to busy to make sense now, it is Chancery who started most topics about TN in this forum, see:

healthunlocked.com/pasoc/po...

And there are more. It is just an other B12 issue where B12 treatment possibly can help TN. and I sure hope it will help Chancery. And all others that read here from different forums.

[Poppet11 in reply to Hidden]

But Chancery thinks B12 is a blood condition - and so do you - and her levels, all of them, are normal.

I've pointed her in the direction of the latest medical research saying it's a metabolic dysfunction. She says that's my interpretation of it.

So be it.

[Hidden in reply to Poppet11]

Chancery is asking, asking you why you say what you say. Not every one sees the article as clear as you do. I can only say in my case it seems obvious as a blood condition, for me personally, in others it seems obvious as a metabolic issues (normal serum b12, but to high MMA, and or homocysteine etc) and there are numerous other uses for B12 in particularly pain, diabetic neuropathy etc, to just name a few. It just looks like you are so much concentrating on one issue, which I am sure is a right issue, but that there are just more issues. The best way I can explain what I think any way.

[Poppet11 in reply to Hidden]

It will not help Chancery she thinks it's a blood condition. How could a blood condition possibly affect her brain other than it not providing enough haemaglobin?

[Poppet11]

They, the Powers that Be, aren't really asking us 'why' it happens, what they are asking us is to prove it 'does' happen.

They don't believe that symptoms return or remain after treatment.

That's what they are really asking.

In which case they should be pointed to the video of Murphy and Minot's patients to prove that it 'does' happen even when blood levels have been returned to normal and to start examining the issue of 'why' patients aren't being treated adequately.