The 7 Part Series on Autoimmune Diseases Everyone Should Take the Time to Watch

While there may be multiple approaches that can ameliorate auto immune conditions (N.B. conditions not diseases), due to the complexity and multiple operating mechanisms of the immune system there cannot be one silver bullet as stated in the intro (that's a logical impossibility, at least unless you consider extreme techniques such as amputation at the neck, and all these have significant side effects!).

That's not to say that there isn't good and useful information here buried in the hyperbole.

Pretty broad stretch of definitions of 'auto-immune' disease here. Many of those listed above would not conventionally be thought of under that bracket. MS, PD, alzheimers, type 2 diabetes for example have very different pathology from each other and from the more conventionally defined auto-immune diseases such as thyroid dis, type 1 diabetes, rheumatoid etc . Almost every condition involves some part of the immune response, including simple trauma for example. Does not make it auto-immune

I do not think many doctors or researchers would consider these under a single umbrella. The idea that 85 doctors and researchers ia a large number is also pretty hilarious when you consider how many work in these fields combined!

I did not get far enough in to find out what they were selling but my cynicism gland tells me I just needed to wait a little bit longer. I'll wager a food supplement or gut microbe solution. This sounds vaguely like the ruinous (and proven negligent) nonsense peddled by Andrew Wakefield re MMR vaccine that has resulted in him being struck off-and making a very nice life for himself in the USA talking about gut immunity for example. I may be wrong

I find claims that include the statement 'what they (er..who?) are not telling you about the simple cure for all your problems' stretch my credulity. Life tends not to work like that.

Sorry. I'm not being very generous today!

Bruce

My approach is watch first, assess later. It's too early too pass judgement, the series hasn't even started. One thing is clear, though, the established medical profession often does have too narrow a view on illnesses and in many cases standard medication does more harm than good. I think we would all be well advised to keep an open mind - in general I mean. Let's see what will be presented and form an opinion based on that. Of course there will always be doubters, no matter what is said or presented, not least those with a vested interest, e.g. large pharmaceutical companies and doctors who have got something to lose. On the subject of 85+ experts, what use is it to have thousands of experts following a wrong path? Often times it is one person or a small group of experts who discover new approaches or even cures. Looking at it that way 85+ swimming against the tide with data to back it up seems worthwhile enough to me. All IMHO of course. However, just to be clear, I am not leaning either way, just looking forward to what will be presented.

Best

tp

Yup just did bit of searching.

He is selling the 'leaky gut syndrome' tosh that Dr Wakefield champions too. As ever tiny shreds of fact surrounded by one great big marketing fluff to sell gullible people snake oil.

If people genuinely believe that there are simple, totally safe panaceas out there that conventional medicine is deliberately hiding away out of self interest (but can be yours for just a small downpayment per month) then so be it.

Shame that when modern medicine falls short (as it does very often as we all know) these charlatans capitalise on the gaps and rip people off.

Google 'leaky gut syndrome' and see how many pages you get selling you stuff. Now see how many come from any respected medical journal. The history of medicine is littered with similar so-called syndromes that come and go.

http://www.nhs.uk/conditions/l...es/Introduction.aspx

These people make me angry. Not those that get taken in (who are often sick and desperate), but those that make money out of it and those that damage people badly by abusing their trust-see again Dr Wakefield. We are still reaping the effect of the harm he caused,

Of course the advocates of these new wonder treatments will just accuse me of being a vested interest, not interested in new ways of thinking etc.  I'll take it on the chin.  When the ratio of believers to unbelievers is several million to one I'm happy to be in the majority.

Watch carefully and then ignore the emotional hyperbole and look elsewhere for independent facts that stand up to scientific scrutiny. Remember; these people are selling you something. I'm not.

Bruce

Such is the post-truth world.

Chris

Some leaky gut effect (whether you consider it a syndrome or not) is a normal part of life for omnivores and herbivores - it's part of the constant chemical warfare of evolution between plants and animals.  If you fix that you'll degrade the ability of the gut to absorb other nutrients.

I stand with Bruce on this.

Ok Bruce, opinion formed without having watched anything, without knowing what is going to be presented. All information, which is going to be presented, even if true and helpful for people, dismissed with a single off the cuff broad statement. That's your prerogative. I prefer to keep an open mind. I guess it's each to his / her own. 

Best

tp

There is a very complex relationship between the gut microbiome and immunity and health/disease.

This is a HUGE step from saying that LGS is the one-for-all answer with a simple cure (for a convenient monthly downpayment...).

Google 'Morgellons', I would say for a laugh but in truth it is very sad.

Bruce

totemphile posted:

Ok Bruce, opinion formed without having watched anything, without knowing what is going to be presented. All information, which is going to be presented, even if true and helpful for people, dismissed with a single off the cuff broad statement. That's your prerogative. I prefer to keep an open mind. I guess it's each to his / her own. 

Best

tp

er no, I have seen this stuff (I know the basis of his theory-it is not remotely unique and you can find out what he is selling before you see the series by a bit of searching) presented multiple times in multiple ways. I form my opinions based on lots of sources, not from an extended advert!

Will you do the same? Please!

If then you come to agree with the hypothesis they float then I'll respect your conclusions. I'll leave it now. I don't want to fall out. I hope you find the series intresting.

Bruce

I have inflammatory bowel disease, and take mesalazine tablets, without which I'd be in a right pickle. I also take probiotic and prebiotic capsules, which have been shown in controlled tests to make a difference. They certainly seem to help me, over and above the positive benefits of the prescription medication. I never knew that IBD was an auto immune condition though. 

https://www.crohnsandcolitis.o...matory-bowel-disease

Might be helpful, some good information.

HH, IBD can be autoimmune, it can also be complex in causation.

Don't worry, it's most unlikely to be a causal factor in rheumatoid arthritis, type 1 diabetes, MS, hypothyroidism etc., etc., etc.!

Keep to the treatment that your doctor prescribes and the diet (including the gut flora support) that suits you; unfortunately there's unlikely to be a silver bullet for such complex conditions.  Bruce's link is a good place to start for additional ideas.

Biologists and the medical profession will slowly work out better ways to manage such conditions.

Bruce Woodhouse posted:

These people make me angry. Not those that get taken in (who are often sick and desperate), but those that make money out of it and those that damage people badly by abusing their trust.

Bruce

 

 

Quote used out-of-context,  don't disagree with Bruce.

That is precisely what happened to me when I put my faith in the traditional methods and protocols of American medicine and insurance.  When I found the courage to demand a different approach and searched for a qualified person I fortunately found a medically trained nurse practitioner who shares her knowledge and allows me to make choices.  I am responsible for my own treatment choices now.  I suffer from some of the op issues and several far more serious.  Thanks for the op, I will explore to see if I can learn something.

Hungryhalibut posted:

 I also take probiotic and prebiotic capsules, which have been shown in controlled tests to make a difference. I never knew that IBD was an auto immune condition though. 

I have no idea what probiotic you take, but I've never read or heard of anything that has been shown to make a difference. There is VSL3, but even that was a test of a small number of people.

I agree with Bruce. There so much nonsense out there dishing out miracle cures to people who are unfortunate enough to have an illness and are desperate to believe anything.

The Crohns & Colitis association (I've been a member for years) funds a lot of research and is very positive about the impacts of probiotic and prebiotic, which seems to work for some people, including me. I get mine from Boots on 3 for 2. 

Have to disagree Hungryhalibut. I've found those sites are full of people claiming, hoping, looking for things that work for them. It's a terrible disease and the only way of battling it is with a good, clean diet with the obvious limits on the nasties (alcohol, etc), but then this is what we all should do anyway. Gluten, probiotics, etc.... (you'll know the list) doesn't have any affect. The only thing that seems to work is scietifically proven meds (like Asacol, etc) and then they need to be taken orally or suppository relevant for the problem. This is not quite as simple as gps or gastroenterologist advise sometimes. It needs your input and dedication.

As a guide, any probiotic not needed to be refrigerated is pretty much useless.

I've just quickly jotted down a few points above, but as you're a suffer, you should know what I'm on about. If you really want to take probiotics, you really should be onto VSL3.

Thanks, that's very interesting. Are you are a doctor or have professional knowledge on this?

Daily Mail fodder...a germ of truth spun into a miracle cure. There's one every week.

G

I spent some 5 years going through various diagnosis procedures with neurological doctors to try and determine a condition I have, that of having my left side - arm, hand, leg and foot being considerably less dexterous and strong than my right side. Neurological doctors because at the start after an MRI scan showed I had a lesion in my brain...

After going through and up in the professionalism of these doctors they decided that I'm an enigma. That my condition is like that of Multiple Sclerosis but after going through MRI scans over that 5 year period with no other evidence of other episodes - have not given me a diagnosis as such but said it's like a singular Sclerosis from an episode of autoimmune.

As such it was recommended that I didn't take anything for it that was considered to make me better.

count.d posted:

I agree with Bruce. There so much nonsense out there dishing out miracle cures to people who are unfortunate enough to have an illness and are desperate to believe anything.

It never ceases to amaze me how many people will choose to ignore scientific medical evidence and yet accept any old tosh from people clearly out to make a buck or two, or who believe in something posted on Facebook...I watched my brother-in-law struggling on for years with a completely b*ggered knee, strapping bits of copper on and taking quack remedies. Of course when I suggested he went & got it replaced there were tales of Mr or Mrs so-and-so down the road where it went wrong, choosing to ignore the statistics. It was only when my knee gave up the ghost & he saw how successful my replacement was that he took the plunge and now bitterly regrets all the wasted years stuck in a chair.

I suffer from rheumatoid arthritis, for which, after trying many types of medication, I now take (or rather, inject) etanercept, a biologic medicine which has proved spectacularly successful in suppressing my symptoms. I arrived at this point after following the logical, scientific progression of treatment from heathcare professionals, and chose to ignore the many well-meaning folk with their "remedies". I don't mean to dismiss alternatives out of hand, but if you aren't careful you can be deflected off the best path for you as an individual and waste a lot of your life for no purpose.

Hungryhalibut posted:

Thanks, that's very interesting. Are you are a doctor or have professional knowledge on this?

No, I'm not a doctor. It's a shame one can't do private messages here anymore.

Eating well and being active help coping with colitis once you have it. Constipation has been linked to it, so eat plenty of fibre and drink plenty of fluids. Having a 600ml fresh soup every day for lunch example, is a very good way to keep a healthy colon. There's no food that caused it and no particular food that has been proven to make the colitis worse, but gluten and dairy have a very, very small chance of being linked. These are both fairy easy to avoid, as there are plenty of substitutes. 

The VSL3 comes in sachets which each contain billions of bacteria. There was a study done which found taking very high amounts of these strains of bacteria showed a benefit to the colon of someone with colitis. However, this is based on taking 2 sachets per day and if you work out the cost, it becomes expensive. As I said earlier, unrefrigerated low-count probiotics from the usual suppliers, are a complete waste of money. Bear in mind that probiotics are unregulated, so anyone can sell you a white powder that could be good, bad or do absolutely nothing for you.

Do you know how high your inflammation has risen? Is it within 7" or spread higher?

Just a note:  If you do pursue an exclusion diet (e.g. dairy), then it's very important to do the research to ensure that you're getting all the required micronutrients from other sources.

Bruce Woodhouse posted:

totemphile posted:

Ok Bruce, opinion formed without having watched anything, without knowing what is going to be presented. All information, which is going to be presented, even if true and helpful for people, dismissed with a single off the cuff broad statement. That's your prerogative. I prefer to keep an open mind. I guess it's each to his / her own. 

Best

tp

er no, I have seen this stuff (I know the basis of his theory-it is not remotely unique and you can find out what he is selling before you see the series by a bit of searching) presented multiple times in multiple ways. I form my opinions based on lots of sources, not from an extended advert!

Will you do the same? Please!

If then you come to agree with the hypothesis they float then I'll respect your conclusions. I'll leave it now. I don't want to fall out. I hope you find the series intresting.

Bruce

Sorry Bruce, but you haven't seen this "stuff" because at the time of your posting the series hadn't even aired yet. What you did was you googled Dr. Tom O'Bryan, saw that he also talks about leaky gut syndrome, chucked him into the same bracket as Dr Wakefield (who I don't know) and concluded that all that is going to be presented must be rubbish. I find this approach not very helpful and to be fair it epitomises the kind of cynical approach taken by quite a few people here on this thread who also posted their negativity. Without, I presume, knowing anything or very little about the subject of autoimmune diseases or the author, let alone what is going to be presented. 

Now, maybe you are right and everything is rubbish. I am in no position to determine this because I am not an expert on the subject. What I do know, though, is that many forms of illnesses are a very complex matter and I would put autoimmune diseases into this bracket. I also know that often times established medical approaches do more harm than good. Let's take cancer as an example. For a very long time the standard procedure has been chemotherapy, in most cases it still is. However, there is a huge debate, even within the established medical profession, as to how beneficial this approach has been or still is. I believe it is a fact that in reality doctors know very little about what chemotherapy works for what patients and what types of cancer or whether it is going to work for them at all. An increasing number of doctors are coming out stating that chemotherapy, on the whole, has done very little to nothing to increase patients' life expectancy. Worse still there is documented proof that often times chemotherapy actually leads to the development of other forms of cancer. Not least because it completely ruins the body's own immune defence system. Some sources state that 97% of chemotherapy is simply not working. Let's not get hung up on percentages but I think it is fair to say that for many patients chemotherapy actually does more harm than good, especially if you bring quality of life as an important parameter into the equation. So it comes as no surprise that many oncology doctors themselves would not consider chemotherapy, if they were diagnosed with cancer. Yet it remains the therapy of choice for almost every patient regardless of the dire side effects. You wonder why, well it is a multi billion dollar industry, that's why.

My mother was diagnosed with colon cancer a few years ago, luckily at a very early stage. She has had an operation and a small part of her colon removed. Her oncologist advised her to consider chemotherapy, she refused to do so and opted instead to change her diet and incorporate a whole range of dietary supplements, which have been demonstrated to have cancer fighting attributes in various clinical studies. So far so good, all of the follow up tests have been negative up until today, touch wood this will continue. My uncle, i.e. her brother, is the chief physician of an HIV clinic here in Germany, they have a fair number of cancer patients, when asked whether he would start chemotherapy himself, there was a long silence at the end of the phone line. 

What annoys me is that so many people are so quick to write off anything that falls outside the established medical approaches. They point to the dangers of taking your illness into your own hands and run down anyone and everyone highlighting alternative views, no matter whether they are well founded or not. I agree there are a lot of people out there who are trying to make money off people suffering from complicated illnesses. That's bad! But it doesn't mean that anything outside the established medical approach does not work or is indeed rubbish. Quite the contrary. Western medicine leads to hundreds of thousands of deaths every year worldwide, these include deaths from simple medicine such as paracetamol to botched up operations by incompetent doctors. Just because someone studied medicine at university and puts on a white coat does not make him automatically a good doctor. Or indeed someone who has the intellectual capacity or willingness to look beyond what he or she has been taught. Nutrition is a big field with direct relevance to health, yet western doctors spent possibly a couple of months at best on the subject while at university. That's ridiculous. 

The series presented here brings together views on autoimmune diseases by (apparently) some of the leading experts in the field. They include medical doctors, health practitioners and patients' views from around the world, including the US, UK, Spain, Portugal, France, Germany, Scotland, Sweden, Denmark and more countries. I am not going to list all 85+ experts here but they include in no particular order people such as:

- Daniel Leffler MD, MSDirector of Clinical Research The Celiac Center at BIDMC, Associate Professor of Medicine at Harvard Medical School

- Jose Manuel Fernandez Real MD, PhD, Director of the Diabetes, Endocrinology and Nutrition Unit at the University Hospital of Girona, Catalonia, Spain

- Johan Frostegard MD, Ph.D, Prof. of Medicine and Head of the Unit for Immunology and Chronic Disease at IMM at the Karolinska Institute, Stockholm, Sweden

- Aaron Lerner MD, MHAExpert in Clinical Immunology, Clinical Trials, Gastroenterology, Author, Prof. at Carmel medical Center and Medical Practice Consultant, Israel

- Marta Vives-Pi MSC, PhDHead of Immunology of Diabetes group at the Germans Trias i Pujol Research Institute in Badalona, Spain

- Alan Ebringer B.Sc, MD, FRCP, FRACPAustralian immunologist, professor at King’s College in the University of London

- Jan Willem Cohen Tervaert MD, Ph.D, Professor of Medicine and Immunology, Netherlands

- Gilles-Éric Séralini PhDProfessor of Molecular Biology, University of Caen, France

And the list goes on. If you sign up on the link provided by me in my first post you will see the list of all people who have contributed to this series. 

My sister has Lupus, quite a serious autoimmune disease, so the subject is directly relevant to my family. But even if my sister were not affected, the subject would still interest me because I think it is relevant to all of us. I much rather keep an open mind and listen to what some of these experts have to say, than sit in my armchair and discredit all of these experts who clearly know more than me. Who knows I may learn something. It doesn't mean that I will accept everything as gospel that is being said but the more I know about the subject the better. After that, we all have to follow our instincts and weigh up what we want to take on board or not.

I put this post up in the hope that some people may find it interesting and helpful. I am not here to convert anyone to anything. I am just a curious guy who is interested in alternative views in medicine and things in general. What you guys do with the information presented or choose not to do is up to each and every one really. No hard feelings, if you think it's all rubbish. As I said that is your prerogative. After all, it's a free world we live in. 

Must go now, off to watch the first episode....

All the best

tp

Totemphile

You've bothered to write a detailed reply so I owe you the same courtesy despite my intentions to leave this alone. I was very grumpy and unwell yesterday. I will try to be more measured.

Like I said, enjoy the series but have an open mind, include in your reading not just the links that the people selling this story are giving to you. I ask nothing more than that. It is hardly surprising that the links they offer are supportive-although you may find there is a difference between supportive science papers and actual clinical testing. A world of difference. In my experience of these weblinks (and I've looked at lots in the past) they all reference each other and contain no rigorous clinical testing. I may be wrong this time but this has been my experience. If this approach works show me reproducible, randomised, independent trials. No drug gets licensed without-although food stuffs/probiotics etc do not have to pass this test.

I don't need reminding about the risks and failings of modern medicine, I've been working for a while and my wife was an oncologist. She's also had recurrent malignant disease herself. She's faced those decisions for her patients and herself. Her treatments will have killed a few, and helped a few. hopefully more on one side of the equation.

I spend lots of time talking to patients about the failings and risks of 'my' medicine. I also have discussions about alternative views; my patients not infrequently ask me to look into these things. LGS, candida hypersensitivity, dental amalgam, radiomagnetic hypersensitivity, multiple food allergy syndrome, morgellons, homeopathy, reflexology. Alternative views and modalities that challenge conventional thinking.

My cynicism is partly from experience, and also the juxtaposition of commercial interests selling a product. These alternative views pretend that modern medicine is the vested interest when they are direct selling you a product-which I find a bit rich. When promoting anything as a panacea (the first video suggests this) for such a wide range of frankly unrelated conditions it does stretch my credulity. I won't pretend otherwise. The addition of conspiracy theories 'the Stuff Doctors Are Not telling You' adds to that feeling.

Human health does not have magic bullets in my experience. If only-I would be extremely happy to be proved wrong. As I mentioned I have no vested interest other than protecting my patients from harm when exploring alternative medicines. Financial harms, the harms of false hope, direct harms of unlicensed and unregulated treatments to name just a few. 'My' medicine has risks; explicitly presented, calculated and measured.  It obviously does not have all the answers, indeed sometimes it has none. That is an honest approach in my view. It clearly leaves space for other ways of looking at things and maybe treatments but they must match up to the same scientific rigour in my view, and also have the same balanced information about effects and risks. That rarely comes from somebody who is selling it to you.

I genuinely hope you find the videos engaging. Something, somewhere helps someone, sometimes so who knows. this cynic will wait for the whole of medicine to be turned on its head-and then I can retire!

Best Wishes

Bruce

Alternative medicine that has been proven to work is simply called medicine. I'm with Bruce. Nothing I'd like more than for the people promoting the series and products it is selling to be right. But history leads me to be cynical in the extreme.