This Is MS Multiple Sclerosis Community: Knowledge & Support

_________________
I do my own research, and find my own answers Its good to talk

Thanks a lot for the link. Very appropriate. I recognise many things.

Just on the relation to diabetes, I think they got it the wrong way around. It is not the diabetes that causes the weakened immune system, it is the immune system response to the gut micro-biota that eventually leads to diabetes.. I know, it is perhaps still a bit speculative at this point but the scientific publications confirming such cascade of events is already there (some links are given above in this thread).

Some quotations from the intellectually highly stimulating book entitled The Gathering Storm by Lee Robinson et al. The book was produced to provide clarity about the economic outlook and the financial crisis. I see many parallels....


"We find that respectable commentary and academic opinion are increasingly divorced from reality.

An … orthodoxy has been created, centred around an incredible complacent and self-satisfied view of the world.

The consequences of this delusion are becoming painfully visible …" Eric Kraus


"The fact that an opinion has been widely held is no evidence whatsoever that it is not utterly absurd; indeed, in view of the silliness of the majority of mankind, a wide-spread belief is more likely to be foolish than sensible" Bertrand Russell


"Truth is tough. It will not break, like a bubble, at a touch. Nay, you may kick it about all day, and it will be round and full at evening." Oliver Wendell Holmes, Sr

http://www.frontiersin.org/cellular_and ... 00111/full

Quote: As T cells play critical effector roles in diseases like asthma, inflammatory bowel disease, ... diabetes, and multiple sclerosis, it is of great import to unravel the cause and effect relationships between the gut microbiota and LP T cell responses in allergic and autoimmune diseases.

Thus, to paraphrase, the time is now and the place is the gut.

I think that your measurement scale may be off by a few orders of magnitude. The blood brain barrier is formed by the endothelial cell layer lining the vasculature within the brain. It is the tight junctions between the cells that maintain the integrity of the blood brain barrier. The tight junctions are made up of multiple protein complexes linking the cells together. A micron (µ) is 10^-6 m and an endothelial cell is typically around 10-20 µm in diameter. However, an angstrom (Å) is 10^-10 m and is a unit which is typically used for measuring the bond lengths between atoms. For example, a carbon-carbon single bond is around 1.5 Å in length. A large multi-protein complex, such as a tight junction, is going to be many times this distance in size.

NHE

ECTRIMS / ACTRIMS 2011 http://www.congrex.ch/ectrims2011 presents the great new insight about "auto-"immunity caused by the gut http://www.youtube.com/watch?v=ZcVatbzHUBs http://registration.akm.ch/einsicht.php ... N_ID=11599

I think that the external hygiene is not so much to do with it. Perhaps this parasite thing has some relationship to external hygiene http://ms.about.com/od/newsresearch/a/worm_soup.htm but it would seem rather far-fetched to seek the cause of MS in our "unusual sterile society". But the relationship to the gut is important...

It is the balance of the gut flora that shifts in the wrong direction, in other words it is the "hygiene" in the gut. In particular, a sugar-rich and high-fat diet provides for a poor "hygiene" in the gut.

Besides diet, one important reason why the intestinal balance shifts to the wrong side is the vitamin D, or better to say a lack of vitamin D. With age, vitamin D production by the skin becomes less, and this is what causes the balance to shift in the wrong direction. The segmented filamentous bacteria is the culprit, I am sure we will hear much more of it.

This article on how the immune system is "formed" and the role of the gut is also interesting: http://www.nature.com/cmi/journal/v8/n2 ... 1067a.html

ECTRIMS / ACTRIMS 2011 gathers more than 7.000 neurologist, radiologists and MS researchers from all over the world. The question one might ask is: does someone still have the oversight? Or has this huge system lost all Archemedian points from which to exert leverage so much needed for change? e.g. to focus on ccsvi and the gut..

We must make sure that this system or medical community (which -just like we do on this forum- speculates a lot about almost everything and where a research culture dominates that has grown over the last 50 years ...), that they remain focused on obtaining a thorough and internally consistent understanding of what MS. There lies the key to the solution and any future therapies. I am sure you will all join in helping me to make sure they stay on track..

my own GP thinks so as well.
we then count to 2016 - 2018 before the breakthrough takes effect.

but I think not.
we live now in "Internet" time.
developments go much faster than before.
also forums such as these make an important difference.

whether you agree with this thread or not is not so important.
important that the ghost is out of the bottle
and a major decentralised force is gaining strength, every day, every hour, all over the world.

the new media, the enormous amount of information available and the search engines have forever changed the landscape.
these new channels are now becoming "mainstream", including for the professional field of health care.
and the old channels and central authority will lose influence, their monopoly on information will dissolve.

it is now important that these big developments are properly guided where necessary, for the good of us all.
so that processes accelerate and the 2016 - 2018 horizon comes much closer...
I see an important role for Government with the big G to make sure the 'system' does not stagnate and to offer fixed Archemidian points from which to exert leverage, if and where needed to change.

MS Made Simple

It has recently been denied from de side of neurologists that CCSVI is the cause for MS. I think that the remarks made were very tendentious, actually they are very polemic.

I gave my views on this on a Dutch webforum on MS. As this may be of interest to you as well, I copy it here.

MS is strictly speaking caused by a faulty immune system that reacts to problems in the intestine (faulty brain-bowel connection). This makes that bad T-cells start to proliferate through our bloodstream.

That is so for many people, for example for people with diabetes or rheumatic disorders. But why don't they get MS and we do?

Why can these T-cells do their destructive work in our brains and spinal column? Of course, because our blood brain barrier (BBB) ​​is compromised.

And why then is our BBB compromised? Because the blood has battered on the vessel walls of the draining veins for many years, about 60 to 70 times per minute. And I think especially at night when the IJV (internal jugular veins) must do their work. And of course, because cells were poorly nourished due to a low blood flow with low glucose/oxygen content towards the exit of our brain.

And why has the blood battered on our vessel walls all these years and was the cell nutrition bad? Well, here is the link with CCSVI. While the channels for the drainage were blocked or partly blocked, the blood could not get out properly and got jammed in our brain. And that blockage is what is called CCSVI.

Neurologists believe that CCSVI is a strange term. This shows the problem. It is a medical discipline that they have not mastered. MS is a disease that goes beyond the boundaries of different medical disciplines. A vascular surgeon knows very well what is CVI, CCSVI is nothing more than CVI for the Cerebro Spinal.

So, strictly speaking neurologists may be right that MS is not caused by CCSVI. But that is not very honest, that is not the full story. In fact many years of CCSVI causes the BBB to break and which makes you vulnerable to attack by T-cells e.g. from the gut with MS as a result.

A related question then is: what if our kids would turn out to have CCSVI. But no symptoms of MS. Is it dangerous for them to have CCSVI? Because the BBB could get under stress? With the risk that it finally breaks. After which T-cells (which are triggered in the intestine) can do their destructive work. After which they would develop MS.

We can certainly benefit from CCSVI liberation and I am sure we have not seen the last of it. But it may be our children that are the real winners of this breakthrough. If they get liberated in good time (assuming they have vascular constrictions in theor neck veins) they will never develop MS .. whaw

yes, yes, believe it or not, but I think I found the explanation of RR and progressive MS.
See the text in red.

CCSVI is congenital, the genetic factor in MS is known http://www.areco.org/ms.pdf As regards the causal relationship, Zamboni found that > 90% of young people he diagnosed with vascular problems in the neck had developed MS 20 years later on. In exceptional circumstances, the narrowings could be caused by bacteria that seem to 'know' the trick..

After many years of CCSVI the vessel walls will get weak or damaged. The tissue of the BBB is compromised and becomes permeable. And virusses (e.g. Bar-Eppstein), and bacteria (e.g. Chlamydiales family) can get to your brain cells.

A high vitamin D during pregnancy and childhood can provide a little better protection through better cellular nutrition and thus stronger vessel walls and brain cells. Vitamin D also seems to give some calming effect on the immune system. (I think that the Vitamin D causes cells in general to be better nourished. Various regulatory pathways of the immune system designed to correct for a poor nutritional situation then just do not activate. Vitamin D thus does not actually suppress the immune system -the current concept- but regulatory pathways simply rest because there is no need to adjust anything).

The many years of CCSVI will besides a damaged BBB leave deposits in the veins. Associated with lower blood flow at the draining side this makes for a poor cellular nutrition with glucose. A genetic predisposition to diabetes can play here its role and lead to faster deterioration because cells are less responsive to insulin / less active gates for glucose absorption. http://www.healingmatters.com/diabetes.htm This explains the prevalence of diabetes in MS.

If and when the BBB becomes permeable, the weakened cells behind the BBB become susceptible to infection by virusses and bacteria that find a warm and fertile ground and perhaps even find some protection behind a partly breached BBB (MS is venocentric; the weakening of cells is evidenced by the fact that the ion pump is not sufficiently charged to maintain its equilibrium).

And also T-cells can then penetrate the brains. These T-cells can be induced by many things, e.g. by the immune system that is trying to tackle the culture of virusses and bacteria. Another possibility would be a hepatitis vaccination. Or the old theory of an immune system that is disturbed by food allergies (the faulty brain-bowel connection, see next paragraph). Bacteria may lie dormant for a long time and break out only every so many years causing a relapse remitting pattern http://www.mscare.org/cmsc/images/pdf/MSE_Nov_03.pdf I think this is mainly related to early onset MS.

Another possibility is that the gut activates the immune system. Autonomous bacteria in the gut can give a strong immune response. Here in particular the group of segmented filamentous bacteria are suspect. The second peak in the graph of MS onset occurs because at mid-age the production of vitamin D by the skin decreases. This makes the gut balance shift in the wrong direction with more bad bacteria growing in the gut; where -induced by the gut- an increase is seen in the amount of bad T-cells that then proliferate through the bloodstream (the faulty brain-bowel connection). The pattern then will be more progressive.

The gut flora is adversely affected by our diet. Our "modern" sugar-rich Western diet is not good, (1 time per year) fasting is good, a Swank (low fat / low sugar) diet is good too. Here Vitamin D plays a role. Vitamin D helps to maintain a healthy balance in the gut.

When the immune system then is triggered -for whatever reason- and T-cells proliferate through the bloodstream, in those places where the tissue of the BBB is damaged they do their destructive work. For us, that is in our brains causing the damaging effects that we know best. Besides neurological damage in de CerebroSpional, people with an unhealthy intestinal flora may develop a diabetes related peripheral neuropathy aggravating the neurological symptoms.

I suggest we start a discussion with a focus on cellular nutrition, that is vitamin D, blood sugar fluctuations and insulin fluctuations and damage that can cause, the GLUTs and the enormous temperature sensitivity, Metformin, LDN, the liver and what a new liver can do, triglycerine and cholesterol levels, sugar intake, parallels diabetes - MS, etc.

I have seen signs of weakness with my dad that I suffer from now, 25 years ago. More or less simultaneously, he got diagnosed with type 2 diabetes. He takes little or no sugar anymore (my mother tells me his sugar intake was very high just before his diagnosis) and not too much fat, and his pills (Metformin and Glimperid).

We are now 25 years later, he is 84 years old and in excellent health. The weaknesses seems to have gone, vanished unnoticed. A discussion here on TIMS in the autumn of 2010 (with Lyndacarol) has also been the start of this thread. So I know it can be done and I have confirmation from a number of professors from different countries, independent for each other, that it conceptually is correct or at least as plausible as the autoimmune hypothesis ...

Last autumn, my dad had - after a period of severe stress - three attacks of what looks like Meniere. What is that? An autoimmune response behind the ear. When I heard that, this rang the bell for me: nothing autoimmune, but stenoses in the draining veins behind the ear. But he is just fine now

In Dutch, the saying goes "The apple never falls far from the tree". Well, I think that true here as well. I have discussed the matter with endocrinologists and diabetologists, but I'm (still) not diabetic and my hormones are ok. So they say there is nothing they can do for me, I guess they follow the protocols... But I have MS and I think in my case (after the necks veins were opened) the pre-diabetic condition (read the bad T cells from the intestine) is playing tricks on me, and causes a further deterioration..

A related phenomenon that I can not explain is the temperature effect. When it is hot in the summer and I'm at the pool, then I do not walk as good ... But if I take a deep dive in the cold pool and stay in there for a while, then I walk again like a well-oiled machine. Why is that? I think that it is caused by the temperature effect of the GLUTs (an effect that is well known). And that if there is one thing that we must do, it is to ensure that our GLUTs (which are the gates for glucose transport into the cells) stay in a good condition. Where high fluctuations of the glucose level and insulin are devastating... (Lyndacarol, if you still read here: recognise this?). Metformin may help to stabilise the bloodsugar and improve the absorption of glucose by the cells. And I understand that it has no "memory effect" so you can continue to take it.

In the medical world, I run into the big brick wall. Thus, there is need and opportunity here to further explore the links between MS, diabetes, Vitamine D and cellular nutrition..

I agree with you:and insulin levels!

http://www.thelancet.com/journals/lance ... 1/fulltext

Applying what we know already will have a bigger impact on health and disease than any drug or technology likely to be introduced in the next decade.

http://www.congrex.ch/fileadmin/files/2 ... harcot.pdf

This information is very important for all of us. The second page elaborates on the role of gut commensal microorganisms setting off a cascade of events causing MS.

This book is an absolute must-read for anyone who works in this area or is interested in this discussion. It is beautifully worded, with great insight, very rich..

http://www.amazon.com/Turning-World-Ups ... 389&sr=1-1

I quote: The power of the system presents a significant problem. Firstly, so many institutions and so many people from health professionals, science, commerce and government have so much invested in the current system, and therefore have so much to loose by change. Secondly, the public, politicians and patients are almost all conditioned by history to think about health and health care in particular ways. ... The very things that helped us make such excellent progress in the twentieth century have, paradoxically, now become a major part of the problem. unquote

The challenge is to graduate the system. For the sake of the hundreds of thousands of patients, this should be done expeditiously.