This Is MS Multiple Sclerosis Knowledge & Support Community

Thank you Vesta.

I think the knowledge on your site http://www.mscureenigmas.net/ nicely complements the knowledge in the book of Terry Wahls Minding My Mitochiondria and the knowledge that emerges from this thread. And under the heading Paleo-Macro-Diet, you put the Wahls diet in a good context as I have never seen before - the 4 steps, very useful. I am sure this goes towards setting out the broad lines of a recovery programme. Well done!!

Although I am not necessarily a big fan of all sort of wishy washy alternative medicine approaches, I do believe that with the new insights in MS, the streams of conventional medicine, functional medicine, millenia old Chinese/Oriental medicine and alternative health care will come to flow together (see for instance http://www.amazon.com/The-Live-Food-Fac ... ood+factor ) And the world will need to transcend quite a few dogma's and false barriers there.

Hello Leonard: Thanks for the positive feedback. I'll look forward to following your healing journey.

In the other topic on this forum on "Bacterial toxin a potential trigger for multiple sclerosis" on http://www.thisisms.com/forum/general-d ... 24167.html
we find this article on the possible role of the Epsilon toxin in MS:
http://www.ms-uk.org/bacteria

It is of interest to note that the article suggests that epsilon toxin does not only target brain endothelium cells and oligodendrocytes for myelin production (and their precursor cells OPCs I guess), but also quote ...that epsilon toxin targets other cells types associated with MS inflammation such as the retinal vascular and meningeal cells.
whow...

But then, this is where it really gets interesting:
quote: Originally, we only thought that epsilon toxin would target the brain endothelium cells and oligodendrocytes; we just happened to notice that it also bound to and killed meningeal cells. This was exciting because it provides a possible explanation for meningeal inflammation and subpial cortical lesions exclusively observed in MS patients, but not fully understood.

Then, when I looked for 'meningeal' on wikipedia which has been a great source of information for me all the time, I found something that is even more interesting:
http://en.wikipedia.org/wiki/Meningeal_veins#Drainage
This wiki page brings it all together: the CSF flow, the drainage of the dural nerve system, the dural sinuses, the meningeal inflammation and, guess what.... the internal jugular veins.

whow.. I believe this thinking fully confirms the concept for MS as set out on the first page of this topic.

This wiki page seems to have been common knowledge that was there all the time.
But then, I ask myself, why was this never associated with our MS condition?
Not even after so much noise was made on the social fora and in the news on the blocked internal jugular veins/ccsvi?

What is going on here?
Really, this issue is getting bigger by the day with more and more questions to be asked...

The Wahls diet rich in vegetables and fruits been associated with a high consumption of micronutritients and phytonutritients healthy for our mitochondria.
But I have been thinking that perhaps there is more to it.
Perhaps the diet rich in potassium also changes the sodium/potassium balance so critical for the proper functioning of our nerve cells.

http://www.ext.colostate.edu/pubs/foodnut/09355.html
http://people.eku.edu/ritchisong/301notes2.htm

Hi Leonard,
Given my recent calcium related neuropathy incident, I think maybe a little attention to the other pumps might be necessary to help complete your picture. A link to start you off if you're interested...
http://www.mgwater.com/laf.shtml
Glad to see you've not given up and continue to be driven by curiosity.

the potassium sodium ratio, the calcium magnesium ratio, the copper zinc ratio, all these are important!

rat + epsilon toxin:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC108230/

Zinc is stored in presynaptic vesicles together with glutamate and seems to regulate neurotransmission in the glutamatergic system (12, 39). Excessive stimulation of the glutamatergic system, which accompanies depletion of zinc stores, induces neuronal death in the hippocampus (12). Thus, it seems likely that epsilon-toxin stimulates the release of glutamate from presynaptic vesicles, leading to the neuronal damage to the CA3 and CA1 subfields in the hippocampus.

Maybe this theory also explains low zinc in ms.

Jimmylegs, is the root cause of low zinc im ms clear?

Glutamate killers:
Vitamin D, curcumin, NAC, ALA
http://www.thisisms.com/forum/natural-a ... 50-15.html

@Vesta: You got me thinking. With reference to your thoughts on MSCureEnigmas.net, I think MS is not necessarily an either or, a ccsvi or stress. I think MS may be a combination of factors, with one following the other.

If I just take my own experience, stenoses in the neck veins (birth defect, for me there is clear evidence) will at some point start to affect the HPA axis and for instance the eye nerves. Over time (the course of many years), stress on the shoulder and neck will develop due to hormonal dysregulation and, added to that, stress in live (the tensed up shoulder and neck; an MS diagnosis is not exactly helpful there!). As such, the stress factor will be – at least in part – HPA induced.
http://syontix.com/the-gut-brain-axis-h ... enal-axis/

The troubled HPA axis will cause other symptoms too, such as poly urination, so typical for MS patients in the progressive stage. See also http://en.wikipedia.org/wiki/Polyuria and note the figure in the right top corner showing the HPA axis (P= pituitary; A = Adrenal). The Pituitary gland causes a short of ADH vasopressin hormone which in turn causes the polyuria.

I would not be surprised if the troubled HPA axis would also cause the leptin mechanism to be wiped out. And a lot of other things to get out of balance (e.g. zinc?). This matter needs a veterinarian look on the whole endocrine system.

Last December, my wife found this book on the myth of the Chronic Fatigue Syndrome in a local book store. The book is written by an open-minded endocrinologist, an out-of-the-box thinker. For me it was a real eye opener and puts it all in perspective, in particular the role of the HPA axis in "auto"immunity. It is just beautiful how it explains the endocrine system as a system, in simple terms. Unfortunately, for the moment, it is only available in Dutch but I am sure Google translate can help you there.
http://www.bol.com/nl/p/de-cvs-mythe/1001004011830163/

@Anonymoose: I think there is more to it than just curiosity. Patients can be extremely motivated to get control over their disease. You are right, I can not stop now that the finish line is in sight. And I should not.

hey there leonardo societally, I think the reason for low zinc is pretty clear - people don't get enough with typical food choices.
there are a whole bunch of different dietary dynamics at work, so people with vastly different habits can end up with the same nutrient problem.
how zinc shortage plays out in an individual would depend on a huge variety of other interconnected factors, not least of which would be genetics.
some of the problems that can develop result in impaired nutrient absorption. so the low zinc is exacerbated further by other interrelated causes. and so on and so on and so on. that's my thinking on it

leonard - over the years I have periodically brought up the story of the blind men and the elephant.. your thought re combinations reminded me of it. lots of synergies and feedback loops to contend with. a very complex system, the human body and its interactions with its environment.

The current MS treatment paradigm is insufficient and largely based on the wrong premise. In fact, suppressing relapses – the common medical practice - could be just the wrong thing to do as regards the long term outcome. This video is a very powerful summary of the shortfalls.

If I take the key lessons of Terry Wahls, the four steps of Vesta on MSCureEnigmas.net and the information brought together on this thread, I think a new MS treatment paradigm might look something like this:

- De-toxifying the mitochondria/cells (from medication, from food toxins, restoring the gut lining and flora - clear from toxins ELISA / TCAD test, FMT, anti-oxidants like MitoQ, supplements, fresh air in the bedroom)

- Optimally nourishing the mitochondria/cells (food diet - paleo, veggies, no sugar / flour, supplements, potassium, micro and phytonutrients, medication to support the HPA axis, enzyme protease)

- Enhance blood flow / cerebro spinal fluid circulation (neuro-muscular stimulation - balance the bladder Meridien, angioplasty ccsvi, prozac extract, lisinopril, ET-1 antagonist bosentan, links can be found on this thread)

- Progressive exercise (maintaining the delicate balance of energy consumption and stimulating blood flow vs energy conservation).

The challenges are multiple, for the system to change see e.g. http://www.thisisms.com/forum/general-d ... 24112.html , and for individual patients to implement such protocol and refine it as necessary. We need good advice there.


The sketch below of a new concept of MS was my assessment on 13 January 2014. It is based on our learnings over the last three years. The blue print for a new treatment paradigm was added on 5 February 2014.

Venous obstruction in the drainage of the cerebro-spinal (CCSVI) is a birth defect. There is a certain genetic component that may pass from one generation to the next. Live in the shadow of the heavy metal industry, even of previous generations, is thought to be a contributing factor.

Many years of CCVSI will weaken the endothelium and break the tissue of the BBB. But with the astrocytes and oligodendrocytes there is nothing intrinsically wrong – it is not a genetic deficiency of brain cells. http://www.biomedcentral.com/1741-7015/11/219

With a broken BBB, an infectious agent may cause a blocking of receptors. The Cpn bacteria and the EBV virus which agents can be dormant for many years are known for a sudden outbreak and their ability to block receptors. If this happens, the equilibrium of the ion-pump cannot be maintained because mitochondria lack energy supply, and the charging of the pump runs down. Motor functions get impaired and an acute relapse is the result. Cytokines are released, the immune system will signal that there is something wrong, an acute inflammation will arise, leukocytes will infiltrate the damaged region, removing the stimulus and repairing the tissue. This is the relapse remitting (RR) phase of MS. The time constant of the process just doesn't point to big biological changes.

In the progressive phase, a different mechanism underlies MS. This explains the double peak in the graph of age of onset. People who 'escaped' the MS diagnosis during the RR phase because they had a fairly mild version get diagnosed after mid-age when the bad gut develops.

As of mid-age (is entirely age dependent and not on previous disease activity), the 'lining' of the gut breaks. Where the normal gut will allow particles up to approximately 1,000 Daltons to pass, the "leaky gut" will allow particles of 35kDa to penetrate the intestinal wall. These large particles will be targetted by immune cells in the gut wall and form antibody antigen "immune complexes" that will then leak into the general circulation. http://en.wikipedia.org/wiki/Immune_complex The load on the liver will increase straining its ability to excrete toxins.

At this stage, CCSVI contributes again. Due to low blood flow in the cartilage of the dural sinuses and obstruction of Cerebro Spinal Fluids (dural sinuses empty in the Interal Jugular Veins), it will inflammate (the issue is the binding of immune complexes to specific cells in the cartilage just like in rheuma arthritis). Toxic substances will leak into the cerebral compartment; probably high sugar fat consumption is an issue here as well. While progressive MS will already be latently present at this point (I already had occurences with weakening of legs on long walks...), this will kick-start the MS progression because the mitochondria that are supposed to neutralise the toxins don't have the energy. The phenomenon looks a bit like RR, but the mechanism is related to that of progression. http://www.ms-uk.org/bacteria http://en.wikipedia.org/wiki/Meningeal_veins#Drainage

Eventually, over time, the mitochondria become less and less effective, more and more toxins will build up, more immune complexes will come in the general circulation and attack the vessel walls, and increasingly mitochondria and cells will die. Studies have shown that (brain-)cell loss in MS is, in fact, mediated in part by excito-toxicity, oxidative stress, and damage to mitochondria and cellular DNA. refs 326 - 331 in Minding My Mitochondria Terry Wahls

The process causes new problems for the brain tissue and will eventually start to affect the hypothalamic-pituitary-adrenal (HPA) axis and - I guess - such things as the eye nerves. In turn this will negatively impact on the hormonal / endocrine system and establish a vicious cycle between brain and gut e.g. via the cortisol loop. http://syontix.com/the-gut-brain-axis-h ... enal-axis/

The main area of leakage is the crucial small intestine. Food intolerance (e.g. gliadin) is thought to be contributing factor with WGA/lectins leaking into the circulation but also lactose is suspect. In the large intestine, the gut micro-biome may get out of balance with too much Clostridium Perfringens type B with protoxins (Epsilon -toxin) leaking into the circulation. Micro-nutritions and vitamins may be insufficiently produced and absorbed by an unbalanced intestine causing further metabolic dysregulation, growing insulin/leptin resistance and problems for mitochondrial energy supply.

White floor may inhibit absorption of micro-nutritions as phytates bind minerals and then are not absorbed anymore. Heavy fat and carb/sugar - our typical western diet - may contribute to the imbalance of the gut micro-biome. Food quality, in particular micronutritional and phytonutritional content, is believed to be an issue as well where soil depletion and hydroponic plant growth may aggravate things and help explain the current surge of autoimmune diseases. Vitamin D then is thought to be a peptide that works anti-microbial in the gut which may explain some if its beneficial effects. Probiotics also seem to have positive effects.

In this progressive stage, the affected area is thought to be much larger than just the brain, goes all the way down via the nerves to the muscle cells. Hence, MS is not only a disease where two different mechanisms underly, MS is also a disease where different areas are being affected in the different stages (from brain and spinal in RR to whole body in progressive). As such, MS - both as regards its motor control and its sensory functions - is the serial connection of long neurological pathways consisting of a part in the brain and spinal and another part in the limbs that are progressively affected. With Terry Wahls, I think that MS in the progressive stage has everything to do with mitochondrial energy failure. I started to reread her book Minding My Mitochondria and, with the knowledge acquired here over the last three years, the more I read, the more I appreciate what she has done. Her analysis fits beautifully with the picture that emerges here.

As the situation detoriates (OPC do not work properly, mitochondria lack energy supply), more cytokines are released, more T-cells are drawn in, more inflammation and oxidative stress are caused. This inflmmation will lead also to a chronic hypoperfusion , and further induce mitochondrial energy failure and cause inflammation. Neurodegeneration, oligodendrocyte apoptosis, myelin breakdown will cause progressive MS as the result. Secondary progressive MS is just the combined effect (a superposition) of RR things happening in the brain and other progressive mitochondrial failure happening along the long nervous paths from the brain cells down to the muscle cells.

The "leaky gut" is the cause of many "auto" immune diseases, including diabetes mellitus type 2 and rheuma arthritis.

Patients with MS may be affected in various ways depending on their genetic susceptibilities e.g. predisposition for diabetes type 2, predisposition for rheuma arthritis, vitamin D / sun exposure during pregnancy of the mother and during adolecence that influences cell composition e.g. number of "vit D" gates / active membranes, the vitamin D and the natural anti-biotics in the gut balancing the gut flora, environmental factors such as exposure to heavy metals (even of previous generations) and related genetic factors of veins (Boston document, Texas study), the specific pattern of vascular insufficiencies of the draining neck veins, the hormonal balances (e.g. the difference between men and women and a relationship with testosterone is a most clear indication that MS is metabolic related to cellular nutrition), a lack of zinc to bind and store insulin thereby raising peaks and reducing insulin sensititity, even a vaccination for Hepatitis may be suspect, the mind-body connection (stress, distress, prolactin) and the cortisol regulation/Adrenal fatigue, etc.

The challenge is now to recollect all knowledge and expertise that is around and build a new more advanced model of what is MS and rapidly progress this matter for our cause.

The current MS treatment paradigm is insufficient and largely based on the wrong premise. In fact, suppressing relapses – the common medical practice - could be just the wrong thing to do as regards the long term outcome. This video is a very powerful summary of the shortfalls.

If I take the key lessons of Terry Wahls, the four steps of Vesta on MSCureEnigmas.net and the information brought together on this thread, I think a new MS treatment paradigm might look something like this:

- De-toxifying the cells (from medication, from food toxins, restoring the gut lining and flora - clear from toxins ELISA / TCAD test, FMT, anti-oxidants like MitoQ, supplements, fresh air in the bedroom)

- Optimally nourishing the cells (food diet - paleo, veggies, no sugar / flour, supplements, potassium, micro and phytonutrients, medication to support the HPA axis, enzyme protease)

- Enhance blood flow / cerebro spinal fluid circulation (neuro-muscular stimulation - balance bladder meridien, angioplasty ccsvi, prozac extract, lisinopril, ET-1 antagonist bosentan, links can be found on this thread)

- Progressive exercise (maintaining the delicate balance of energy consumption and stimulating blood flow vs energy conservation).

The challenges are multiple, for the system to change, and for individual patients to implement such protocol and refine it as necessary. We need good advice there.

From the previous posting: strong, well-functioning mitochondria are essential.
Summarised in one-line: antioxidants are extremely important; I think the Wahls diet is very rich in antioxidants, the neuromuscular stimulation stimulated the cerebral blood flow.

But here is a big problem area: the phytonutrients in our food (see also earlier posting on this thread).
Low quality food and high grain consumption (binds phytonutrients) cause problems.
refs:
http://www.nutrition.gov/whats-food/ant ... onutrients
http://www.whfoods.com/genpage.php?tname=faq&dbid=42
the book Minding My Mitochondria Terry Wahls

From the previous posting: strong, well-functioning mitochondria are essential.

For us, degrading mitochondrial functioning causes MS; ccsvi plays a role because the blood flow and thus mitochondrial functioning deteriorates. For others, it causes rheuma arthritis or an other immune disease.

Bad mitochondrial functioning (in this case of B cells) also gives EBV a chance to break out.
On the critical role of EBV in PwMS:

http://www.hindawi.com/journals/jir/2013/535738/
Abstract
Systemic autoimmune diseases (SADs) are a group of connective tissue diseases with diverse, yet overlapping, symptoms and autoantibody development. The etiology behind SADs is not fully elucidated, but a number of genetic and environmental factors are known to influence the incidence of SADs. Recent findings link dysregulation of Epstein-Barr virus (EBV) with SAD development. EBV causes a persistent infection with a tight latency programme in memory B-cells, which enables evasion of the immune defence. A number of immune escape mechanisms and immune-modulating proteins have been described for EBV. These immune modulating functions make EBV a good candidate for initiation of autoimmune diseases and exacerbation of disease progression. This review focuses on systemic lupus erythematosus (SLE), rheumatoid arthritis (RA), and Sjögren’s syndrome (SS) and sum up the existing data linking EBV with these diseases including elevated titres of EBV antibodies, reduced T-cell defence against EBV, and elevated EBV viral load. Together, these data suggest that uncontrolled EBV infection can develop diverse autoreactivities in genetic susceptible individuals with different manifestations depending on the genetic background and the site of reactivation.

http://www.sott.net/article/265069-The- ... n-Overview
Members of the herpes virus family (i.e. cytomegalovirus and Epstein-Barr virus which most people have as latent infections!), can go after our mitochondrial DNA, causing neurodegenerative diseases by mitochondrial dysfunction. But a ketogenic diet is the one thing that would help stabilize mtDNA since mitochondria runs the best on fat fuel. As it happens, Alzheimer's disease is the one condition where a ketogenic diet has its most potential healing effect.[4]

The role of mitochondrial dysfunction in our "modern" age maladies is a staggering one. Optimal energetic sources are essential if we are to heal from chronic ailments. It is our mitochondria which lies at the interface between the fuel from foods that come from our environment and our bodies' energy demands.

http://www.ijmm.org/article.asp?issn=02 ... =Kannangai

http://www.health-matrix.net/2011/05/11 ... onnection/

http://www.karenhurd.com/pages/healthto ... virus.html
So once the Epstein-Barr virus invades, you always carry it. At some time in the future, the EB virus may see that your defenses are lowered and take advantage of the situation and strike out again.

Some say that a weakened immune system is the cause of reactivation. This is a safe statement—because we know that a weakened immune system is the cause of many initial infections as well as reactivations. We also know that those with acquired immunodeficiency (i.e. those who are taking anti-rejection drugs after kidney transplants) or those that are born with an immune system that is deficient (congenital immunodeficiency) have problems with EBV


where a Google search on EBV, immune complexes and cellular health/nutrition reveals many more relevant articles.

see also
http://www.thisisms.com/forum/general-d ... 24216.html
http://www.thisisms.com/forum/general-d ... 23331.html

I think with this knowledge we are not too far from getting our head around the whole picture.

My bowel has just been checked for leaky gut, I do not have a leaky gut!
Most markers in the green, few slightly up in the orange, nothing in the red of those typical for leaky gut.
I 'm already half a year gluten free, that may have contributed.
A few years ago, I was tested already for gluten intolerance by blood test; it brought nothing to light, but then such a blood test is not very reliable.
Altogether, I think my gut is not the main problem.

Despite gluten free, I 'm sliding backward.
But I still eat twice a day gluten-free bread and I think that is wrong.
It makes a wrong balance between the intake of phytonutrients / antioxidants that are necessary for the development of good healthy B cells and endothelial cells on the one side and, one the other side, phytates from flour which bind with phytonutrients / antioxidants from the other food and then are not absorbed anymore in the gut.
I need to go to 9 servings of veggies per day to supply the necessary nutritions; and cut the flour / starch / a-cellular carb.

The recent test also revealed that I have a very high viral load of EBV (antibodies). This makes my MS!
I am also 'eating' my own muscles.
Some of the immuno indicators IgG etc are out of balance.
The hope is now through a targeted program of cellular nutrition and trough some medication to support the HPA axis that a healthier mitochondrial functioning will help reduce the EBV viral load and immune complexes associated disease.

I think progressive MS starts with ccsvi, then inflammation of the cartilage of the sinuses by EBV (as in rheuma arthritis but then for the sinuses, poorly functioning B-cells do not suppress the virus enough in particular in the Spring when the immune system is lowest, the food and phytonutrients / antioxidants certainly play a role in proper mitochondrial function of e.g. newly created B - cells and endothelial cells, too much flour binds phytonutrients that are then secreted without being absorbed, see here the risk of too much bread), at some point the HPA axis is hit, the metabolic system is dysregulated/declining, cellular nutrition worsens, also the gut lining gets worse, more immune complexes start to circulate, and the MS deteriorates even further (establishing a vicious circle)...

with reference to http://www.thisisms.com/forum/general-d ... 23331.html :

I think for progressive MS, the issue is not suppressing the B-cells but rather strengthening newly created B-cells in order that EBV is pushed back into its shelter. See for example
http://www.hindawi.com/journals/jir/2013/535738/
http://en.wikipedia.org/wiki/B_cells#cite_note-3
Also strengtening of endothelial cells may be an issue.

I explain the success of the Wahls diet as a better nutrition (phytonutritients/antioxidants) of newly created B cells (with stronger mitochondria) and thus better functioning of these cells to get EBV pushed down. Just like the immune/B system did in the 14th century with the pest pandemic where people with a rich varied diet had much better chance of survival than those who had a very one-sided grain based diet. In this same respect, in a recent Dutch radio program, there was some talk about the "grainisation" of society and its possible consequences.

completing the vicious circle

Besides the HPA axis which works down from the hypothalamus to the bowel, the vagus nerve is the reverse side of the system.

http://www.health-matrix.net/2013/08/06 ... gus-nerve/

And as the article says, the nerve can be infected with EBV.
Some of the temporary revival after ccsvi liberation due to better perfusion may find an explanation here.

I think here is the key. Quote from the article:

This herpes virus varicella-zoster is a very problematic virus that contributes to mitochondrial dysfunction even in its latent infection phase. As I explained in On Viral “Junk” DNA, a DNA Enhancing Ketogenic Diet, and Cometary Kicks , most, if not all of your “junk” DNA has viral-like properties and if a pathogenic virus takes hold of our DNA or RNA, it could lead to disease or cancer.
...
If the vagus nerve is unable to calm down inflammation due to malfunction and/or infection within its sensory pathways, we are set up for trouble.

Strong mitochondria/DNA is important for well functioning newly created B cells.
One can't get the EBV out of the cells, infection is normal for 95 % of people, but it should get back in and stay there.
Besides the EBV/immune cells, also the endothelial cells may be an issue.

I think the total picture gets pretty clear, of both early RR, and later progressive MS, with a central role for EBV and an inadequate handling of the virus by the immune system. The picture that emerges certainly matches my own life-time experiences as an MS patient.