This Is MS Multiple Sclerosis Knowledge & Support Community

@Leonard, Scott1 et. al.

Have you considered completing a uBiome test? It looks as though they have a deal on one of their tests now (in conjunction with Black Friday presumably)

http://ubiome.com/#how-it-works

I wonder if we can gleen anything from test results? Perhaps we could get access to raw data?

PN

Hi,

Leo,

It is all a muddle in a puddle. I'm not sure we will get a definitive answer any time soon. If our problem is metabolic then we need to start at enzyme activity. That means -
1) PH as a change in PH can change the shape of an enzyme and affect it's ability to combine with a substrate. A failure will lead to metabolic decline.
2)Temperature as some readings can denature enzymes
3)Infection as that can denature enzyemes
4)The concentration of enzymes and whether they are the right ones as that changes over time
5)substrate concentration as once all the substrate or enzyme is used you reach the point where reactions taper off
6)Inhibition as enzymes compete with each other.

All these variables mean results are inconclusive and often contradictory. The rate of reaction depends on so many different factors.

Waiting for an answer is waiting for Godot.
I do think you have a few options to try.
PN,
The points on the enzymes are all influenced by the bacteria which is so much part of us. Just another variable.
Leo found a point some time back about how EBV primes certain cells to become inflammatory which subsequently exposed to a bacterial catalyst. My own experience made me consider the composition of bacterial cell walls. Prior to my attack a year ago I had a very uncomfortable stomach and an unpredictable bowel. Just prior to my attack, all through it and for some time subsequently I took a very powerful antibiotic called Zinnat which is effective in destroying cell walls in gram positive bacteria. I took about 300 doses of it so I wasn't mucking around. It didn't stop an attack. In conjuction and subsequently I have taken a very expensive and diverse probiotic to repopulate my gut. Unfortunately I have no objective way of telling if it was wise except I now have a normal gut and I am continuing to recover.
There is no doubt in my mind the the composition of the bacteria we live with affects our health. I am also not sure that their names matter as long as we allow the ones known to be good guys to dominate hence a probiotic every day is essential.
There are a number of well known success stories but the strategies seem to vary and contradict. The aspiration is to find normal. You can't do that without testing for what is abnormal. My preference is to test for levels of amino acids and uric acid. Know where they are first. If they are outside the accepted range then wonder why.
I can go through what I do if you want but I am at a different stage and my progression is different to yours so exactly what I do may not be what you should do. e.g. Valtrex has been my lolly of choice for over 10 years. My dose would be different to yours. My approach to exercise and massage will be different as we are different people.
Regards,

You are right Scott, the erratic course of MS will result in different situations for all of us. What will work for one, may not work for the other. But I don't think that the general picture is quite as muddled as you suggest. In fact to the contrary. I think the important elements are known; it is now a matter of putting together the pieces of the puzzle.

I firmly believe the very roots of MS have been unveiled by my posting of 11 Nov above; with a key role for the (H)ERV and herpes/EBV and the microbiome. Notwithstanding, it is difficult to fully get my head around it, I still see fragments and pieces. Clearly, SNPs influence (some say structure) the microbiome with implications for epigenetics. I am sure over the next year we will gain a much more thorough understanding of the importance of SNPs near (H)ERV loci in the genome, the resulting epigenetics and viral activation. And we will gain a much better understanding of the detailed structure of the microbiome in relation to specific diseases. The uBiome test may have its use here.

I appreciate the complexity of the evolving discussion. We may have lost many patients on the way and I feel sorry for that. But I think all of you can rest assured that we are here on the verge of a massive breakthrough in health care, the biggest change in 150 years.

Leonard wrote:Thank you Scott. You're right, I need to work more on myself and do something. Because today it seems that I am just waiting for things to happen...

I am currently tossed up and down by on the one hand the desire to better understand MS and start a therapy from there (on the microbiome, a bit Wahls like) and on the other hand the ability to do something quickly with resources available today.
(... ... ... ...)
best Leo

Hi Leo,
"do something quickly with resources available today":

1. Do you know your serum ferritin value?
We have no excretory mechanism for iron (no bleeding like women for some 35+ years; probably no chronic H.pylori gastritis any more, which causes low but steady loss of blood = iron), so iron accumulates slowly with age, more quickly if you have a hemochromatosis gene (some 10% of the population; I am one of those, found out about it in 1993 and started to deplete my stored iron...).

2. MS is an all-or-none-disease. MZ twins typically are discordant: one has MS, the other has a risk of 15..17% (analysis in Sweden 2014) - and the close environment (home, family, nutrition...) plays no role.
What is left as an all-or-none-cause? Not an accident - would be known. NOT a common infection (like childhood diseases, EBV...), not one easily transmissible - MS is not transmissible, not even by blood transfusions.

Gabriel Steiner (1883-1965), a clinician at the University of Heidelberg at that time, in 1922 presented his analysis from ca. 90 MS cases: The causal infection is transmitted by ticks (hard ticks) - which is all-or-none and relatively rare (cf. 15..17% in Sweden...). Btw: the chronic B.burgdorferi / B.b infection in Southern Germany is about 17%...
A few years later he showed spirochetes / borreliae IN the MS lesions: No doubt, he found B.b decades before Willy Burgdorfer detected borreliae in ticks he had collected.

Are you aware that MS and late neuroborreliosis cannot be differentiated clinically? There is complete ?overlap of signs and symptoms.
This is a chronic CNS infection, not easily cured permanently:
http://www.ncbi.nlm.nih.gov/pubmed/11787831

But (after more than two decades of searching, and own experience) I can assure you that you can stop B.b in your brain with the standard therapy for B.b infection: 2-3 weeks of oral doxycycline, 200-300 mg per day (can be chosen dependig on weight...). Dirt cheap, very well tolerated, no serious risk. ("Essential" WHO drug because of its superior characteristics.)
This infection is ultrachronic, if not stopped, and slowly will destroy your CNS.

Neuropathologist Dr. Judith Miklossy is the world's top specialist on spirochetal CNS infections: She discovered that Alzheimer's disease is the result of a chronic CNS spirochetal infection, in most cases "oral spirochetes" / Treponemes, but in quite a few cases B.b.
If not stopped the brain shrinks, starting wie CIS, more or less slowly. (The end is dementia...)

It should be a no-brainer to get a doxy prescription and do the standard B.b infection therapy for a few bucks = "do something quickly with resources available today".
I did that in Jan./Febr. 1996, later followed by doxy "pulses" of two days each per month: About 10 g of doxycycline per year: dirt cheap. --- I am without (major) impairment / disability, and I know from my 20+ years of searching that this approach is valid, it works (admittedly limited evidence, but the minocycline study from Canada presented at the ECTRIMS conf. 2015 in Barcelona is a new important piece in the puzzle:
http://www.medscape.com/viewarticle/852565 )

I had 3x dementia in the family in the previous generation: I am VERY confident that I will not become demented.
Two older brothers have the familial iron storage disposition also: Their docs do phlebotomies - like blood donations - on them regularly, for more than 15 years by now. My oldest brother soon will be 77, and he is "top fit". (An uncle was 96 and was quite fit up to 90+: that is what I expect to duplicate, at least...)
Best wishes to you,
chenman

(Doxycycline is a ?century drug: really impressive what keeps coming up from ongoing research, i.e.
http://www.ncbi.nlm.nih.gov/pubmed/24926631
All this is to be considered in addition to the anti-microbial activity.)

Hi Leo,

I don't think and I disagree on very much at all. Most of what I have found helps has been by trial and error. If we do differ then it has been about my choice of treatment options. You do excellent work on the theory but at some stage you have to dive in to the pool.
Without promoting any one idea above another it is still wise to be evidence based. I'm sure you have done the tests for infections. You do need to treat the ones you know you have. I'm sure you have looked at your standard measures of health. You need to respond to the numbers that are awry. You know all this.
What does worry me is your conclusion that you are in a secondary phase. I have never been a fan of those arbitrary definitions. It almost lures you into putting boundaries around your expectations. There are clearly people who have pronounced damage. I am very sorry for them but you don't have to become one. The key part of MS is the word multiple. It is a battle to recover but it is one thing at a time. There is no magic bullet.
A year ago, I stopped two chambers of my heart and lost the capacity to walk. The advice was fatalistic and unhelpful. There was an endless number of people pushing pain killers and other palliatives at me. I resisted and made my own decisions. Now I only hear people say how well I look. It's obvious to me, but not to them, I did some damage but I don't let that stand in the way.
You need to treat each infection as an enemy and attack it. You need to address metabolic issues the same way. You definitely need to exercise those muscles. Exercise is not about running marathons. It's about isolating muscles, particularly small ones, and using them.
I will help if you wish but I do really think you need to do something.
Regards,

Yes Scott, besides working on the theory, I have started to work more on myself. Mainly through intense physiotherapy. Twice a week I do exercises with the therapist, the other days I do stretching exercises by myself and walk for a kilometer, every day again. During walks when muscles are warmed up and after a stretching of SOA and related groups, my gait goes almost as normal for a 100 meters or so, as in the old days, like a well oiled machine. Whow, even my wife spotted it. The right leg that I normally drag along goes up up better. Amazing what a bit of stretching can do…

Still, as I have just started with intense exercise, the muscles and tendons feel stiff, a bit like they used to feel after some heavy training 20 years ago. But we expect that things will get better in a few weeks time. Before, I did some physiotherapy and despite the recommendation from my neurologist, it was limited to at most once per week, probably closer to once per month. That is not good enough and is not useful. As you can find on the Internet, you need to go at least twice per week, and then –is said- it will be worth the investment… We are inspired by the work of Peter Feys https://www.uhasselt.be/UH/biomed/Princ ... -Feys.html

My right leg is weaker than my left leg. What I find most interesting is that if I apply NMES (Neuro Muscular Electric Stimulation), the response of right leg is lower as well. Clearly, it is less sensitive to NMES stimulation and to get the same response, I need to give the muscles almost twice as much stimulus. Now I don’t think that the signal travels through the spinal column and brains, but it will travel directly to the muscles. For me this suggest that the muscles in the right leg are less sensitive, and it will be just like that also for signals received from the spinal column. In my view, this demonstrates that part of our problem is in the muscles. Where apparently novel insights suggest that NMES can be used as an effective therapy, against VZV and possibly herpes. And may be here lies an explanation – at least in part - for the recovery of Terry Wahls. She used NMES extensively.

Besides that, I also take vitamin D 25,000 IE each week now and a spoon of cod liver oil each day (the vitamin D connection and blocking of EBNA), 2 x 500 mg Metformin (against oxidative LDL, works a bit like Simvastatin, there was a good article recently in The Lancet about slowing progression and brain atrophy) and I take that together with 1 mg Glimpiride (works in synergy with Metformin in the gut). I am thinking about Methotrexate which according to a study in the 90’s slows down progression significantly (we know it works on the mitochondria and adenosine, the study can be found on this thread a few pages back, the study was done by very reliable researchers), you can take it as pills. If administered at low dose, it has hardly any side effects.

And then, if things do not stabilize and the theory will not result in the not-to-distant future in a new effective therapy through manipulation of the microbiome, I will take either Rituximab (intravenous and intrathecal, costs me a lot of money as the insurance will not pay) or Endoxan/Cyclofosfamide (works a bit the same way, it also interferes with the B cells but as the particles are much smaller than the monoclonal antibodies in Rituximab, it penetrates the spinal column so one can do without the intrathecal; as well my insurance will probably pay).

And as I said, there is this hope deep inside that at 60 things will start to stabilize as the B cell problem extinguishes. The fact that after 60 there are no new cases of MS reported is a sign of that.

Thanks for your comments. Let’s stay in touch.

Regards, Leo

Hi Leo,

Yes we should.

I found a couple of good massage people in my local shopping centre. I concluded that all the academic qualifications could not compare with a good pair of hands and kind hearts. Genuine Thai style massage is the yoga of massage. They stretch the muscles and get right to the deep skeletal muscles. They are the ones that stiffen us and hurt to work on (a lot!) A massage one day and Pilates the next works for me.
For walking in particular, you need to stretch and strengthen the psoas not just the legs. My legs were stiff after my last attack but Botox helped.
I also use a very small dose (5mg) of Baclofen before bed as it is a potassium channel blocker. It slows the entry of sodium into the cell as the potassium can't flow out as readily. As a consequence the sodium can't trigger calcium to bind the muscle fibres together. The doctors want a bigger dose but 5mg is enough and sometimes 10 mg but no more. It can make you drowsy so take it as you go to sleep.
You mentioned you get tired. Do you know how your uric acid sits against the healthy range?
There is no argument from me about EBV and the B cell. I just used Valtrex but it was for a long time.

Regards,

In the previous postings, we have seen how the gut microbiome is structured and in turn influences the phenotype of cells and autoimmunity.
The thinking is very much ahead of the articles below as it uncovers the very underlying mechanisms.

The important thing for us now is that it may be possible that probiotics can be used to restore the normal gut microbiome composition.
And that a mixture of probiotic strains could calm down inflammation and reverse the clinical and histological signs of disease.
The articles below refer.

The main question that remains: can our disease be controlled and reversed by diet and probiotics?
That would really be sensational but at this stage but it can not be excluded anymore...


http://probioticslife.com/multiple-scle ... robiotics/
Multiple sclerosis and Probiotics: Correlation found between human gut bacteria composition and MS

http://www.caltech.edu/news/bugs-brains ... rosis-1633
Of Bugs & Brains: Caltech Researchers Discover that Gut Bacteria Affect Multiple Sclerosis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3539293/
Probiotics may restore the composition of the gut microbiome and introduce beneficial functions to gut microbial communities, resulting in amelioration or prevention of gut inflammation and other intestinal or systemic disease phenotypes.

http://www.internationalprobiotics.org/ ... robiotics/
None of the strains alone were helpful, but a mixture of the three lactobacilli strains suppressed the progression and reversed the clinical and histological (tissue) signs of disease in mice.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4159266/
... was attenuated in VSL#3-treated aged rats and this was accompanied by a modest decrease in markers of microglial activation and an increase in expression of BDNF and synapsin. The data support the notion that intestinal microbiota can be manipulated to positively impact on neuronal function.

http://articles.mercola.com/sites/artic ... ealth.aspx
New Link Shows Gut Bacteria Plays Role in Multiple Sclerosis

Interesting patent trends and a direct confimation of the Terry Wahls diet

http://www.patentdocs.org/2015/08/guest ... rends.html
The Emergent Microbiome: A Revolution for the Life Sciences – Part II, 2015 Patent Trends Patent No. 9,005,603 describes treatments for autoimmune disease.

http://patft.uspto.gov/netacgi/nph-Pars ... /9,005,603
This document relates to Prevotella histicola preparations and the use of Prevotella histicola preparations to treat autoimmune conditions (e.g., arthritis and multiple sclerosis).

https://en.wikipedia.org/wiki/Prevotella
In a study of gut bacteria of children in Burkina Faso (in Africa), Prevotella made up 53% of the gut bacteria, but were absent in age-matched European children.[3] Studies also indicate that long-term diet is strongly associated with the gut microbiome composition—those who eat plenty of protein and animal fats typical of Western diet have predominantly Bacteroides bacteria, while for those who consume more carbohydrates, especially fibre, the Prevotella species dominate.[4]

I think VZV (Zoster) is the cause of microbleedings, the endothelial inflammation, the white matter lesions etc. A bit of googling provides some very interesting papers on VZV and evasion of immunity and on VZV and MS. The underlying mechanism is complicated. It causes the inflammation in RR. Immunologists know that VZV is an inflammatory virus.

Immunologists also know that EBV is an onco virus. I think the unbridled diffusion of EBV infected and immortalised B cells (our problem that causes the oxidative stress in the progressive phase) is a natural and healthy reaction of the immune system to prevent neoplasia/cancer. This article is gold: http://www.ncbi.nlm.nih.gov/books/NBK6235/ see the section on Herpesvirus—ERV Interaction: Does EBV Use a HERV for Stimulation of B Cell Growth? The people who wrote this have an open mind and are willing to look outside the box.

The implication is that the current experiments in the Progressive MS Alliance and others to deplete the B cells by Rituximab (Ocrelizumab will be positioned as the future medication) is not without risk. I think that we all should look at Cyclophosphamide (Endoxan) as a potential chemo drug to deplete the B cells. What is crucial here is the working mechanism by which B cells decrease. I think that Cyclophosphamide attacks the EBV/viral component and then the B cells wane, while Rituximab may work more direct on the B cells and not the virus. Furthermore, Cyclophosphamide are very samll particles, much smaller than the monoclonal antibodies, so one can do without the intrathecal injections that are required for Rituximab.

I am currently working on a new thesis. It takes into account the learnings of the pages 49, 50 and 51 and the above considerations of VZV and EBV.

I have just posted a long thesis titled MS unravelled on http://www.thisisms.com/forum/general-d ... 27300.html

The thesis provides a new view on MS. Proof-of-concept studies will now be needed to prove or disprove the many new elements of the thesis.

The thesis now finds its way in the higher echelons of the medical sector and beyond. Its credibility would however be significantly enhanced if it would be supported by medical professionals and experts from over the world, in particular the need for further proof-of-concept studies.

Therefore, if you are a medical professional or expert and you could support the need for further proof-of-concept studies along the lines of the thesis, please send me a pm. Your name will not be published on this or any other forum but it will be added to the list of eminent medical professionals supporting the need for urgent action in this field (under the section in the thesis Critical need for an open debate for solving the MS puzzle).

In May, a hackathon will be held in Amsterdam, the Netherlands, to hack MS.
http://www.mshackathon.nl/

The hackathon is an novel innovative initiative of the VUmc, the main medical centre on MS in the Netherlands, and other partners.
The VU is declared free from church, state and commercial interest: http://www.vu.nl/en/about-vu-amsterdam/ ... index.aspx

In 36 hours, participants including doctors, researchers, engineers and consultants will be cleaned in a "washing machine" of all old and engrained ideas.

It looks like an ideal setting to discuss and test my progressive ideas.
I have contributed my thesis which has been much welcomed. see also http://www.thisisms.com/forum/general-d ... 27300.html

Let's hope this will have an impact and help change the landscape!
Great initiative!

http://www.hcplive.com/conference-cover ... -sclerosis

This article confirms the view that RR MS and progressive MS are caused by two different underlying mechanisms, as explained by my thesis on http://www.thisisms.com/forum/general-d ... 27300.html

You should see the thesis as a blueprint for a new understanding of MS.

Hi Scott,

With your knowledge on NOS, would you think that Tamsolusin, a drug for benign prostatic hyperplasia to relieve symptoms of urinary obstruction, is good for patients with MS? Or should they stay far from the drug because there is a relationship with NO in smooth muscles but possibly also in other parts of the body?

I am using the drug since the late last year and it really helps me urinate (I am getting 60 years old soon) but my gut feeling tells me that for MS patients with a high B-cell count/superoxide this is not the right thing to do...

Regards,
Leo

Hello Leonard,

Leonard wrote:I am progressive. Slowly, my gait goes worse, my legs go more difficult, climbing the stairs becomes more of a challenge. If I walk for a short while, making the next step becomes ever more difficult. But then, I stand still for some time, seconds or minutes. And the next steps will go remarkably easier. This was no different several years ago when I could still walk for several miles. If “flat”, I would rest a bit and things would go better again. During my holidays, if flat after a long walk, I eat some berries and grapes that I found on the way and I would go much better – almost instantaneously. Lately, also temperature and air pressure are influences that have becomer more pronounded.

Why do we see this recovery? How is the dynamics explained? It seems difficult to explain with demyelination which is a fairly static process. Myelin does not change overnight, let alone in a few minutes. As I said in an above posting, I think the real problem lies with the ion pump and more in particular the fact that the equilibrium can not be maintained. Probably because there is insufficient energy supplied to recharge.

Insufficiently functioning mitochondria disrupt the normal activity including that of the electron transport chain. And recharging the ion pump then fails or goes too slow to maintain firings. And the pump will then soon lack the ‘potential’ for new firings (up to 100,000 firings for fully charged pump).

The direction of causality is not immediately clear to me.

Above quote posted Nov 21, 2015

What you have described implies obstruction of fluids in the spine. I believe progressive MS is caused by this obstruction and is a functional, not biochemical issue. upright doc's quote March 31, 2016 summarizes it well. Flanagan “Obstruction to blood and CSF flow in the spinal canal and cranial vault may play a causative or contributory role in neurodegenerative and neurological conditions of the brain and cord."Also, Terry Wahl's Healing success is due as much to stimulation of cerebrospinal and blood fluid in the spine as the diet. I avoided steroids with my first big attack by getting a shiatsu massage (which I've only recently come to recognize.) If function returns through body movement or position, it's the freeing of fluid circulation. A study of your spine using a FONAR cine upright MRI might give you a better idea of where the obstruction lies.

Best regards, Vesta