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Interesting, especially considering many of the treatment protocols he advises are supplements commonly taken by MS sufferers to help. But that is a concern for me... did he develop the science and recommend supplements, or did he look at the popular supplements and manufacture the science to support. I do like that he states he is a PhD and not an MD and therefore says his theory should not be taken as medical advice. Maybe its because he looks like a tele-evangelist that makes me not trust him...

http://www.prohealth.com/library/showar ... ibid=17947

I am currently taken about half of the supplements on his list.

thank you for the link.

as regards supplements, I am less convinced.
Terry Wahls writes this: "I attribute more rapid improvements to food as opposed to supplements.” and “These days I am a changed person. I talk about food, micronutrients, disease and health all the time now. I tell everyone, my family and my patients that the presence or lack of micronutrients is one of the most important drivers of either returning us to health or driving further progression of chronic disease."

and perhaps this may help to convince you: http://www.mold-survivor.com/cfs2.html
see points 7 and 9, MS patients will recognise the connection with unsaturated fats and the ratio men/women.

in reality, CFS but also MS will be generated by more complex mechanisms than only the increased nitric oxide / peroxinitrite but the majority of symptoms can be explained by these mechanisms.
I tend to see the intake of supplements a bit in the same way: the benefits of healthy food for our body will be generated by more complex mechanisms than only increased anti-oxidants / flavonoids / phytonutrients etc. These latter concepts are simplifications, the key holes through which we see the problem, that help us understand. They can help explain most of the symptoms we see but what happens in reality in the complexity of our micro-cosmos may be a lot more, and is perhaps not fully understood and can not be fully understood by these, by definition, limited concepts. That is why Terry Wahls can say "I attribute more rapid improvements to food as opposed to supplements.”

remains the big question why many of these immune diseases have not been classified according to their biggest common denominator, that is the mitochondrial / immune dysfunction, all of them seen with the same gender bias?
and why subtle changes such as for instance those caused by vascular insufficiency / CCSVI could give rise to completely different disease patterns?

quote from the article: A common etiology (cause) for CFS with MCS, PTSD and FM has been suggested by others (discussed in refs 4,9). A common causal mechanism for these four conditions is suggested not only by the association among these different conditions (many people are afflicted by more than one) but also by the overlapping symptoms typically found in these four conditions (see refs. 4 and 9 for discussion). These overlaps raise the question about whether MCS, FM and PTSD may be caused by excessive nitric oxide and peroxynitrite. Each of these four conditions is reported to be often preceded by and possibly induced by exposure to a relatively short-term stress that can induce excessive nitric oxide synthesis.

to which list I would now add MS....

In a recent Dutch article, I find this text: Numerous studies in CFS patients point to a reduced activity of the hypothalamus-piutitionary-adrenal (HPA) axis with associated reduced glucocorticoid levels. Where it is often assumed that reduced HPA activity is responsible for many of the symptoms of CFS. Some studies suggest increased nitric oxide values ​​for the reduced activity of the HPA axis, although other studies come to opposite conclusions. (Ref.: 1)

However, low glucocorticoid-values ​​are not capable of inhibiting the nitric oxide synthase (iNOS) in a number of cell structures and to counter the pro-inflammatory cytokines (IL-1β, TNF-alpha and IL-6) (Ref.: 1) by which the raised nitric oxide and peroxynitrite is maintained. These effects can be seen as important elements of the peroxynitrite hypothesis.

It all seems so plausible to me... wow...

Kronk wrote:Interesting, especially considering many of the treatment protocols he advises are supplements commonly taken by MS sufferers to help. But that is a concern for me... did he develop the science and recommend supplements, or did he look at the popular supplements and manufacture the science to support. I do like that he states he is a PhD and not an MD and therefore says his theory should not be taken as medical advice. Maybe its because he looks like a tele-evangelist that makes me not trust him...

http://www.prohealth.com/library/showar ... ibid=17947

I am currently taken about half of the supplements on his list.

I, too, thank you for this link. Like you, I have taken many of the supplements for YEARS.

I had not heard of the nasal spray form of hydroxocobalamin:

Hydroxocobalamin form of B12. B12 is a potent nitric oxide scavenger, but it is difficult to absorb. Oral absorption of B12 is limited by intrinsic factor. [Independent of intrinsic factor, the absorption rate of B12 is less than 1% of the total amount ingested.] Hydroxocobalamin taken as a nasal spray or injection is more effective.

Prof. Martin Pall wrote a book in which he says that he believes that MS is a NO/OHNOO disease, along with 20 or so other "unexplained" diseases. I think he is right. http://www.amazon.com/Explaining-Unexpl ... artin+pall You can read the first pages on the Amazon website including on the link with MS.

His way of thinking is fully in line with and in fact part of the new concept on pg 1, where we can still discuss precisely what mechanism puts the NO / OHNOO cycle in motion and what keeps it going (EBV, ADMA, stress, or a combination of factors; does it become self-propelling at some point?).

As the following article says: It is An Elegant Explanation
•It is integrative: It integrates into a common scheme a wide variety of previously unexplained diseases/illnesses.
•It is comprehensive: It encompasses a wide variety of observations about these diseases including their patterns of case initiation, their chronic nature, and many of the shared and unique chronic symptoms and signs. It also explains the reported efficacy of over a dozen distinct agents. Each of these aspects has previously challenged explanation, and explaining their combination has been a much larger challenge.
•It is parsimonious: It explains by a relatively simple conceptual framework, many previously unexplained observations.
•It is fundamental: Because it is based primarily at the biochemical level, it explains much of the complexity of these diseases through the impact of a common biochemistry on a variety of organismal functions.
From: http://www.allergyresearchgroup.com/Exp ... sp-35.html

We are in whole new domain here, the domain of biochemistry. This matter needs a paradigm change.

lyndacarol wrote:

Kronk wrote:Interesting, especially considering many of the treatment protocols he advises are supplements commonly taken by MS sufferers to help. But that is a concern for me... did he develop the science and recommend supplements, or did he look at the popular supplements and manufacture the science to support. I do like that he states he is a PhD and not an MD and therefore says his theory should not be taken as medical advice. Maybe its because he looks like a tele-evangelist that makes me not trust him...

http://www.prohealth.com/library/showar ... ibid=17947

I am currently taken about half of the supplements on his list.

I, too, thank you for this link. Like you, I have taken many of the supplements for YEARS.

I had not heard of the nasal spray form of hydroxocobalamin:

Hydroxocobalamin form of B12. B12 is a potent nitric oxide scavenger, but it is difficult to absorb. Oral absorption of B12 is limited by intrinsic factor. [Independent of intrinsic factor, the absorption rate of B12 is less than 1% of the total amount ingested.] Hydroxocobalamin taken as a nasal spray or injection is more effective.

thank you Kronk and Lynda for the link and for your comments. I would agree with the big overlap between the supplements commonly taken by MS patients and the antioxidant protocol by Martin Pall.

http://www.prohealth.com/library/showar ... ibid=17947
I find the oxidative stress hypothesis and the list of recommended anti-oxidants / peroxynitrate scavengers very interesting. But my eye was caught by the comment on the last page on Vitamin D and its role to inhibit the synthesis of iNOS. wow... do we find here the first good explanation for the role of Vitamin D in MS?
Incidently, vitamin D also seems an important supplement when you start surpressing the EBV with valacyclovir.

I think by and large, MS doesn't have many secrets anymore. Almost everything we know finds an explanation on this thread. The challenge is to find the right forum for expression of the new insights.

I have now taken valacyclovir for 7 days and decided to stop with it, at least temporarily. I feel worse. My explanation is that the medication reactivates the virus and that the virus then gets onto the receptors which explains that the symptoms get worse. I follow the reasoning from Anonymoose a bit earlier on.

For the long-term, valacyclovir may be the right thing to take, as it stops the Herpes/VZV/EBV (HERV-W) from replicating, B-cells regain their effectiveness and the immune system is resurrected. But if your nerves are already 'thin' like mine, a reactivation of the virus may cause undesirable effects. I think it is a short term issue (how long? how rough?), not the long-term disability mechanism (how long would it take before valacyclovir becomes really effective?) (re: the double peak in the age of onset suggests a double mechanism: blocking receptor / inflammatory and inhibition differentiation/progressive).

I will now, following Anonymoose's suggestion, take advice on rituxan to get the B-cell count down to help resurrect the immune system. Any therapy should first and above all be directed at resurrecting/strengthening the immune system to get the virus down and keep it down. I believe that while (val)acyclovir may help in certain cases to achieve that goal, there may be other ways to help to get the immune system right without reactivating the virus.

Besides Anonymoose, I wonder whether there are any other patients reading here that have experience with (val)acyclovir and or rituxan.
http://www.ncbi.nlm.nih.gov/pubmed/22458983

see also the new update on pg 1: http://www.thisisms.com/forum/general-d ... 15188.html

Hi Leonard,

Do you supplement vitamin d? My problems with valtrex initially were related to vitamin d supplements feeding high levels of calcitriol (overproduction or broken feedback loop?) which hurt...all previously damaged nerves got extremely hyperactive (I guess). When I stopped taking vitamin d and stayed out of the sun, I didn't experience that particular symptom worsening. I had the same problem both before and after rituxan. It seems like eventually the valtrex started affecting my copper and ceruloplasmin levels as well. That caused a different set of symptoms that were manageable with high copper supplementation but as long as I took valtrex, I had to keep taking copper and I wasn't comfortable with that. I have no idea why any of this would happen but I don't think any of my complications were related to viral reactivation. I am female so the strange phenomena could be a girl thing and you might have a different guy thing working.

Since stopping the valtrex, I'm doing great. The biggest improvement is in energy...nothing impressive happened with sensory symptoms though my minor vision issues have cleared for now. I hope the rituxan does good things for you too.

Hi Anonymoose,

thank you for your reaction and the information. I don't take extra vitamin D other than a spoon of cod liver oil every morning which combines vit D with Omega 3. I have understood this is a much more effective combination. I can not handle vitamin D supplements very well because my shoulder will become very painful. I fell on it some time ago, then got it fixed by surgery and fell on it again. My explanation is that the vit D supplementation does something which 'inflammates' the tendon/muscles in the shoulder which are tightly encapsulated. I also consider my vit D to be low because my body regulatory system regulates it down. In 2008/2009, when disease activity was higher, I had regularly blood samples taken and despite a lot sunshine, I saw my vit D level drop down significantly. Since then, I have always felt insecure with vit D supplementation. I am not sure whether it is the right thing to do or not.

Do I get you right that you took Valtrex for a longer period of time? What were your experiences? In the beginning? And later on?
I am ready to take the medicin for 10 years as Scott did, but I need to feel that I do the right thing. If I remember well, you talked in an earlier posting about a rough course... On your supplements, do you attribute the shortage to the use of Valtrex? Please let me know. Thanks a lot again.

Leo

Hi Leonard,

Bad luck about the Valtrex. Can you tell us, have you followed the steps as I laid them out? In particular, have you checked for other infections such as mycoplasmas etc? The Valtrex will work on a wide range of herpes family viruses but could stir up other infections if you haven't treated them first. I think I said deal with them first as they get in the way. Your response sounds very much like herxing. How big a dose are you taking?

Another, perhaps gentler, approach you could take is to use green tea extract (epigallocatechin-3-gallate) as that inhibits EBV B cell infection (see http://cancerres.aacrjournals.org/content/69/2/583.long ) I take that now along with curcumin as a preventative. At your stage I prefer valacyclovir but you need to be as clean as possible to avoid the issues you are experiencing.
My approach has several strands to it. Are you also taking the carrot juice and the Q10? Is there anything else you are doing?

On a separate matter, I did have a tightly encapsulated shoulder some years back so I had a series of injections of water and cortisone into the joint to force it open and soften adhesions. Then I did a lot of shoulder mobilization work at Pilates. Now I have no problem at all. It can be fixed but you need to do some strength work when the joint is forced open by the fluid.

Regards

My first course, before rituxan, I took 1500mg/day for about 3 weeks with vitamin d and other supplements. Then the pain started. I stopped taking valtrex and all supplements and it cleared over a few days.

The second course, after rituxan, I took 500mg/day for about 5 months. As soon as I started taking vitamin d, the pain returned. I could take tons of vitamin d and sunbathe a lot always as long as I wasn't on valtrex. I doubled my dose at about month 3.5 and despite the fact that I wasn't taking much vitamin d, the pain flared up. I had copper measured when the first post calcitriol flare happened. It was around 100. Months later when I had developed new problems, I tested again and it was just barely low (I was already taking copper and didn't washout before blood draw so it was likely even lower than tested). There's a whole messy post about it here in general forums. "Jimmylegs too much vitamin d = ouch?" When I stopped valtrex, my need for copper waned away for the most part. The sun stopped making me hurt too. So, yes, I do attribute my bloodwork/symptom issues to valtrex. I think I'm still a bit low on copper but have been very busy so haven't retested anything since stopping valtrex...just assuming things are better because I feel better.

Scott1 may have some better ideas...co-infection?

Scott, Anonymoose, thank you! I will come back to this. I need to take broader advice now.

This recent publication is really very interesting and in my view captures it all.
It is fully aligned with and/or complementary to the concept on pg 1.
http://www.medpagetoday.com/Neurology/M ... osis/44861

Hi Leonard,

Don't for get Valtrex is a purine so if you are taking an anti-purine they will contraindicate. Maybe check what your other medications are doing.

Also, this link may be useful - http://www.drugs.com/drug-interactions/ ... ltrex.html

Regards

Isentress more effective than Valtrex?

http://omicsonline.org/evidence-that-ra ... ?aid=18477

Molecular defects have been identified in toll-receptors, related interferon signaling pathways associated with herpes simplex encephalitis and shingles due to VZV (varicella zoster virus) as well as defects in NK (natural killer)-cells associated with overwhelming EBV (Epstein-Barr Virus or Human Herpes 4) infection in the syndrome of XLP (X-Linked Immunoproliferative syndrome).

...

This report is the first to present evidence that retroviral integrase inhibitors may be an effective therapy for herpes virus related illness in an HIV-negative patient with a deficiency of NK-cells. A 34 yearold HIV negative woman was referred for severe episodes of oral cold soresbeginning in childhood which were unresponsive to oral and topical acyclovir and/or Valtrex combined with oral corticosteroids.

...

Raltegravir might be offered on a case by case basis to pediatric or adult patients with non-HIV related herpes pathology not responsive to conventional therapy such as acyclovir and related nucleotide inhibitors since this class of medication seems relatively safe even in patients with severe defects of cellular immunity due to AIDS.

...

... with the expectation that herpes virus pathology such as herpes simplex, herpes zoster, or EBV related pathology such as auto-immune syndromes might be decreased in the Raltegravir-treated groups over time ..

Hi Leonard,

I don't think we can tell. That article focuses on Human herpes simplex virus which resides in nerve clusters. EBV resides in B cells and the EBV infected B cells produce excessive superoxide. That leads on to peroxynitrite which I think is a major problem. I don't know whether simplex has a major role in superoxide production. I haven't read anything about it.
Maybe it's effective but if you have a range of underlying infections then you might experience the same problem as you are having with Valtrex.
It's always about knowing as much as you can. I would getting a broad range of tests for different infections if I was you.

Regards,

today on the BBC radio http://multiple-sclerosis-research.blog ... tiple.html