I have most of the symptoms you originally list. I believe I have a pancreatic deficiency, which I help out by taking enzymes. You say taking them does not help. It does help me, but it does not cure. I have had very sharp pains in the pancreas area when I eat too much protein or fat. I am on the Swank diet, which helps, and reduces both the sharp pain in the pancrease occuring (hardly occurs now) and also the other symptoms.

I had very low hematocrit when young; but now I have another disease, Porphyria, and another one besides that, Polycythemia Vera. Since getting the last one 7 years ago, I have a high hematocrit and have to have phlebotomies, and have gone to Mayo to reduce blood platelets by radiation.

Now the Porphyria is an interesting topic in relationship to your thoughts, Annesse. Porphyria is specifically caused by a low enzyme among the 8 in the hemaglobin synthesis pathway. It is thus a metabolic disease in which a low enzyme is THE known cause. It is genetic. There are several forms, each based on a low enzyme from among the 8. But the symptoms are mostly the same for all of the types except for the addition of skin problems in two types, and the existence of a separate type which is skin-only, and is the most common in America (Porphyria Cutanea Tarda).

I have very severe "RLS" but i do not call it that. It is better called Myoclonus, and the leg and back jerks are called Myoclonic seizures, although they do not affect the brain.
I have these under 95% control by taking a large dose of magnesium, which was recommended by a neuro over 20 years ago when I could not take the MS drugs which are used for such problems as spasticity and jerkiness. So I am of course interested in your supposition that this "RLS" is a part of the syndrome.

I could go on for hours, but am just saying that I find the suppositions interesting and worth investigating, but I am saying with daisy.girl, let's have it all in one post, and let's hear how the diet helps. And also need explicit statement of how one tests for this syndrome, and who does it?

I would be quite amazed if my porphyria is related to this syndrome. There is no way I could even guess about that without more information. But I do say that I have, or have had, almost all the symptoms you list, but with changes over the years from low hematocrit to high being the most obvious one.

*edit*

What the researchers found was that MS patients have reduced levels of noradrenaline. Noradrenaline is derived from dopamine.

Erika~The information you posted on supplementation is one reason why it is important to understand the entire disease process. Just because you lack something doesn't mean it is a good idea to take additional in supplement form. What if you cannot properly metabolize the nutrient and that is the reason you lack it? For instance, the lack of DNase1 in lupus led to unbroken down protein particles and DNA in a lupus patients bloodstream. The immune system targets these protein particles and DNA because they are foreign. Much like a celiac patient is unable to digest the protein gluten and the immune system is reacting to the unbroken down gluten fragments. Would it be a good idea for a celiac patient to take isolated portions of gluten into their bodies? Here is something I have written previously on this topic.

"A word of caution: The lack of amino acids found in CFS and fibromyalgia
are a result of the inability to digest dietary proteins. If you are unable
to digest proteins, you would also be unable to properly metabolize
the amino acids of which proteins are comprised. The previous study
“Cobalamin Malabsorption Due to Nondegration of R Proteins in
the Human Intestine” showed that pancreatic enzymes are necessary to
degrade R proteins (amino acids). The inability to digest proteins and
amino acids is what led to the unbroken down bits of protein and DNA
in the bloodstreams of lupus patients. The immune system targets these
proteins and forms immune complexes, which then become lodged in
healthy organs and tissues. Taking additional amino acids in supplement
form would lead to an increased risk of disease. This is evident in the
findings from the study entitled “Intermediary Metabolism of Phenylalanine
and Tyrosine in Diffuse Collagen Diseases” (Nishimura, 1959). When
lupus patients were given supplements of tyrosine and phenylalanine, the
supplements “unfailingly aggravated both clinical signs and laboratory data
of collagen disease.”

Hey daisy.girl~I am trying to explain the entire disease process by taking each symptom and tracing it back to these missing enzymes as evidence that this is the source of MS. So that really is it in a nutshell; missing pancreatic enzymes that break down dietary proteins and DNA are lacking in MS and in other autoimmune diseases and this is what leads to all of the symptoms and scientific findings in these diseases. How do you fix it? By restoring these enzymes through diet, healing your GI tract, destroying pathogenic bacteria, replenishing beneficial bacteria, intrinsic factor, HCI, and avoiding any and all things that deplete or harm you entire GI tract.

Hi Mariel~We can trace the buildup of porphyrin directly back to PEDD. Again, here is something I have written previously on this.

"The body makes heme mostly in the bone marrow and liver. The process
of making heme is called the heme biosynthetic pathway. Each step of
the process is controlled by one of eight enzymes. If any one of the eight
enzymes is deficient, the pathway is disrupted. As a result, porphyrin or
its chemical precursors, may build up in body tissues and cause illness
(National Institutes of Health, 2008).
Porphyrin can accumulate in the skin and cause photosensitivity. Exposure
to the sunlight may cause symptoms such as redness, rash, itching, burning,
blistering, and swelling. Once triggered, an episode can escalate and cause
even more toxic porphyrin to build up in the tissues, leading to even more
serious illness.
The first component in the heme pathway is succinyl-CoA. Vitamin
B12 serves as a cofactor for methylmalonyl-CoA mutase which converts
methylmalonyl-CoA to succinyl-CoA. Therefore, a lack of vitamin B12
would lead to a failure in the entire heme pathway."

I wanted to go through the missing neurotransmitters first and then show why MS patients are unable to metabolize vitamin B12.

I take B12 injections, and my blood serum level goes up....but I don't ever feel better. Why is that?

I'm not up on how the succinyl-CoA and the methylmalonyl-CoA affects the heme pathway, having never read anything like this in 16 years on line after Porph dx. But I await more information, and if you are right, the porph community awaits! Some porphs have tried B12 but it does not seem to be a help in most cases, that is, taking the big dose shots. Of course most of us with porph do take multi-vitamins. My favorite B Complex is the sublingual from Source Naturals.
many of us with Porph do have that problem you mention of digesting protein and fat, but most of us are on a balanced protein-carb diet because it is essential for porphs to have enough carbs. Without enough carbs, starvation sets in and a porph attack results.
So dieting is hard for porphs. The primary symptom of porphyria is acute abdominal pain, which I had when young, but do not have so much now that I know how to avoid triggers and how to eat. Avoiding triggers is the MAIN thing in porph, rather than adding supplements, although most take supplements in moderation. Yes, too many supplements, big trouble.

Just remember, in re porph, however, that each of us with porph has one enzyme low in the heme pathway, but it is not the pancreatic enzyme system. That does not say that we could not have a low pancrease enzyme as well.

Of course we all here on this forum would like to know how this relates to MS.



Thank you.

Mariel

I will most likely sound like a broken record by the time we are done, if I don't already; taking nutrients into your body that you are unable to metabolize is a bad idea. Protease are "essential" for the proper metabolism of vitamin B12.
That is most likely why taking supplements of B12 are not effective. They can however, dramatically increase your risk of cancer according to studies. Cancer cells put out receptors to B12.

As I stated about the heme biosynthetic pathway:

"The first component in the heme pathway is succinyl-CoA. Vitamin
B12 serves as a cofactor for methylmalonyl-CoA mutase which converts
methylmalonyl-CoA to succinyl-CoA. Therefore, a lack of vitamin B12
would lead to a failure in the entire heme pathway."


How does this apply to MS and other autoimmune diseases? MS patients are unable to metabolize vitamin B12. Numerous studies confirm this. Here are the titles to a few. These studies particularly refer to the inability of MS patients to "metabolize" vitamin B12.

Multiple Sclerosis Associated with Vitamin B12 Deficiency
Reynolds, E.H., J.C. Linnell, J.E. Faludy. 1991. Arch Neurol. 48(8):808-11.

Vitamin B12 Metabolism in Multiple Sclerosis
Reynolds, E.H., T Bottiglieri, M. Laundy, R.F. Crellin, S.G. Kirker. 1992. Arch Neurol.

Vitamin B12 and its Relationship to Age of Onset of Multiple
Sclerosis
Sandyk, R., G.I. Awerbuch. 1993. Int J Neurosci. 71(1-4):93-9.

So, are you saying that taking my weekly B12 injections is worse for me then having a dangerously low level of B12??

Hi Daisy~Everything I say is just my opinion of course, but a large study done in Norway that tried to lower the risk of heart disease (more on that later) through the use of B12 and folic acid found that the supplements not only did not lower the risk of heart disease, but they increased the risk of developing cancer by 38%. Here is some information on this study.

http://coloncancer.about.com/b/2009/...ancer-risk.htm

There were very small amounts of supplements given in this study. About the amount you would get in a bowl of cereal and a multivitamin.

In addition, if you are unable to properly metabolize vitamin B12, no amount of supplemental B12 will correct this. If it doesn't work, then why take the risk associated with supplementation? Taking a pill that increases your risk of cancer by 38% is a very large risk in my opinion.

One of the main findings in autoimmune disease is spinal cord degeneration. According to the National Institutes of Health, subacute combined degeneration of the spinal cord is "caused" by a vitamin B12 deficiency. As the following study shows, spinal cord degeneration can occur even with high levels of B12 in the serum.

Subacute Combined Degeneration with High Serum Vitamin B12
Level and Abnormal Vitamin B12 Binding Protein. New Cause of an
Old Syndrome
Reynolds E.H., T. Bottiglieri, M. Laundy, J. Stern, J. Payan, J. Linnell, J. Faludy 1993.
Arch Neurol. Jul;50(7):739-42.

I am not saying you shouldn't try and correct this, I am just saying taking supplements, in my opinion, is not the way to do it.

@Annesse: Is there any printed reports on the athletic respects or correlation to why more bodybuilders aren't struck with MS? Seems to me that bodybuilders, workout junkies & the like...who take excess amino acids & boost their proteins both before & after workouts do not complain of any of the symptoms which we find in Auto Immune response diseases.

My reference: http://en.wikipedia.org/wiki/Serine_protease
(Chemar-I hope this is ok? My 1st reference)


Maybe I'm missing something here?

Hey New2net98~Good question.

If someone has sufficient enzymes to break down dietary proteins, then although I don't think it is a good idea to do, they should be able to break down the amino acids of which dietary proteins are comprised.

This would be very comparable I think to someone with sufficient protease being able to digest gluten. They could most likely ingest the peptides, of which gluten is comprised, without a toxic reaction. Someone that has lost the ability to digest gluten (due to a lack of protease) would most likely have a toxic reaction to the peptides.

The difference is you are talking about athletes and bodybuilders etc. verses autoimmune sufferers. I am not saying ingesting amino acids for a healthy individual will give you autoimmune disease, just that if you have lost these enzymes and are having symptoms of autoimmune disease, ingesting isolated components of these proteins will most likely,as the lupus study showed, increase your disease risk.

Is every autoimmune disease sufferer missing these pancreatic enzymes? If not, then that blows the whole therory of it being the cause of all Autoimmune diseases. May be a trigger for some but not the cause.

I tell ya, S T R E S S is the main trigger and the Herpes six viruses (chicken pox..etc..) are the cause of MS. Wait and see!!

Is MS even an Autoimmune disease??