This Is MS Multiple Sclerosis Knowledge & Support Community

Oh, please. AMA has not "rejected" CCSVI. I'm not actually aware of them having any stated position on the topic (a search of their website turned up nothing), so if you have a reference that would be great
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You are right ScutFarkus--I meant the US MS association, and they are just saying do nothing til more info in, certainly appropriate advise.

I guess I was just riled by your using Quackwatch as a seemingly good reference--he has been denounced enough times that I thought anyone savvy ignored him by now.

And my point was that chelation has been denounced for years by the sources you site, yet there are many good things coming from chelation. It is too late tonight for me to cull thru and post positive info from respectable sources, but will do so in next few days. I also know a number of people who have had great results with chelation (though not MS patients).

One of my concerns about this whole thing is that no one is addressing the fact that they find tons of iron in the brains of Parkinson's patients. How does it get there if there is not the same issue of venous insufficiency/reflux? It seems to me that iron accumulation in the brain is probably due to lack of glutathione/antioxidants. In India, they have treated Parkinson's for centuries with the velvet bean which contains natural l-dopa, but has also been found to chelate iron out of the brain, same as curcumin... curcumin of course being the interesting compound in turmeric that reverses EAE mouse model MS...

impressive Merlyn, you have really done some great research and thinking.
I take curcumin, but only 700 mg per day--will need to do more research on it, and come up with a protocol including a number of chelators, IP 6, malic acid, etc.
I know you are waiting for the IP 6, but are you now taking any other chelators?

I will most probably start EDTA next week--need to do lots of studying on the two options, Calciium or Disodium, and their impact on MS and a few other health issues I have--and discuss my findings with Dr and come up with which we will use.(she is rare in letting me have major input in what we do, but of course she has final say. )--She also gave me script for the color doppler recommened re: CCSVI, and left it for me to contact radiologists to discuss it. I'll print out the protocol for them--but now read that since this on veins, and the usual is on arteries, will have a hard time finding anyone expert in it. So will contact the MS clinic at a major teaching hospital here (NYC), and see if they have heard of CCSVI yet, and if they have a radiologist that might be more versed in this than the usual. But this is something I can do even after the chelation, so no great rush.


And Merlyn, I think you raise incredibly good questions. Indeed, the point re: iron and parkinson's impacts this whole issue, and is one more reason to wait and see what develops here rather than rush in hastily--meanwhile, doing our own research. I'll try to see what I can re the Parkinson's iron--who knows, if enough of us check into it, we might be able to make a connection with the MS iron deposition.

http://www.heal-yourself.com.au/Disease ... tosis.html

A long time ago I came across a study that said iron storage in the body is mainly controlled by levels of antioxidants. Quite frankly, because 100% of people with MS test low in glutathione, the body's main antioxidant, my guess is the iron problems are related to genetically low levels of glutathione. I am beginning to think that the way to address this genetic defect is to supplement with high levels of vitamin C, which it turns out also chelates iron. Low levels I gather increase iron absorption, but higher levels can correct the problem of iron storage. I am going to start increasing my vitamin C up to about 7 or 8 g a day, do the IP6 which I just received, continue my gamma E., and continue my experiments with l-dopa. There was a researcher at the University of Victoria by the name of Harold Foster that has a book online called What Really Causes Multiple Sclerosis, and fascinatingly enough he points out that Parkinson's and MS share the same geographical pattern. It is a fascinating read and he said that in Sweden they treated people with MS with l-dopa and got amazing improvement. However, because of low levels of glutathione, the l-dopa breaks down into a toxic compound called dopa chrome that poisons the myelin. He says if you add in very high levels of antioxidants to the l-dopa you can prevent this formation of dopa chrome. Velvet bean has natural l-dopa and chelates iron out of the brain... how quickly I don't know... I just know that iron is what poisons the area of the brain of Parkinson's that produces l-dopa, and I suspect that we probably have the same problem... people like Randy Schapiro say that it doesn't take much l-dopa to help MS spasticity etc.

I am not sure that these twisted narrowed veins are congenital. As far as I can figure out, vascular narrowing is due to inflammation, which is probably caused by free radical damage which would indicate low levels of antioxidants. There is no such thing as a genetic epidemic, and MS is increasing worldwide. My guess is that environmental toxins are placing great strains on our antioxidant levels and causing all kinds of not only vascular damage but nerve damage etc. There have been reports on cure zone of dramatically lowering iron levels with very high supplementation of iodine, which would actually fit into Harold Foster's work. This book is online if you have any interest in it:

http://www.hdfoster.com/


Who knows? I just know I am not in either financial or physical shape to pursue Zamboni surgery. Plus I am in Canada and I think that it's going to be a while before any of this becomes a government financed procedure. Plus, I cannot see this procedure correcting whatever underlying metabolic problem exists, although at this point any relief of symptoms would be sure welcome.

Merlyn,
NAC (N Acetyl Cysteine) helps you produce more glutathione (don't buy glutathione--it is not absorbed). (I've been taking it for yrs due to liver problem--I don't think it is a genetic problem to be too low--just overusing it in our extremely toxic environment--or possibly not making enough, due to deficiencies from our bad diets).

I'm with you on the doubt re: genetic component to the twisted narrowed veins--as discussed above, could be greatly aggravated by bone, neck malformations, and as you say, inflammation could be the cause.

A great thread here that answers some of your queries re: iron is
Lesions and SWI--just read it, very informative. Leads me to start thinking and researching on the Blood Brain Barrier--maybe THAT is the reason for too much iron getting into the brain? and/or for too many things that destroy antioxidants getting thru?
Will do some research on it this weekend, and then start a thread.

shye, I wrote briefly about this on the lesions thread. I too have been thinking of starting a thread. Let's put our heads together.

Just a comment on glutathione: as you probably know, our bodies produce glutathione, and there are ways to boost that production, but as for supplementation, a good quality reduced glutathione is readily absorbed and utilized. I will try to post that info. here, but with all of these threads, a 3 year old boy, and my eyes getting funky, it might take a bit.

Hi Johnson,
would love at some point--realize for all of us, either no energy, other duties, etc, EVERYTHING takes more time-- to see the reduced glutathione info--the research I did on that was over 10 years ago, but definitely then the reduced was no good. NAC was what gave your body what you needed to produce glutathione. My Dr does drips of glutathione, I think a lipo based form, but I don't think I need to go to that extreme-and it is too costly.
I've developed a good supplement protocol, and if I stay off wheat and milk (and lots of other stuff I'm allergic to) I do pretty well.

Yes, after I've done some research on the blood brain barrier, I'll private message you, and we can get our heads together--and also start the thread.

HI Merlyn,
Thanks for the Foster link--just went thru it--skipped part, like the D which I've been researching heavily--and semi skimmed, so will go back--what I found most interesting was the iodine/thyroid connection--I am hypo, and use dessicated thyroid. And the link of this with Parkinson's was fascinating. This link with MS is new to me.
I knew of the link with milk and gluten (both of which I'm allergic to)--My milk reaction is immediate and pretty severe, so has become easy to avoid it--But wheat, gluten doesn't always affect me immediately, so cheat sometimes, but always regret it. Today I cheated, and really had trouble walking straight. I'm sure I look drunk the way I weave, but also hard just to move the legs. So I know it is crazy that I cheat on this. Food allergies affect my whole body, brain, thinking, eyes, writing, walking. But when am super diligent, walking becomes okay, writing pretty much okay (I print, much easier), thinking a lot easier--yet pretty much no matter what, get exhausted very easily.

Have you eliminated milk and gluten? This produced the most profound changes for the better for me--and really know it is working because when you cheat you really regress.
I'm also on a massive amt of vitsamins, minerals and antioxidants-- all very helpful.

I cannot take N-A-C due to deranged sulfur metabolism... my levels of cysteine are so high they are already neurotoxic. My problem in making glutathione is the lack of glycine and glutamic acid... can you say Mercury poisoned?

I am actually experimenting with nebulizing glutathione. My environmental illness Dr. has been telling me to do this for years, because when you nebulize glutathione therapy is no blood brain barrier in the nasal passages so it gets directly to the brain. There is a company called Theranaturals.com has come out with a capsule GSH plus that you can nebulize, so it is now affordable! I am doing 400 mg, but so far I don't notice any reaction good or bad. Mercury interferes with thiol metabolism and I showed up on eight different metabolic tests as being severely compromised in the way I handle sulfur. I think there is a problem with iron storage when you are sulfur challenged. I've seen many references to this I would have look them up again.

For years, I did not do gluten or dairy and I found it made absolutely no difference in progression. Sulfur free diets can totally eliminate spasticity/stiffness, but sulfur is in everything so I find it almost impossible to follow the diet like this and I am addicted to coffee, which is full of sulfur. I think I was extremely hypothyroid in my teens and 20s, and am now on straight time released liothyronine. Took me years to find the right medication/dose. That is what Harold Foster says in his work, that people with MS have problems converting T4 to T3 and that was definitely my case, took me years to find a Dr. that knew enough to look for it. I finally have proper energy and it had nothing to do with anemia. T3, the active form of the thyroid hormone controls everything, digestion, cellular respiration, sleep cycles, peristalsis... without it you have no strength or muscle mass... anyway, I may have some academic knowledge, but really I am still a mess and don't have real answers.

Fascinating, once again Merlyn.
Before I comment, 2 points: do you take digestive enzymes? Probiotics?
I find the dig. enzymes very helpful, and was taking probiotics, but apparently not enough. In this dental saga, recently had to have an abscessed root canal removed (abscessed due to tthe trauma of being hit constantly due to the poor way crowns were placed)--was really toxic, had to take antibiotics--and so researched probiotics--took huge amts of a number, including a new one for me, Reuterii, which really seemed to help. I continue with high probiotics. Was not breast fed, and fed heated pasteurized milk--I wonder how many other MSers had that beginning--I think this sets you up for a lilfetime of health problems.

I also have a problem with sulphur--extreme reactions to sulphur preservatives, and to sulphur medications. Yet seem to tolerate NAC, and B1 okay. Have not tolerated eggs for years, but recently started to sporadically try them-so far, okay.
I think you are incorrect about coffee--minimal sulphur in it if I recall correctly.

I tried the cytomel, and felt a million times better, but then the dr upped the dose too high, and caused a real problem. Then could not get back to any correct dose. was put on that standard t4 medication, but i clearly don't make t3 (have a compromised liver , lots of probs with meds, etc) Finally found the doc I see now (osteopath) who will explore stuff with me. Found the best so far is the desicatted thyroid (tried to mix it with cytomel, couldn't regulate it). But can't say get a great amt of energy using it--don't operate at all without it, but with does not really solve the energy problem fully.

I will start Chelation on tues--just a trial run, since I react so badly to so many things. So I guess the real start is the week after. I'll keep you posted because I think it might help with a lot of things, particularly in normalizing the trace elements. Spent all last night and today researching it, and am even more excited about it after some of the new stuff I read.
Yes, we might have academic answers, and are still a mess--but the doctors have even more academic answers, and yet they have not come up with answers for us--I think it is up to us at this point to connect the dots, and hopefully this site will help do that. I basically use my doc for tests, scripts, and a bit of feedback--I am lucky that she listens to what I come up with, and gives me the scripts (as with daily methl B12 shots) to try what I feel is important.

forgot to mention--from what I read, iron storage is not the problem--it is the abnormal deposition of Iron in spots where it harms that is the problem. And it is a finding in many diseases, and no one has yet discovered the mechanism of this happening.
The only thing I see that might possibly help is chelation. I'll keep you posted on that angle.
And it is not just iron tht is deposited incorrectly--happens with other trace elements--it is just known tht iron can cause great oxidation problems, so iron is focused on. Who knows, so much is still a mystery, it could be one of the other elements that is causing our problems.

bumping this thread with the interesting story of Matteo (SP MSer)
http://www.matteodallosso.org/eng/

he has a free pdf downloadable with his experience at heavy metal EDTA chelation mentioned in this topic before

frankly, i didnt have time to read it, it just sounded interesting for further research...

Coffee is high in sulfur/thiols:

http://livingnetwork.co.za/chelationnet ... food-list/

More information can be found in Andy Cutler’s excellent book: “Amalgam Illness: Diagnosis and Treatment”. Available here.



Foods high in thiols
artichokes, Jerusalem but not French
asparagus
bakery products containing whey, cysteine, eggs or enzymes
bean curd/tofu milk
bean sprouts
beans of all sorts
bok choy
broccoli
brussels sprouts
cabbage
carob
cauliflower
cheese of all sorts
chives
chocolate
coffee
collard greens
cream
daikon
dairy products
eggs
garlic
green beans
horseradish
jicama
kale
leeks
lentils of all sorts
milk from any animal
miso soup
onions
papaya (slightly)
peas
peanuts
pineapple (slightly)
radishes
rutabaga
sauerkraut
shallots
sour cream
soy cheese
soy milk
spinach
split peas
tempeh
Tofu
turnip
Turmeric (though not high in thiols, it is really good at raising thiol levels)
greens
whey
yeast extract

Also,
Watch out for foods that have garlic and onion powders added e.g. processed meats like hot dogs.
Meat is also high sulfur, but most people tolerate it due to low thiol level and it depends upon how sensitive you are. If you need to limit meat, then you would also need to supplement amino acids, especially glutamine. This also helps to heal the gut lining.

Also, just wondering whether you have ever experimented with oral EDTA... some doctors say it is just as effective.


http://www.gordonresearch.com/articles_ ... rowen.html

The next question is if oral EDTA is absorbed. The worldwide literature shows oral EDTA is absorbed from five to 18 percent. Comparing this modest absorption with the typical three grams given intravenously once or twice weekly, one might take orally six to 7.5 grams (one gram per 35 pounds body weight) daily. The calculated absorption at an average of 10 percent would be some four to five grams over a week, quite comfortably in line with what is administered intravenously. However, rather than a cost of perhaps $800 for IV administration (eight over a month), the oral cost is approximately $60/month, a price most everyone can afford.

In this month's "Forbes" magazine is an article called "Heavy Metals Inc."

http://www.forbes.com/forbes/2010/0118/ ... s-inc.html.

I don't know if this link will work unless you become a member which is free.

Basically it calls chelation "bunk", and cites many studies to support it's assertion. They were talking about IV chelating chemicals, not natural supplements

This is a business magazine, so I was expecting it to be all about some savvy entreprenuer making tons of money chelating the sick.

Nope. There was no punch line, just a warning to us and our wallets.