This Is MS Multiple Sclerosis Knowledge & Support Community

This was posted at ccsvi locator. I hope this has some positive implications for CCSVI:

http://ccsvi-ms.ning.com/profiles/blogs ... -sclerosis

Personally, speaking only as a MSer, and not as a doctor or researcher,
I am 100% convinced that free iron deposition is the key culprit in initiating the cascade of symptoms called "MS."

I have evolved a personal protocol for removing iron and I have experienced some symptom improvements. These improvements are very gradual, subtle, but consistent. This recovery pace doesn't surprise me considering I have been progressive for twenty years.

I wish I could have a iron/MRI study to determine exactly what my iron load is.

I think that the best way to treat CCSVI is to have the underlying venous disorder corrected, accompanied by an iron removal program.

My opinion only.

Donnchadh

Donnchadh wrote:I have evolved a personal protocol for removing iron and I have experienced some symptom improvements.

Do tell???

Rokkit wrote:

Donnchadh wrote:I have evolved a personal protocol for removing iron and I have experienced some symptom improvements.

Do tell???

I am reluctant to give this out publicly because I am NOT a doctor-I can only relate on a person to person basis my experiments and results.

I would also like to emphasize that this is NOT a miracle cure-it's a gradual progress of removing iron.

Donnchadh

Fascinating. This study came out in 2003. Yet one more missed opportunity!

How did all the naysayers respond to Dr. Bakshi? I suspect in much the same way as they are to Dr. Zamboni.

Yet, Dr. Bakshi is a professor of neurology at Harvard and Brigham and Women's Hospital. He is also Director of Laboratory for Neuroimagin at the Partners Multiple Sclerosis Clinic. It would be interesting to know his position on CCSVI.

Here is a link to Dr. Bakshi's website. http://www.drbakshi.com/

Blaze wrote:Fascinating. This study came out in 2003. Yet one more missed opportunity!

How did all the naysayers respond to Dr. Bakshi? I suspect in much the same way as they are to Dr. Zamboni.

Yet, Dr. Bakshi is a professor of neurology at Harvard and Brigham and Women's Hospital. He is also Director of Laboratory for Neuroimagin at the Partners Multiple Sclerosis Clinic. It would be interesting to know his position on CCSVI.

Here is a link to Dr. Bakshi's website. http://www.drbakshi.com/

Good find, Blaze. Actually, if you see the list of publications, he has regularly contributed along with Zivadinov, Bianca Guttman (Buffalo connection I guess) ...

Also remember, Blaze that there was a paper in 2006 where autopsy of a patient did not show immune activity who was in acute relapse state. She died during that relapse. The authors concluded that the immune activity followed cell death.

http://www.sciencedaily.com/releases/20 ... 075914.htm

What causes the cell death?

fast forward to 2010 ... or go back to 2006 (Dr. Z's findings) ... or go back to schelling ....

When I started to get my first symptoms, serious fatigue, stiffness of joints in 2007, I had my first series of blood tests. The only thing that stood out was high iron levels (most notably high transferrin saturation), which my doctor ignored.
My first and only brain lesion appeared two weeks after that blood test, and I lost use of my right hand. I was told I probably has MS and was sent home. I accepted the fatigue and just lived with it, and was unable to work, and thought nothing more of those high iron levels till January this year.

Come January 2010 I was also developing a blotchy tan on my lower forearms. I researched it and it can be a sign of iron overload.
I saw a hemotologist who dismissed me as my iron levels were not high enough for classic iron overload. He did suggest if I was worried to donate blood, but thought the best person to see was my neurologist!

Three blood donations this year and I am nearly back to normal. No more "brain" events, the blotchy tan on my arms is fading. The fatigue is all but gone, although I do get a stiff and sore and more tired when I'm due for my three monthly phlebotomy.

Each time I get blood taken, I get better and better, the effect is almost instant.
I know I've found what works for me, and it definitely has something to do with blood, saturation of iron, high hemoglobin.

I'm am just so pleased that I didn't leave this to the professionals, or I would be still sleeping my life away, with little quality of life, and being sent home to "live with it".

I am close to what a doctor would class as anemic now, but have heaps of energy.
My transferrin saturation has gone from 62% down to 20%.
My hemoglobin is still high.

Three years of hell, but I'm coming out the other side now.
There has to be something to this.

My sister has RRMS. But has been quite well for the past five years.
She was injected with courses of iron when she was a teenager and developed MS in her late 20's. It really makes me wonder!
She is quite well now, and it really makes me wonder if it has taken her this long to get over those injections. The body can not get rid of iron easily, only like through skin shedding and bleeding.

I don't think iron should be put into the body on a whim, or through our breakfast cereals, flours etc. It is toxic in excess.

Yet, Dr. Bakshi is a professor of neurology at Harvard and Brigham and Women's Hospital. He is also Director of Laboratory for Neuroimagin at the Partners Multiple Sclerosis Clinic.

It would be interesting to know his position on CCSVI.

Without claiming to know his position, he did not object when I told him I was going to Albany. But he said he himself would NOT go when I pressed him on what he would do in my shoes.

Bethr wrote:I don't think iron should be put into the body on a whim, or through our breakfast cereals, flours etc. It is toxic in excess.

I agree with this. It is very difficult to find cereals or flour without added iron. I try to remember to take my green tea supplements....

Bethr wrote:Three blood donations this year and I am nearly back to normal. No more "brain" events, the blotchy tan on my arms is fading. The fatigue is all but gone, although I do get a stiff and sore and more tired when I'm due for my three monthly phlebotomy.

Each time I get blood taken, I get better and better, the effect is almost instant.
I know I've found what works for me, and it definitely has something to do with blood, saturation of iron, high hemoglobin.

Being a Canadian and having had MS means I cannot get Liberation or donate blood.

I don't think iron should be put into the body on a whim, or through our breakfast cereals, flours etc. It is toxic in excess.

I had a lawn service put stuff on my lawn this year. Herbicides are outlawed here but they've found this cool additive.

It has killed everything but the grass, in a way I've never seen. They won't use it on the sidewalk. Reason? It stains. It's main ingredient is iron. So iron seems to be a potent broadleaf weedkiller.

ms patients are on average low in zinc.

study:

Zinc Deficiency-induced Iron Accumulation, a Consequence of Alterations in Iron Regulatory Protein-binding Activity, Iron Transporters, and Iron Storage Proteins
http://www.jbc.org/cgi/content/full/283/8/5168

I am concerned that people browsing the site could gain the impression that iron is the answer to our disease. MS is far more complex than just iron, which is a small part of the big MS picture.
Kind regards,
MarkW

given the home page, i sincerely hope that impression would not be given. however i too hope no-one thinks ms is all about iron. actually i would be quite surprised if even the most assiduous iron chelating patient thinks ms is all about iron. for the record, i do not avoid iron.