Phlebotomy anyone?
Merlyn, do you know if the forum here is capable of wikis? This is when there is a post in the beginning of the thread that is the 'wiki' post. You put a summary or the most pertinent info into the wiki post and it can be added to as time goes on. I thought this might be along the lines of what you were looking for when you started the second phlebotomy thread.
Even if the forum does not have this, you could edit one of your first posts into a self-made wiki. Just put WIKI at the top. Then newcomers could get the full picture, or at least a lot of it, back on page one.
Even if the forum does not have this, you could edit one of your first posts into a self-made wiki. Just put WIKI at the top. Then newcomers could get the full picture, or at least a lot of it, back on page one.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Scott got back to me this morning, and I have submitted a seven page article to his publication. I do not want to post it here, because there will be questions about copyright... no one is going to publish something that is already posted on the Internet. I just figure this is the way to reach a broader audience if he publishes the thing. I also think that if he does publish it, it will look more official than an Internet posting and I could send copies of the magazine to the MS society etc. I don't know how long it will be before he gets back to me, but I will let you know.
My improvements continue to hold basically, it is amazing to me that no one has ever linked subclinical hemochromatosis to all of these iron loading diseases and recommended phlebotomies as prevention! Tens of thousands of neurologists all lamenting about this iron in the brain and nobody recommending to thwart the meltdown? Not much money in it.
My improvements continue to hold basically, it is amazing to me that no one has ever linked subclinical hemochromatosis to all of these iron loading diseases and recommended phlebotomies as prevention! Tens of thousands of neurologists all lamenting about this iron in the brain and nobody recommending to thwart the meltdown? Not much money in it.
http://tinyurl.com/ylcbl29
Doctors can detect excess amounts of iron through a combination of blood tests that measure iron, iron-binding capacity and transferrin, the protein that transports iron through the body. In some cases, magnetic resonance imaging scans and liver biopsies are also performed.
Some experts have suggested there would be a greater value in testing for iron disorders than for other conditions that have been traditionally sought in the routine blood tests that are performed in doctors' offices and hospital clinics.
http://www.nytimes.com/1999/10/26/healt ... -iron.html
VITAL SIGNS: RISKS AND REMEDIES
VITAL SIGNS: RISKS AND REMEDIES; A Gene, a Threat and a Buildup of Iron
By ERIC NAGOURNEY
Published: October 26, 1999
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As many as 1 in 10 people may be at increased risk of heart attack or stroke simply because they carry a gene that can lead to a serious metabolic disorder, even if they are in good health, recent studies suggest.
In the past, the carriers of the gene for the disorder, known as hemochromatosis, were not shown to be at any special health risk.
Carriers have one copy of the mutated gene associated with the disease, while sufferers of hemochromatosis inherit one mutated gene from each parent.
People with the disease absorb too much iron and often sustain serious injury to the liver, pancreas and other organs.
To reduce iron buildup, sufferers of the disease regularly have blood drained from their bodies, sometimes as often as once a week.
(The condition has received added attention recently as Federal health officials consider whether to allow that blood to be used to help the nation's dwindling blood supply; at the moment, it is simply thrown away.)
Although they have been spared the burdens of hemochromatosis, carriers have slightly elevated levels of iron in their blood, and some researchers have theorized that the added iron could pose a risk of coronary disease.
Two studies published in a recent issue of Circulation: Journal the American Heart Association, have now found evidence to support that theory.
That could raise some broad health questions, including whether the carriers -- who can get a diagnosis only with a genetic test -- should start having their blood drawn to deplete the iron buildup, said Dr. Jerome L. Sullivan of the University of Florida at Gainesville, who wrote an editorial accompanying the studies.
''It suggests a new risk factor in a fairly sizable chunk of the population,'' Dr. Sullivan said in an interview.
While I admire Ashton Embry's work on diet/MS I have a strong disagreement with his answer to me concerning genetic hemochromatosis and MS: I believe the majority of us have subclinical hemochromatosis...
Marilyn,
Most people with MS do not carry the hemochromatoisis gene and most definitely do not have hemochromatosis. A Pubmed search will conform this. There may be a a higher % of persons with MS with hemochromatosis then in the general population but this is not a big deal.
They have done many genetic studies in MS and have found that many genes are involved and none is dominant, that is, all contribute a small amount. The one consistent one is an autoimmune gene which is part of the HLA DR2 family. They have shown that MS, like most autoimmune disease is HLA restricted.
There is no doubt that northern Europeans are more genetically susceptible than other people. Regardless, environmental factors decide the issue as shown by many epidemiological studies. The occurrence of CCSVI as part of MS is an important one and how this fits in regarding environment and genes is not known. The bottom line is adequate vitamin D will prevent MS in most cases and I would
bet relief of CCSVI plus a good diet will halt MS if treated soon after diagnosis.
I am sorry to hear you have PPMS and to me diet and relief of CCSVI hold the best options. I refer you to the Terry Wahls video on our site (Information/Presentations). She has stopped SPMS with major nutriitonal changes.
All the best,
Ashton
No virus found
Marilyn,
Most people with MS do not carry the hemochromatoisis gene and most definitely do not have hemochromatosis. A Pubmed search will conform this. There may be a a higher % of persons with MS with hemochromatosis then in the general population but this is not a big deal.
They have done many genetic studies in MS and have found that many genes are involved and none is dominant, that is, all contribute a small amount. The one consistent one is an autoimmune gene which is part of the HLA DR2 family. They have shown that MS, like most autoimmune disease is HLA restricted.
There is no doubt that northern Europeans are more genetically susceptible than other people. Regardless, environmental factors decide the issue as shown by many epidemiological studies. The occurrence of CCSVI as part of MS is an important one and how this fits in regarding environment and genes is not known. The bottom line is adequate vitamin D will prevent MS in most cases and I would
bet relief of CCSVI plus a good diet will halt MS if treated soon after diagnosis.
I am sorry to hear you have PPMS and to me diet and relief of CCSVI hold the best options. I refer you to the Terry Wahls video on our site (Information/Presentations). She has stopped SPMS with major nutriitonal changes.
All the best,
Ashton
No virus found
From Zamboni himself:
http://jrsm.rsmjournals.com/cgi/content/full/99/11/589
Iron-laden macrophages carrying the HFE mutation display increased iron export, increasing the risk of generation of free iron and free radicals, possibly extending tissue lesions.5,6 A study from Australia29 suggests that C282Y-HFE mutation is increased in MS cases of North Western European origin and supports further investigations into the role of iron metabolism in the severity of MS.
Katie-I am looking forward to my next phlebotomy on Tuesday. I expect further improvements with that removal of 225 mg of iron! We do not load iron at the same rate as those with full-blown hemochromatosis, so fewer phlebotomies would be needed. We may only have about an extra three or 4 g of iron who knows... even after decades, but it would be enough to screw up a lot of organ function.
I know that preventative phlebotomies would work, for the simple reason that they know that coffee drinkers get us Parkinson's... well coffee slows the absorption of iron, therefore, ergo!, the simple reduction of iron will prevent iron loading disease like MS, Parkinson's, Alzheimer's, ALS, Huntington's if we can identify the iron loaders with iron panels. I know why it works, not just that it does work!
I know that preventative phlebotomies would work, for the simple reason that they know that coffee drinkers get us Parkinson's... well coffee slows the absorption of iron, therefore, ergo!, the simple reduction of iron will prevent iron loading disease like MS, Parkinson's, Alzheimer's, ALS, Huntington's if we can identify the iron loaders with iron panels. I know why it works, not just that it does work!
M, I can hardly wait for your next phleb post. I have never beleived in this need for the medico to have to have 'proof'. it only makes it clear that we are being used as lab rats..they did bloodletting centuries ago as treatment 'without their Godless tests' Mine will not be in for 6 to 8 weeks. What more damage must I endure for their damned paper proof? I desperately need a way of getting some blood taken. I emailed the lab at children's hosp. with my concerns...why so long? Haven't got a reply yet.
Katie-more than some others with clearer iron metabolism results, I think you are going to have a hard time because of the normal saturation rate. I hope not but you are going to have to be prepared for a fight I think. I fully expect with your iron TIBC for you to come back with HH genetics, but your ferritin is going to make for some problems because it is not very high. I don't know whether we own our own blood, let's I would be very cautious/afraid of self treatment simply because I don't know enough about the interaction between hemoglobin and ferritin and stored iron etc.
I had absolutely no adverse reaction to the Plebe, I can't even say for sure that my shoulders reacted because I recently got a used standing frame, and I find it put a lot of pressure on my shoulders cleanse standing there so I don't know if that was the source of extra pain.
I had absolutely no adverse reaction to the Plebe, I can't even say for sure that my shoulders reacted because I recently got a used standing frame, and I find it put a lot of pressure on my shoulders cleanse standing there so I don't know if that was the source of extra pain.