Katie-so you are getting the test for hemochromatosis? Right on! It is very hard to wait for it, and it will be very interesting to see if you do carry it, because your iron panel is a little different... this genetic mutation may cause iron problems all over the map... my iron panel is actually one of the more easy to understand I think.
Quite frankly, I am hoping that you do carry the HH mutation, phlebotomy is a lot easier to deal with than celiac disease. I tried for years to eliminate gluten/wheat to no effect on progression... it just tortured me with deprivation!
Phlebotomy anyone?
I think I had a full panel...I have the wbc, rbc, hb, hct, mcv, mch, mchc, rdw, plt, neutrophils, lymphocytes, monocytes, eosinophils, basophils, sodium, postassium, chloride, carbon dioxide, anion gap, glucose, urea nitrogen, creatinine, estimated gfr, calcium, bilirubin, albumin, prtein, alkaline phoshpatase, alt, ast, vit d2, vit d3, tsh, and ferritin...sorry to be dim about this, it is new to me...I'll be going back to the doc in two weeks and will suggest testing for serum iron and tsat.Bethr wrote:Yes, you need tsat minimum. A full panel would be best.
"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
Just got off the phone... I have decided that I have to get the word out there that MS and hemochromatosis are related and is treatable! It is so simple! Run the proper iron panel, see if there is a metabolic abnormality, if there is, test for the HH mutation and figure out how phlebotomy schedule! I used to write occasionally for the Well Being Journal, one of the alternative medical magazines... I am going to write up An MS Detective Story... Scott is a wonderful man, very open to research... this is not a large magazine, circulation is about 5000, but I will give him copyright and he can spread the news... I am going to write the whole thing this weekend... I just feel incredibly compelled to get the word out there... maybe it's because I have studied heavy metals for 12 years, but I know I am right and we can prevent both Parkinson's and Alzheimer's when there is this genetic mutation involved... we can also prevent MS. I have never been so sure about anything.
http://www.wellbeingjournal.com/
http://www.wellbeingjournal.com/
Trent-this is a UK website, might pick up some hints on phlebotomy...
http://www.hemochromatosis.co.uk/tpph.html
http://www.hemochromatosis.co.uk/tpph.html
Okay, as far as I can figure out, there are about 13,000 neurologists in the United States, in Canada it is hard to find statistics, there seems to only be about 100 or so... but then you start to multiply this by all the different countries, like the United Kingdom, Germany etc. and I have a feeling we are looking at tens of thousands... so why in the world is all of this abnormal iron metabolism starting to come to light right now? I mean doesn't anybody else find it absolutely bizarre that this has never been delineated before??? What the hell were these people doing besides obsessing about brain lesions? I'm sorry, but do any of these people do any original research, and considering how they have implicated the genetic component to MS, why have they never looked at hemochromatosis? I am just totally discombobulated, I cannot get my head around it. I think there are a lot of high-paying jobs at risk by our findings! And I don't care, no one should have to suffer, no one should have to suffer with this spasticity and declining ability and loss of independence and all the other crap. I go to my Dr. on Tuesday, and I will be polite, but I will not leave until I have another authorization for another phlebotomy.
http://www.sciencedirect.com/science?_o ... 6620ee6f5b
12 June 2003. ; Available online 15 July 2003.
Abstract
Iron overload increases oxidative stress and may lead to neurodegenerative disease like Parkinson's disease (PD). We studied the role of mutations in the hemochromatosis gene HFE in PD and other parkinsonism (non-PD PS) in two population-based series. The first series consisted of 137 patients with PD and 47 with non-PD PS, and the second of 60 patients with PD and 25 with non-PD PS. In the first series, PD patients were significantly more often homozygous for the C282Y mutation than controls (P=0.03). Patients with non-PD PS in both series were more often carriers for the C282Y mutation than controls (P=0.009, P=0.006, respectively). Our data are hampered by small numbers, yet suggest that the C282Y mutation increases the risk of PD and non-PD PS. The rarity of this genotype requires a large series of patients to prove our hypothesis.
Author Keywords: Parkinson's disease; Parkinsonism; Hemochromatosis; HFE; Iron; Oxidative stress
You know it is a lot easier to prevent disease than to correct it after it's happened! Phlebotomy first!
Katie-I know where you are coming from. I read once that the Irish tend to die of cancer because they are reluctant to go to the doctor... culturally they are kind of programmed not to complain. (Sh*t happens because you deserve it). And I have been totally appalled for the last 10 years on people's attitudes towards MS... if you would only drink Goji juice, or Noni juice or click your heels three times, you would not be beset by this. And then I kept reading that there is a genetic component, but nobody could ever pinpoint what the genetic component might be. Well, it would appear that iron loading is genetic... I owe Marie Warder a great deal of gratitude. My improvements in spasticity continue to hold, and I am really really curious as to what improvements might result from a second phlebotomy... although I do have to get the calcium things sorted out, or I will have unbearably sore shoulders. But I do understand completely what you are saying... whenever I go to MS support groups, I realize just how hard I got hit by this... more than most people with MS, although the people of course that are totally debilitated don't go to the meetings. Like you, I was putting my husband through major emotional meltdowns. I was crying all the time, wondering when like my mother, I would end the misery. Please hang in there, I don't know how far we can reverse this, but the body does have an amazing ability to heal once the heavy metals are removed. I've seen that time and time again on the metalslist... once people figure out the root problem and get rid of it, the body magically recuperates. That is why I do the conference calls with Dr. Lyn, she is so upbeat about the ability to heal. I believe that heavy metals are a plague destroying health. Seems like we can add iron to the list of heavy metals that destroyed the CNS... good company with Mercury, lead, cadmium, gallium, barium, gadolinium, nickel, uranium, the list goes on. But at least we know how all that iron gets in there.
Bethr,
Thanks for your info - at last I feel that I'm moving in the right direction!
I know you have posted about the results of your phlebotomy, though I can't find it just now. Have you had more than one? Can I expect any results from the first? I hope my doctor will agree to send me, or all's lost!
Thanks for your info - at last I feel that I'm moving in the right direction!
I know you have posted about the results of your phlebotomy, though I can't find it just now. Have you had more than one? Can I expect any results from the first? I hope my doctor will agree to send me, or all's lost!
I know what you're saying M and know you're right...I've been 'clicking my heels'
for many years until I could no longer bring my heels together. lol I have never thought of myself as a victim...but there is something very wrong with a world
where drs. etc. actually work at keeping people in all states of agony for profit.
If we find a logical reason for these afflictions (like iron) they fight like hell against us finding out. Sick
for many years until I could no longer bring my heels together. lol I have never thought of myself as a victim...but there is something very wrong with a world
where drs. etc. actually work at keeping people in all states of agony for profit.
If we find a logical reason for these afflictions (like iron) they fight like hell against us finding out. Sick
Re iron and other minerals
Zinc is a big issue with immune diseases. Since MS has been treated by many drs as an immune problem, a lot of MSers take zinc since it it known to be an immune enhancer. But even in all the discussions here on thisisms re:zinc, it is not mentioned that if you take zinc you must take copper (ratio of 1copper to 8 zinc, or 1 to 10--) because too much zinc displaces copper. So, many seem to be taking zinc but no copper. But this is a great mistake for a number of reasons. In relationship to MS,
A DEFICIENCY OF COPPER CAUSES OUR BODY TO RETAIN EXCESS IRON. I have also read in one source I am not familiar with and am trying to verify, that copper is also necessary for the normal functioning of certain nerve cells (substantia nigra)--isn't that where they are finding the iron storage with MS ????? (or is that with Parkinson's)??? Either way, it is iron stored in the brain due to copper deficiency!
Yes, here is a quote(from 1988) that Cheerleader posted in "Lesions and SWI" thread:
So, recap: too much iron can block our absorption of copper, and too little copper makes us store too much iron. So with hemachromatosis, I would think copper supplements would be of utmost importance to stop this cycle. And for the rest of us, we might also need some copper, esp if taking zinc supplements.
Zinc is a big issue with immune diseases. Since MS has been treated by many drs as an immune problem, a lot of MSers take zinc since it it known to be an immune enhancer. But even in all the discussions here on thisisms re:zinc, it is not mentioned that if you take zinc you must take copper (ratio of 1copper to 8 zinc, or 1 to 10--) because too much zinc displaces copper. So, many seem to be taking zinc but no copper. But this is a great mistake for a number of reasons. In relationship to MS,
A DEFICIENCY OF COPPER CAUSES OUR BODY TO RETAIN EXCESS IRON. I have also read in one source I am not familiar with and am trying to verify, that copper is also necessary for the normal functioning of certain nerve cells (substantia nigra)--isn't that where they are finding the iron storage with MS ????? (or is that with Parkinson's)??? Either way, it is iron stored in the brain due to copper deficiency!
Yes, here is a quote(from 1988) that Cheerleader posted in "Lesions and SWI" thread:
Copper is also necessry for the elasticity of blood vessels--again, maybe copper deficiency involved in CCSVI development ????Abstract
Evidence of damage to cerebral vein walls was sought in 70 cases of multiple sclerosis. Seventy control cases were also examined. The multiple sclerosis cases showed venous intramural fibrinoid deposition (7%), recent haemorrhages (17%), old haemorrhages revealed by haemosiderin deposition (30%), thrombosis (6%) and thickened veins (19%). In all, 41% of all multiple sclerosis cases showed some evidence of vein damage. Occasional control cases showed haemosiderin deposition in the brain but, unlike the multiple sclerosis cases, these were diffuse and almost entirely related to coexistent cardiovascular or cerebrovascular disease. Haemosiderin deposition was common in the substantia nigra and other pigmented nuclei in all cases. It is concluded that the cerebral vein wall in multiple sclerosis is subject to chronic inflammatory damage, which promotes haemorrhage and increased permeability, and constitutes a form of vasculitis.
So, recap: too much iron can block our absorption of copper, and too little copper makes us store too much iron. So with hemachromatosis, I would think copper supplements would be of utmost importance to stop this cycle. And for the rest of us, we might also need some copper, esp if taking zinc supplements.
Just found this:
http://www.ncbi.nlm.nih.gov/pubmed/2723 ... olding=npg
The Substantia Nigra has the most copper of the brain (found this info elsewhere), and the copper here is necessary for mentation: So if low copper intake due to too much zinc (which displaces copper) or to too much iron, which does likewise--(or to too little copper, which makes us store too much iron) you would get the results similar to the 1988 study quoted above (which was re: MS, not Parkinson's)
So, I"m wondering if a sharp mineral imbalance could be one of the causes of MS (and Parkinson's, etc) deposition of iron--possibly copper deficiency being the culprit. (and too much Iron for those with hemachromatosis)
http://www.ncbi.nlm.nih.gov/pubmed/2723 ... olding=npg
It is re: Parkinson's but is the substantia nigra area, and note the abberations are increased iron, increased zinc, decreased copper.J Neurochem. 1989 Jun;52(6):1830-6.
Increased nigral iron content and alterations in other metal ions occurring in brain in Parkinson's disease.
Dexter DT, Wells FR, Lees AJ, Agid F, Agid Y, Jenner P, Marsden CD.
University Department of Neurology, Institute of Psychiatry, London, England, U.K.
Levels of iron, copper, zinc, manganese, and lead were measured by inductively coupled plasma spectroscopy in parkinsonian and age-matched control brain tissue. There was 31-35% increase in the total iron content of the parkinsonian substantia nigra when compared to control tissue. In contrast, in the globus pallidus total iron levels were decreased by 29% in Parkinson's disease. There was no change in the total iron levels in any other region of the parkinsonian brain. Total copper levels were reduced by 34-45% in the substantia nigra in Parkinson's disease; no difference was found in the other brain areas examined. Zinc levels were increased in substantia nigra in Parkinson's disease by 50-54%, and the zinc content of the caudate nucleus and lateral putamen was also raised by 18-35%. Levels of manganese and lead were unchanged in all areas of the parkinsonian brain studied when compared to control brains, except for a small decrease (20%) in manganese content of the medial putamen. Increased levels of total iron in the substantia nigra may cause the excessive formation of toxic oxygen radicals, leading to dopamine cell death.
The Substantia Nigra has the most copper of the brain (found this info elsewhere), and the copper here is necessary for mentation: So if low copper intake due to too much zinc (which displaces copper) or to too much iron, which does likewise--(or to too little copper, which makes us store too much iron) you would get the results similar to the 1988 study quoted above (which was re: MS, not Parkinson's)
So, I"m wondering if a sharp mineral imbalance could be one of the causes of MS (and Parkinson's, etc) deposition of iron--possibly copper deficiency being the culprit. (and too much Iron for those with hemachromatosis)
Last edited by shye on Sat Feb 20, 2010 5:47 am, edited 1 time in total.