Phlebotomy anyone?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Merlyn
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Post by Merlyn »

http://www.ncbi.nlm.nih.gov/pubmed/10870847



Relation between HFE mutations and mild iron-overload expression.
Mura C, Le Gac G, Raguénes O, Mercier AY, Le Guen A, Férec C.

Centre de Biogénétique, ETSBO, CHU, UBO, Brest, France. Catherine.Mura@univ-brest.fr

The identification of the HFE gene involved in hemochromatosis allows genetic tests based on mutation analysis to be performed. However, discrepancies in the correlation between HFE genotypes and iron-loading status have arisen. We investigated 708 patients with various signs or symptoms suggesting a putative iron overload that, nevertheless, did not reach the current criteria for hemochromatosis diagnosis. Most of the patients (91.4%) included in our study displayed one of three classical iron marker values above the threshold defined for iron overloading. HFE mutation analysis allowed us to identify 45.7% of carrier chromosomes in the studied group of patients that showed higher frequencies of HFE mutations compared with controls. In addition, the frequencies of compound C282Y/H63D heterozygous, H63D/H63D homozygous, and C282Y heterozygous genotypes were higher than those in HH probands and controls; they accounted for 16, 5.6, and 22.5% of the patients, respectively. All genotypic groups had a significantly higher value of serum ferritin concentration compared to the normal value; only the C282Y homozygotes and compound heterozygotes with H63D had a transferrin saturation significantly higher than the normal value. On the whole the H63D homozygous and compound heterozygous patients constitute an intermediate phenotypic group between HH and controls. Some of them may reach the critical overloading defined for HH diagnosis along with a potential risk of developing complications, whereas others only show a partial phenotypic expression.

PMID: 10870847 [PubMed - indexed for MEDLINE]
Sounds like me, but again I don't see anybody recommending phlebotomy! Why not?
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Merlyn
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Post by Merlyn »

Lipid peroxidation has always been a hallmark of MS... I tested high off the scale for this back in the year 2000 and started taking vitamin E., but I never noticed any improvement from that... I don't think you would get anywhere until the iron levels get down...
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Post by Cece »

Merlyn wrote:KaWhat Abnormal Results Mean
TIBC is usually higher-than-normal when the body's iron stores are low. Higher-than-normal TIBC may mean:

Iron deficiency anemia
Pregnancy (late)
So pregnancy, especially the latter half, has a calming effect on MS...and is one of the few times when the body's iron stores are low.
"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
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Merlyn
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Post by Merlyn »

http://www.webmd.com/brain/brain-lesion ... treatments

Alzheimer's disease and other dementias: Alzheimer's disease and some types of dementia are another group of brain lesions. In these lesions, nerve cells die, leaving behind damaged areas of the brain.Gradually, brain function in those areas decreases.
http://iospress.metapress.com/content/8ayv8j3x2q7fhrg0/



An imbalance in brain iron status has been established in Alzheimer's Disease (AD). This iron imbalance can impact plaque formation, amyloid processing, and expression of and response to inflammatory agents. In a more general sense, a deregulation of iron homeostasis underlies the generation of reactive oxygen species leading to oxidative damage. Thus, loss of iron homeostasis can be central to the pathogenic events in AD. Recently a number of studies have begun to investigate the frequency of mutations in the HFE gene in AD. Mutations in the HFE gene occur more frequently in Caucasians than any other mutation. The two most common mutations of HFE are the C282Y (2% of the total population) and the H63D (9%. Mutations in this gene are associated with loss of iron homeostasis, alterations in inflammatory responses and in its most severe form, a clinical disorder known as Hemochromatosis. The C282Y mutation is more frequently associated with Hemochromatosis and the frequency of the H63D mutation is receiving increasing attention in neurodegenerative disorders. This review summarizes the data on HFE mutations in neurodegenerative disorders and what is known about HFE in the brain and the cell biology underlying the HFE mutation.
This is why I am suggesting that by keeping iron levels down in the body close to anemia, we might have a very natural treatment read phlebotomy for all of these conditions that have iron overloading... MS, Parkinson's, Alzheimer's... would that not be wonderful! So simple!

I was talking to my mother-in-law who is 86, and I tell you, even she who is very squeamish would do phlebotomy three or four or five times a year to prevent Alzheimer's!
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Bethr
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Post by Bethr »

I've just dragged out my blood test results from 10 years ago, seven months pregnant.

Serum Iron 25.4 (range 11-26)
TIBC 68 (range 42-69)
Ferritin 133 (range 15-160)
% iron saturation 37% (range 13-45)

Terrible pregnancy, I wasn't putting on weight and was eating constantly. It ended with a very starved baby, normal length but only 4lbs. Placenta failed. My first baby was 9lbs! She's great and it never seemed to affect her. She's quite petite.
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Merlyn
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Post by Merlyn »

Barbara-what you are describing could be a zinc deficiency... when you don't have enough zinc, sweat becomes very smelly due to proliferation of bacteria... you might require more like 30 mg a day... personally, I have found that the best thing on the market for me was a product by Radiant Health called Krebs zinc... PhytoPharmica used to make Krebs zinc, but I don't think they do anymore.
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jak7ham9
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zinc for stink

Post by jak7ham9 »

thanks merlyn i also read that high ironlevels increase the level of bacteria as bacteria needs iron to flourish . i take zinc with my magnesium and calcium but maybe its not enough.thanks
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katie45
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Post by katie45 »

thx so much M for asking about this etc...trust me to have some unheardof thing......went for genenetic bl test today...it may show something...do you think the ip6 could have done it's thing in 6 wks? enough to lower the sat? Bill sardi says 3 months to lower iron stores...my keyboard has gone again.....Do you think i may not have HH?
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Bethr
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Post by Bethr »

Concerning the IP-6 (inositol?). What is the best type to buy. I've found some in NZ, but it is mixed with other things in a multi type pill. Any recommendations?

My poor sister got turned down for her phlebotomy yesterday :cry:
She's not a happy camper. So there are rules about MS and blood donations here too. They let me through because I don't have "multiple" sclerosis, just the one lesion. So it's back to the drawing board to get her ferritin down (around 160), her Tsat is OK for the moment at 23%, but she has been in remission for a couple of years and even has her periods back. She still gets fatigue though and sleeps quite a bit during the day.
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katie45
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Post by katie45 »

bethrI use immune support formula cf ip6 & inositol from loc al health food store 616 mg
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shye
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Post by shye »

Bethr'
thanks for your earlier reply.

Re: IP6 Bill Sardi recommends the IP6 manufactured by Tsuno Food and Rice Co in Japan--In the States, Jarrow uses this (Sardi has recommended this product). The Jarrow IP6 includes: IP6 500mg
Calcium 85 mg Magnesium 30 Mg (ca-mg inositol hexaphosphate).
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shye
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Post by shye »

Re: iron and chelation

I started EDTA IV chelation 3 weeks ago--
my NON_FASTING iron prior to chelation:
total 82 (40-160)
TIBC 244 L (250-450)
trans sat 34 (15-50)
Ferritin 103 (20-288)

after 2 chelations, and FASTING:
Total 138
TIBC 301
Trans Sat 46
Ferritin 79

Fasting iron should be a bit lower I think than non-fasting, because the reason you take it fasting is that iron in food is absorbed quickly, so if you ate breakfast that included iron, it would be reflected immediately in the blood drawn.
So, I had thought my fasting wd by lower, yet is higher, except for Ferritin

So, could the chelation be drawing the iron into blood stream?? So with numerous chelations, it could eventually be taken out of body thru kidneys?
I am trying to research this, so far no ans.
I just purchased IP-6, and will use that as well as the weekly EDTA IV--on basis that if the iron is being drawn into bloodstream, the IP-6 will chelate that free iron and take it out of the body.
Will get the iron tested every month (if insurance allows lol), and post the results. Should be interesting--- hopefully, will decrease the iron.
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Bethr
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Post by Bethr »

Your Tsat has gone up! It's interesting what happens when you change the balance. The dangerous iron is the Non-Transferrin Iron. I wonder if that kicks in when the Tsat gets high? I kind of figured it did.

Hopefully we can find the IP-6 in NZ and get my sister onto that. Her ferritin is close to 160, but Tsat normal at 23%.
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Trent
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High iron

Post by Trent »

Hi,
I'm new here, though I've been watching for a while now.
I'm a 68 yr/o UK male. I have had PPMS with symptoms since 1970's. I have used a wheelchair now for about 5 years.
I have been following the Klenner vitamin protocol for about 18 months, ever since an MS nurse said to me 'Hope for the best; prepare for the worst.' A contact had given me aa link to the site detailing Klenner's method: www.mymultiplesclerosis.gr
I had some small improvements, but Dale Humphreys who mentors through the site was puzzled that I was not making the improvements he expected to see. When I queried this he said that failure to improve was rare, but that it usually indicated a condition other than, or, as well as MS. When I asked 'Such as?', one of the conditions he mentioned was Haemachromotosis. When I googled this I could not believe what I was reading. It was my mother to a 'T' She had the bronze skin, arthritic knuckles, had had thyroid problems as a teenager and had died of a stroke, early at 68.
Armed with this I went to my doctor who sent me for a blood test.

The results were as follows:

Serum iron tests
Serum iron level Out of range 55.9 umol/l (Normal 5.5 - 25.8)
Saturation iron binding capacity 61 umol/l (45 - 70)
Transferrin saturation index Out of range 91% (20 - 55)
Serum transferrin 2.45g/l (1.63 - 3.44)

This must have caused some concern at the clinic working on the sample as the hospital phoned me up at 9-15pm the same night wanting me to go there immediately. Was I feeling ill? I was asked. Well no worse than usual. I got them to agree to my calling my doctor the next day.

If you can believe this, when I saw the haematologist about it he sais 'Oh, it's an anomaly'!!!!! Yes? I don't think so!

So my blood was sent for genetic testing, and, yes, you guessed, I have one mutated gene. My wife has an uncle who died from HH so our sons are having the checks too.

I had a further blood test before Christmas:

Serum iron was still out of range, but lower, at 32.7 umol/l
Saturation iron binding capacity 62 umol/l
Transferrin saturation index 53% (Top end)
Serum transferrin 2.48 g/l

So next Tuesday I'm seeing my doctor to try to get him to sencd me for a series of phlebotomies.

He's been quite positive so far about me trying the Klenner - 'Isn't the internet wonderful? If I were you I'd do exactly the same. I've no problem with you trying a vitamin scheme.'

Anything that comes to mind to ask etc?
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Post by LR1234 »

Wow Trent! Hopefully getting your iron levels sorted will help your situation.
So Dale had a good point! Has the Klenner protocol been working at all for you? do you inject the B1/B3??

I might start a thread over in the natural section as I am interesting in hearing more people's experience of this protocol.
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