Anybody going to chelate the iron or attempt to?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby djlikwidsky » Thu Jan 14, 2010 5:20 am

In necropsy (of MS types), the iron deposits are found in the brain, not in the veins.

Yes, that's what I have uncovered in my reading as well. The iron deposits gather in the brain (in the case of CCSVI / MS type) and cause the damage which results in the symptoms.

Chelation therapy is something that my wife's doctor suggested we try before looking further into the treatments that Dr. Zamboni and company are utilizing.

Has anyone gotten noticeably improved results from the chelation therapy with regards to CCSVI? Thanks so much!

Blessings,
Christian
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Postby shye » Thu Jan 14, 2010 3:11 pm

djlikwidsky,
I will be posting my experiences wth chelation (sodium EDTA) in the thread "chelation" under the CCSVI topic. Should be able to finally start next week, will post every few weeks, or whenever get results from the frequent tests to be done.
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Postby Sawdoggie » Thu Jan 14, 2010 6:07 pm

I found the following abstract on PubMed. It is interesting in that it proposes that ferritin could be a marker for MS activity. What I find really interesting is that I have been diagnosed with HH for the past 12 years and MS going on 9 months or so. Even though genetically I am predisposed to HH, I am wondering if my ferritin levels are more related to MS activity as mine just crashed from 600 to around 20 in three months after giving 6 units of blood in that time to reduce it. In theory, 6 units should have dropped it at most 300 ng/ml. I am wondering as I had my ferritin checked in September (when it was around 600) and had an MRI in December which showed a new (compared to last April) but nonenhancing leision (and none of its friends were enhancing either) if that may have been active shortly before or during when my ferritin was checked. That could have caused an abnormally high ferritin level and in December when it was checked again, it was lower due to the phlebotomy, but also due to no active inflamation. Just thoughts...

Mult Scler. 2005 Jun;11(3):272-5.

Serum ferritin, transferrin and soluble transferrin receptor levels in multiple sclerosis patients.
Sfagos C, Makis AC, Chaidos A, Hatzimichael EC, Dalamaga A, Kosma K, Bourantas KL.

Neurological Clinic, Eginition Hospital, University of Athens, Athens, Greece.

Over the last few years, increased evidence has supported the role of iron dysregulation in the pathogenesis of multiple sclerosis (MS), as iron is essential for myelin formation and oxidative phosphorylation. We studied indices of iron metabolism, such as serum iron, ferritin, transferrin and soluble transferrin receptor (sTFR) levels in 27 MS patients. Seven patients had chronic progressive active disease (CP-A), six had chronic progressive stable (CP-S), ten had relapsing remitting active (RR-A) and four had relapsing-remitting stable (RR-S) disease. sTFR levels were found to be significantly higher in CP-A (P = 0.021) and RR-A (P < 0.004) patients than in controls. sTFR levels were also elevated in CP-S patients but did not reach significance (P = 0.064). sTFR values in RR-S patients were comparable to those found in controls (P = 0.31). Ferritin levels were significantly elevated only in CP-A patients (P < 0.002). Patients of the CP group had significantly higher ferritin values than the RR patients (P < 0.004). Haemoglobin values as well as iron and transferrin levels were within normal limits in all patients. In conclusion, the increased serum sTFR and ferritin levels in nonanaemic MS patients with active disease reflect the increased iron turnover. The mild elevation of sTFR levels in CP-S patients may indicate active inflammation with ongoing oxidative damage that is not detectable by history or examination.

PMID: 15957506 [PubMed - indexed for MEDLINE
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Postby mangio » Sat Jan 16, 2010 11:23 am

Sawdoggie,
I read that paper a couple of years ago and thought it was really
telling of something. I was researching Ferrinopathies at the time because
I have Restless Legg Syndrome and it is thought to be a iron storage
disorder.

Greek people apparently suffer Restless Legg Syndrome in very high
percentages similar to parkinson patients and kidney
dialysis patient groups - some say maybe as
high as 20pc. This lead me to wonder if MS patients had this as well.

Whenever I meet people with MS now I always ask if they
have this condition and almost all say YES! Maybe just
a coincidence or could it be related to the iron story.
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Postby Bethr » Sat Jan 16, 2010 10:03 pm

When I first started to be really affected a couple of years ago, I was presenting with severe fatigue and sleeping during the daytime and aching joints in my knees and hips. The only thing to show up in my blood tests were high Tsat 62% and highish ferritin 175.
Within a month I had my first and only episode. I lost the use of my right hand and had one lesion show up on the MRI (I officially don't have MS as I haven't had "multiple" events, but as my sister has it too he said that was what it would be). I was also sent for an EEG and it showed I had some independent focal changes in the anterior temporal regions on both sides indicating Epilepsy. The Neurologist pushed it aside, saying I must have been asleep (I wasn't), and no further testing was done.

Transferrin Saturation (not ferritin)in Epileptics is quite often high and they believe there is a link to iron overload. But I've never had any sign of epilepsy other than on the EEG.

This all happened over one month while my iron was high, especially the Tsat. It's a bit lower now but still in the higher ranges, especially the Tsat 51%. I haven't had any further events, just the fatigue and strange daytime sleeping.

I was then told I had one H282Y/? gene.

I've basically slept every day for 2+ years, barring when I menstruate. So I bit the bullet last week and gave blood. 500mls.
I haven't had a sleeping event since then, not once and I have heaps of energy. It's been quite miraculous. I feel light on my feet and I've basically been busy around home and feeling fine. I don't know how long this is going to last, but it's great.

This is a huge step forward for me. I do feel a little strange, short sharp pains in random areas of my head sometimes, but they are quite tolerable. My stiff knees and hips feel quite fluid now, just a little tinge in one hip. My back is aching now. I have restless legs, and a strange feeling in my chest, almost electric or trembling, but again tolerable, I think I used to feel a lot like this anyway, kind of hyperactive.

I'm waiting for an appointment with a haemotologist now.

My doctor denies I have any iron overload problem :roll:
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Postby CureOrBust » Sun Jan 17, 2010 3:52 am

I have to admit, I have not been following this chelation thread, sop please forgive me if these links have been posted here, or in any related discussion.

Use of desferrioxamine in the treatment of aceruloplasminemia(ie not MS)
Treatment for 10 months with the iron chelator desferrioxamine decreased brain iron stores, prevented progression of the neurological symptoms, and reduced plasma lipid peroxidation. These data suggest that early treatment with this chelator may be useful in such patients to diminish central nervous system iron accumulation and to prevent or ameliorate neurological symptoms associated with neurodegeneration.
http://www3.interscience.wiley.com/journal/109681371/abstract
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Re: Don't mix CCSVI and Iron Chelation

Postby Vhoenecke » Sun Jan 17, 2010 9:05 am

Johnson wrote:
MarkW wrote:After many years of reading around MS, with a health professional hat on, my advice is not to mix CCSVI and Iron Chelation. After CCSVI treatment (say 3-6 months later) there are many therapeutic options but doing both together is not predictable.

MarkW


I would agree with that sentiment. It seems to me that chelating iron, without proper drainage from the brain, could be "dangerous", or at the least, exacerbating.

Of carts and horses...


Hi I am new to this area, I have been spending time in Incline Bed Therapy. This is a way to drain the iron from the brain by tilting you bed. Andrew Fletcher has spent a lot of time and studies in this area. What a difference it made for me. I was then thinking I should get this iron out. I though I have a juicer so I researched chelating heavy metals with food. I started juicing with Cilantro. I noticed changes, I wasn't feeling as spry but seemed to sleep heavier. I wonder if you have to feel worse to feel better. Maybe it was the iron being chelated that was making me feel not as well. Headaches, etc. Take a look at Incline Bed Therapy, it sure made a difference for me. :D
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Postby Bethr » Sun Jan 17, 2010 12:52 pm

Try giving some blood at a blood bank 8) . It has worked for me like a magic bullet!!!!!!!!!!!! Wish I knew how long it will last. I'll keep updating on progress. I'm on my fifth day and still no fatigue whatsoever and no daytime sleeping. I feel like I'm in my 20's again.
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Postby Vhoenecke » Sun Jan 17, 2010 1:04 pm

You know, my dad had RRMS for years and he gave blood as he was a common type. He gave for 35 years to the red cross. He did seem to go downhill when he stopped giving blood. He was also on a drug study which wasn't good either. The results of the study were that don't give the drug to RRMS people as it can change them to PPMS. He did change to PPMS and was dead in 5 years. Oh my, what a sad thing.
I will definitely give blood, thanks for the advice.
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Postby LR1234 » Sun Jan 17, 2010 1:11 pm

I am so sorry to hear of what happened to your dad Vhoenecke.
Do you know which drug they had given him?
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Postby Bethr » Sun Jan 17, 2010 1:31 pm

My sister has had MS for over 20 years. She always donated blood, but gave up when she was diagnosed with MS, as she thought they wouldn't want her sick blood. She got progressively worse for a number of years. She tried all sorts of therapy and diets to help her. Intravenous Vitamin C (increases iron uptake 8O ), she even ate liver and stuff for a while. She did not get better.

In the past few months in her 50's she out of the blue resumed her menstrual periods, she had lost them 15-20 years ago and she's never felt better.

The severity of my symptoms always followed my menstrual period, I've known that for a long time. As soon as I bled I improved markedly for a week or so. In the past I would have put it down to the label "Pre-Menstrual Syndrome". But what is it really?
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Postby shye » Sun Jan 17, 2010 2:41 pm

Wow Bethr-
sounds like you are on to a cure for yourself! Amazing story--
sending light that it continues to stay so good for you...
keep us posted, is fascinating


(I am super fatigued a lot of the time, but don't seem to have an iron problem--so different mechanisms for so many of us)
Last edited by shye on Sun Jan 17, 2010 2:53 pm, edited 1 time in total.
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Postby shye » Sun Jan 17, 2010 2:49 pm

Vhoenecke-
I started the Inclined bed therapy about 1 1/2 months ago, but started some other things also, so a little hard to differentiate where the improvement is actually from--
definitely more feeling in feet and hands (and also now know how LITTLE feeling i had had)--color now in feet--wake up without all the post nasal drip used to have, sleep better, rarely need to get up to urinate during the night now..(I know, need to post this on the Inclined Bed Thread, just have been too busy)
But my question to you--did i miss something somewhere re: iron and inclined bed therapy??? I don't recall it ever being mentioned that it chelates iron from the brain, and I can't imagine how it could.

Cilantro does have the potential to chelate iron, but would have to take a lot a think, and would be a super slow process. I have also been using cilantro, but just chopped raw over certain vegetables. (it is great with yam and mayonaise as a cold salad).
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Postby Vhoenecke » Sun Jan 17, 2010 3:22 pm

I don't know what drug they gave my dad but I am going to ask my mom. My dad was lucky that he wasn't PPMS when he was young and so was I. We were able to have a dad at home and he provided for us growing up.
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Postby AndrewKFletcher » Sun Jan 17, 2010 3:33 pm

shye

Please post your experience on the Inclined Thread, it is important for people to know, whether you think it's the bed or not.

To determine which is helping, put the bed flat for at least 7 days.

Thanks

Andrew
Find us on Facebook.com/InclinedBedTherapy
IBT website: http://inclinedbedtherapy.com
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