i take the first step

It is so crazy that you should eat lots of yummy cake! 

As for the other results: you should also post the normal ranges that your hospital use. Otherwise it would be difficult for use to give a judgement.

Best wishes from your neighbour 

Dore

Panos ,

Your ferritin is going down gradually and its a good news .This is a pre transfusion hb or post transfusion hb ?

Zaini.

thx dore and zaini

the resultsn are before tx of couse....

andy and the rest...

did u have ever heard of an antioxidant

called      Idebenone

its not to get in europe

but in the states....

must be good

The Dutchies have this stuff already: http://www.supersmart.com/nl--Specifieke-producten--Idebenone-45-mg--0259
http://www.vitavie.nl/content.php/nl/135/productinformatie?ProductID=14

English:
http://www.smart-drugs.net/info-idebenone.htm

I have searched in medical database, but could not find any article. So I got only wikipedia (http://www.myhq.com/public/a/l/alper/) and it's own website (http://www.myhq.com/public/a/l/alper/)

Dore

Panos,

As far as i am able to understand,its a synthetic replacement of CO-Q 10. Which is an antioxidant.

From http://www.antiaging-systems.com/a2z/idebenone.htm

Idebenone is a synthetic variant of one of life's most essential biochemicals, Coenzyme Q10 (Co Q10). Co Q10 is an important antioxidant component of the lipid (fatty) membranes that surround all cells, as well as the lipid membranes surrounding the various organelles ("little organs"), such as mitochondria and microsomes, inside cells.

Zaini.

Idebenone is related to CoQ10 and is a good antioxidant with special value to the heart.

http://www.antiaging-systems.com/a2z/idebenone.htm

Idebenone is one of the safest and most potent antioxidants known to man
Idebenone is a cerebral stimulant that increases brain energy levels and has a rejuvenating effect on the whole body

Idebenone is a synthetic variant of one of life's most essential biochemicals, Coenzyme Q10 (Co Q10). Co Q10 is an important antioxidant component of the lipid (fatty) membranes that surround all cells, as well as the lipid membranes surrounding the various organelles ("little organs"), such as mitochondria and microsomes, inside cells.

Co Q10 is also an important member of the Electron Transport Chain (ETC) within mitochondria, which are the ‘power plants’ of the cell. Most of the oxygen we breathe is used inside the electron transport chain to produce much of the ATP bioenergy that powers virtually every activity of our cells and bodies.

When blood flow is seriously reduced to any part of the body - as in a heart attack, stroke, trauma, shock or chronic poor blood circulation - cellular/ mitochondrial oxygen (O2) levels quickly drop in the affected region. Free radicals quickly damage cell/organelle structure and function, as well as rapidly halt ATP energy generation by the electron transport chain. Brain and spinal cord cells are especially prone to such damage, and may be irreparably damaged or even destroyed within minutes.

Studies have shown that in such circumstances Idebenone prevents the free radical damage and maintains relatively normal cell ATP levels. In short, while Idebenone can effectively substitute for Co Q10's positive and life essential functions, it doesn't have Co Q10's free radical producing feature which occurs under hypoxic (low oxygen) conditions.

Idebenone's potential benefits fall into five categories:

1. Anti-aging
2. Energy enhancement
3. Cognition enhancement
4. Organ protector
5. Protector against excitatory amino acid neurotoxicity


Anti-aging benefits

The mitochondrial power plants produce over 90% of all cellular ATP bioenergy. They are also generally the richest sites in Co Q10 (or Idebenone). Mitochondrial DNA (mtDNA) allows mitochondria to reproduce themselves.

Over the course of a lifetime our mtDNA becomes ever more damaged, and the mitochondria produced become ever more ineffective in their energy generation.

Studies comparing heart tissue from young people with that from elderly people have shown almost no significant mitochondrial dysfunction in young hearts, with significant, often severe mitochondrial dysfunction in elderly hearts. The cells that are most susceptible to mitochondrial energy depletion with advancing age are the brain, skeletal muscle and heart muscle cells.

Idebenone, therefore, provides an anti-aging effect here in several ways. Unlike Co Q10, even under the low oxygen conditions that may occur periodically over a lifetime, Idebenone will serve as a powerful mitochondrial free radical quencher, lessening the ever-increasing mtDNA damage that occurs with age. Idebenone will work even better than Co Q10 within the electron transport chain to keep energy production high, even under hypoxic conditions. This is especially critical to brain and heart cells that may be rapidly damaged during low ATP production episodes that occur due to poor tissue oxygenation.

A variety of studies using brain cells (animal and human) have shown Idebenone's ability to enhance brain structure and function. These tests have demonstrated that Idebenone can enhance serotonin production, even under far less than optimal conditions, such as in patients with cerebrovascular dementia.

Dosage:
Take 30mg two or three times daily.

Side effects:
Possible gastrointestinal disturbances, dizziness, headaches, anxiety and uneasiness and sleep alterations.

The section in bold shows how this supplement is relevant to thals, who live their lives in a state of low oxygen.

Andy,

Would Idebenone be something that I could recommend to my friend - as a supplement that she can give to her son, who has epilepsy?

Sharmin

Sharmin,

If your friend is taking anti-epileptic medicines it is advised to not use Idebenone, because it can interfere with the function of the drug.

http://www.thehealthierlife.co.uk/natural-remedies/alternative-therapies/co-enzyme-q10-more-powerful-vitamin-e-00342.html

Idebenone

    * Idebenone is up to 100 times more effective than vitamin E
    * It preserves the small, but very important, amounts of genetic material (DNA) found inside the mitochondria. Damage to this mitochondrial DNA is believed to be one of the primary causes of ageing.
    * It is best used together with co-enzyme Q10 for a much more potent action

Warning: Idebenone is best avoided by people who are taking anti-epileptic drugs. As it may interfere with the actions of the drugs and reduce their effectiveness. It is well tolerated with other prescription-only medication. Side effects are rare and mild (Pharmacopsychiatry 2002, 35(1):12-18). Examples are nausea and stomach upset.

The normal dose is 45 mg a day for general anti-ageing protection. For treatment of existing diseases the dose is increased to 45 mg or 90 mg three times a day. Because Idebenone stimulates the production of energy, it makes people 'buzz' with vitality and this may cause problems with sleeping. So, to avoid difficulty in sleeping, it is best to avoid taking it late in the evening or at night.

If your friend is not taking anti-epileptic meds, then it may be of some value to take Idebenone.

Andy,

My friend's son (12yrs old) is now and he has been off of medications since August 2008.  He hasn't had seizures since 2006.  There was some abnormality in his eeg this fall.  The docs think that he may outgrow epilepsy completely, have some reoccurance, and in rare cases it could become worse.  I hope that he outgrows it completely, and I believe that a proper diet and supplements can help him along.   The description of Idebenone, above sounded like it would be beneficial to him. 

Thanks again Andy,

Sharmin

here is a small update

unfortunately after my fe went down to 3200
i got an infect in my porth....
so i have to stop the IV desferal and i only
take the L1 (18 tabs)....
in that few weeks i got 6 units of blood (transfusion)
and my fe goes to 3500....
so i have to believe that 1 chelator only would not
bring the fe down....
not in my situation (2 units blood in 12-14 days)
i have to axept that only combie-therapie bring
the fe down....
since monday my porth have become infect-free
and i start again with both....
4 gr desferal and 9 gr L1....
lets see what happend....
                                    panos

Hi Panos,
its nothing to worry about , be faithful with chelation ,...
i want to mention here something,
1st my Fe decreased from
9650 to 3582
then 3582 to 2902
then went up back to 3613
then it came down again 3613 to 2330
then 2330 to 2060 ...
soo, i think fluctuation/variation in S.fe level is nothing to worry about .. as other forum memebr told me that infection could b a reason of hike in S.Fe .. soo dont worry abt it and keep chelating...
your S.fe is decreasing day-by-day and you're doing good, soo please keep it up ... Way to go buddy ... its a little long to get your S.Fe in normal range but you can , and its not imposible as few other member has controled their Iron level quite well... dont worry abt the hike and keep chelating , its my main message to you Panos .... Wish you all the best of luck and everything ..

Best Regards
Take Care
Umair

Panos, sorry to hear about the infection and definetly the combination therapy is the best in case of elevated ferritin levels. The most important thing is taking antioxidants to decrease the oxidative stress on the cells

Good luck

manal

hi manal
every morning one hour befor breakfast
i take 400 mg ip6,
1x kolostrum,
1xnigella softpill
and one l-carnitin-magnesium combi-pill......
the color of my skin change from grey-olive
to now fresh rose.....its amazing
                                              panos

Panos,

I am so happy to hear that.  When your skin (which is an organ) shows this kind of improvement, it is an indication that your internal organs must also be improving.  This is great!!

I wish you continued improvement and good health,

Sharmin

Panos,

I am so happy for you, my friend. I am sure the colostrum is also of benefit in helping to keep your immune system working well during the port infection.

The power of supplements is becoming more and more evident as we hear more reports like this from patients of all ages. Panos is an older patient and has been through many life threatening experiences. This shows that it doesn't matter what you've been through before and what your current health status is, or even how old you are. What matters is that you take control of your health and for thalassemics, taking supplements is something all can do to have a very positive effect on their health. I'm a firm believer in the power of supplements for all people but for thalassemics, the benefits are undeniable.

This group will continue to be a leader in this area and the cooperation of the members in trying various supplements has and will continue to be key in the development in our knowledge of what everyone can do to improve their health and enjoy better lives. When I first became involved with thal, the value of supplements was not well known and other than folic acid, zinc and vitamin E, there was very little being recommended to thals. Research has advanced since then and a better understanding is being created among those who treat thal, but I have to say, we are far ahead of most with our recommendations. This has been a true group effort and everyone who has taken part in advancing our understanding of what will help the health of thals deserves a big thanks and a round of applause.