i take the first step

i start with iv-desferal via porth for 7 days... and then 7 days break.....

after some months i take deferiprone too....

this helpes a lot, but after some months i become overwigth...

because of the ferriprox, (40 pounds more)....

i stop the ferriprox but with the desferal only thinks dont go

thinks dont go as fast as i wont them....

so i start exjade and hold the desferal by.....

after some weeks i become a raise in the kreatinin and stop it.....

as i lost a lot of pounds i restart the ferriprox.....


bu teverytime again i become the wightproblem under ferriprox...

so i take all 3 but in the same time only 2 of them.
      panos

after really bad bad years (spleen enlarged over 35cm,billirubin between 5-7)

very short tranx-intervalls.....my ferritin becomes about   16.900

this was the time everythink broke down.....

fast hearthbeats, papilations, polmonary hypertension, livercyrosis, diabetis starts

immunsystem broke down (become a really heavy herpes zoster in the face)

Panos

Comparing between your situation in the past and now, i must admit that you are real inspiration.  I remember that when i first joined this forum, the posts that your sister was posting at that time were the first that i had seen. At that time you were in the hospital and she was updating about your case and i remember that you were in a serious condition

Actually in a very short time you were really able to reverse the whole situation with a strong will. I really admire your hard work, keep it up

Manal

Panos, I share Manal's opinion!

 

PS do you plan to attend that conference in Berlin too?

Panos has lowered his ferritin greatly because he has used this method. Being that he is a well experienced thal, I do expect that he does pay close attention to the doses and any reactions in his body. I also expect that as his iron load becomes under control, that Panos will once again revise his chelation routines. I've known Panos for some years now and four years ago we tried out the primitive chatroom we had on our new site. Panos explained his hemolysis problem and it was severe. With what Panos was going through then, I wasn't sure he'd still be around 4 years later, but he has conquered the severe hemolysis problem and now is attacking the iron load that was a product of those times. He is a real survivor and I want to give my support to his unique chelation routine with just this advice. Stay cautious and observant. And once your ferritin gets to 500, revise your routine.

Agreed, well said.

wish You all the best of Luck, Panos...  You're a true fighter ... ...

Best Regards
Take Care
Umair

hi buddys

today is a good day and i want to share some news with u all.

as i told i have a ferriscan made in july 2009...

the result was:  11,3

yesterday i become the brandnew results....

it was :       5,9

this shows us that strong chelating works.....

andy could u give us some words about it...... thanks     panos

Panos,

That is excellent progress and you are now in the safe range of under 7. Ideally, the level should get down to a level of under 3 and I am sure that will happen. I am amazed and very happy at how you have turned things around. A few years back I wasn't even sure there was anything that could be done, but we have all learned plenty during that time period. Aggressive chelation, especially using a combination of chelators, can turn things around no matter how bleak it looks.

Panos and Umair have recently shown us what is possible with hard work. When the excuses stop and the work begins, the reward of life is found. For some, the work may seem too hard, and our job then is to convince them that it's worth it.

I don't want to see anyone "left behind." If you are having trouble finding the right chelation routine and you need help, please come to us and tell us your situation. We have enough great minds here and enough real experience to help you on your path. Don't let yourself become history without a fight. I keep reading even today that with treatment, thals can live to 30! Let's be leaders and change this wrong thinking. We don't know how long thals can live but we all know it's much longer than that. I personally know several thals in their 50's, with more and more approaching that age. Let's make sure the world knows this, but most importantly, let us make sure that every thal on earth hears this message.

Panos,

You rock  You have done something that can inspire everyone,you took a stand and you did it for yourself and by yourself,Congratulations !!!.

Zaini.

Great Panos ... i m really happy for u ...


Umair

here is a pic of the

ferriscan-result....

and this is my last

ferritin-check....

first time ever under ......1.000........

come down over 10.000 points.

  Panos,
 I'm really happy for u .. may you'll find more succes in ur treatment soon ..

Best Regards
Umair

excellent work body ... hey ppl now i think its reallyy serious to bring my results like that,,,im on it

We are always here to cheer you on Waleed 

Zaini.