i take the first step

Hello all and first of all happy New year!!
I wanted to give you a short update of my situation. Since summer I am using exajade, L1 and desferal in combination. I only use two at a time and switch from exjade and L1 or exjade and desferal.
My docs are not recommending this kind of combination but according to my experience, I am doing fine and my ferritin is at about 1.600, which is quite good for me.
I went even on a short holiday to Cyprus - for long weekend at the end of OCT and I was doing fine. Must admit flying was quite challenging with my lung presure (pah), so the next time I am thinking of ordering oxigine for the flight duration..

However as total result, I am happy to advice that I am feeling good.

Therefore I wanted to share this information with you ! Do not always keep strict on docs recommendations, don't be afraid of taking own decions as by the end of the day we are the only ones knowing our body and how it is acting best.

Take all good care of you and hope 2010 will be a happy year for all of us in the THAL PAL Community.

Yours Panos

Happy New Year, Panos. I agree with what you said. You are the master of your own body and only you can tell the immediate results of the things you try to help yourself. Panos, do you take L-carntine?

Pano,

happy New Year to you, too! Well, I am not for the three-part combination therapy, I have to say that.It is far too risky to use all three chelators together in so short time interval. I think you could reach this ferritin level with just the two of them but it's your call. Everyone is his own master and do as he decides.


Best of luck,

Lena.

Panos,
Best Of luck ... !! ... n Happy New Year to you too ...

Umair

yesterdays they gave me my last results......


serumferritin....                 .....1103...

i felt really really well........panos


p.s. ANDY yes i take l-carnitin every day.....

Glad for you Panos

Zaini.

Bravo, Pano!

Lena.

  Panos , i m really happy for u buddy ....

Best Regards
Take Care
Umair

Congratulations Panos.

But please always check kidney and liver functions as long as you are having the 3 chelators

manal

Congratulations Panos!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

three chelators in combination!? it is a new great idea. no one though about before!!you are a very adventurous and innovated.

Panos,

Way to go!  I hope that you are getting all of the necessary tests done.  I am confidant that everything is good, these chelators all have different mechanisms and I find they work better in combination than alone.  I can't wait to hear that your iron levels are below 800 soon!

Sharmin

Hi Panos,

I don't understand why you are experimenting with 3 chelators at one time, your ferritin is not bad at all and you can achieve your desired results from using one or combination of two chelators easily.

In my opinion there is no reason to take this extraordinary risk, sure your ferritin will come down as a result of three combination, but I am not sure what effect this combination will cause. You had mentioned you feel good which is great, however, I will be extra extra careful in monitoring your health.

Take care.

I feel I should clarify things regarding the chelation program Panos has developed for himself. Yes, he has been using all three chelators, but never more than any two at a time. All of these combinations have been used elsewhere and some are the subject of trials that are currently ongoing. Although unorthodox, I don't think there is anything inherently wrong with his approach because there are no known reactions between the various chelators and they all do act a bit differently in how they attach themselves to iron. I do think that the same monitoring that normally is done for any of these drugs should be continued, so white cell counts should be monitored along with creatinine levels and liver function tests.

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.

let me tell ya all some words about my situation....

first i will thank u andy for take part for me and clarify my past.

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)

after all this i go trought spleenectomy and when i come out the hospital....

after 3 months... i change my live completely......

i start with i