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story of my visit

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Offline Manal

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Re: story of my visit
« Reply #15 on: January 24, 2009, 02:09:25 AM »
Thanks for the update Umair, it is important to know that you are on the right track, seems that you really have a good doctor :wink
Wish you luck and i am sure that in the very near future you will have no worries about any health conditions, good luck :hugfriend

manal
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Offline Zaini

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Re: story of my visit
« Reply #16 on: January 24, 2009, 03:13:19 AM »
Umair ,

Your doc really seem like a good one.

With Asunra,be very careful when you start because you already have problem in liver and Asunra can effect it badly.

Wish you the best.

Zaini.
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Offline Manal

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Re: story of my visit
« Reply #17 on: January 24, 2009, 03:43:22 AM »
Umair, Zaini had addressed a very important note cause serious complications were found in patients using exjade/asunra who had previous heptic and renal complications.This should be discussed thoroughly with your doctor

manal
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Offline nice friend

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Re: story of my visit
« Reply #18 on: January 24, 2009, 12:54:58 PM »
Thank you Manal and Zaini for response ...
yeah , my doctor was talking about that , she told me to reduce Fe levels a little more so we can start treatment of Hep-C  , so i think that she want my ferritin under conrole to start Hep-C treatment and then mayb she will think about Asunra  , as she prescripted me to done HEp-B surface antigen test to examin my Hep-B's Condition , if it would bcome normal then she will start advise me to :catfight ( cope ) with Hep-C, she didn't gave any intiatvie to start asunra and also not talked about the ASunra , as i knew that my ferritin is high to the mark she gave me to start asunra , soo i felt that it is not good time to ask about asunra ... soo No progress for Asunra at the end .... she want's to cope with liver on First hand then anything else ...
something that is a little annoying is to start interferon , i heard that is too bad injection , as that is very painful , but i show's that i m ready to try that as well .. but onething that is to worry abt it someone tld me tha , during interferon's course at a ppoint ur Hg could drop to 1-2  , is it true ??
person who told me this said Hg could drop to "0" but i cant believe that 0 is impossible ... is interferon is something like Chemotherapy ???.....
anywayz, please share any kind of info if you know abt interferon or anyother medicine to cope wit Hep-C .... i I HOPE THAT YOU ALL WILLL B FINE AND IN GOOD HEALTH .....

Best REgards
Take Care
Umair
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
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Kathy11

Re: story of my visit
« Reply #19 on: January 24, 2009, 11:11:21 PM »
HI Umair,
I n reading this posting I can't help feeling Proud of you.
You are strong keep it up.
Hope the HepC treatment is not too bad.
Take care you are doing well.
Kathy
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Offline Dori

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Re: story of my visit
« Reply #20 on: January 24, 2009, 11:55:37 PM »
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Offline Sharmin

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Re: story of my visit
« Reply #21 on: January 25, 2009, 01:15:33 AM »
Umair,

I don't know anything about Interferon but I am slowly trying to learn so that we can support you through this treatment.  We gotten through a lot together - we will get through this too.  Please see below:

Quote
Anemia develops from abnormally low levels of red blood cells or hemoglobin. 
A severely anemic person’s blood cannot carry enough oxygen to meet the needs
of the body tissues.  As a result, over time the person becomes tired physically
and mentally.  When on interferon and ribavirin treatment for hepatitis C, a
reduction in hemoglobin very commonly occurs and in most cases, is managed at
levels below the normal laboratory ranges, returning to normal after treatment is
completed or stopped.  Anemia is an expected side effect of treatment with
interferon and ribavirin.

Please also see the following article:

http://www.cumc.columbia.edu/dept/gi/ribavirin.html

Sharmin
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Offline Andy Battaglia

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Re: story of my visit
« Reply #22 on: January 25, 2009, 01:30:47 AM »
Umair,

Please talk to some of our members like Smurfette and Poirot who have used interferon before making any decision. Inteferon is a very harsh therapy, but it does work for some people. For others, it does not help. Have you considered any herbal remedies that we have discussed previously. Milk thistle and Nigella (black onion seeds) both may help. See our thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=1147.msg8934#msg8934

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Offline Zaini

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Re: story of my visit
« Reply #23 on: January 25, 2009, 09:02:36 AM »
Umair,

Milk Thistle is available by The Vitamin Company,although i am not sure if this company is any good,and you can try Nigella ( kalonji) as it's very easily available.

Zaini.
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Offline nice friend

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Re: story of my visit
« Reply #24 on: January 25, 2009, 01:05:36 PM »
Hi All ,
@ Kathy ,
Thanx alot for encouragement and the wishes ... i hope that too , that i can deal with the pain :wink soo i want to give it a try ....

@ Dore ,
Thank you for the links , these link are realy usefulll. and Thanx alot fro being around to help me out .  :thankyou2

@ Andy & Zaini ,
 ffirst i would like to Say a Big :thankyou :ty to both of you , for helping , explaining and telling me abt various other treatments for Hep-C , Thank you alot .... in the light of your replies i decided that i have to talk to my Doctor About Nigella and Milk Thistle before starting the treatment with Peg InterFeron ( Peg interfero is the one which doesn't occur's Decrease in HG as i red in the link Sharmin sent ) .. i will let you know wat come's out of my discussion to my Doctor .... Again Thanx Alot for everything you people are doing , you all are very helping and helping me alot , your unconditional support is wat giving me hope to get back to ride over any prob .. :thankyou2 .....

Best Regards
Take Care
Umair
Logged
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
*

Offline nice friend

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Re: story of my visit
« Reply #25 on: January 27, 2009, 09:18:06 PM »
Hi buddies ,
i want to mention something here .
Since i started chelation and joined this group , i asked several time to my doctor that , may i take Vit-C during aafter starting desferal , she always said "NO" .  i asked again and again and again but her answer were always a big "NO" , i didn't understand why she were always saying "NO" .
in my Last Visit ( this on this friday ) she prescripted aTablet to me that has Vit-C , i was amazed to see that, when i was asking for Vit-C she awlays said "No" , and when  i haven't asked for Vit-C this time then why my Doctor prescripted me, wat's the matter ???. .... then i realized something that is realy important to share with you people .... here it is :

My S.Fe was around and above than 3000 , thats mean i had alot of Iron in Blood stream . And Vit-C is used to mobilize the iron into blood stream as well . soo it could be dangerous for me at that staged to take Vit-C supplement ..  At that time it could damage my heart as well by mobilizing and putting more iron into blood stream .  And it would useless to take Vit-C at that time bcoze there were alot of iron already in my blood stream ... i think thats why when-ever i asked about Vit-C there Answer were the same (NO) during the past 7-8 months . And when my S.Ferritin is dropped down and came under 2500ng , She Allowed me to take Vit-C  (when i was not asking for that ) .. its mean she " were looking to cope with Iron safely " ..  yesterday i was talking to one of our member, who was previously on 12/6 and 2 vials a day and his previous S.Fe was 9000 . And now he is on 14/6 days a week with 3 vials His S.fe came 14,400...
His S.Fe is increasing instead of decreasing ... then i realized why my doctor said "NO" throughout the time ...

Note , when my result was 3630 , i tried Vit-C several times , and i felt pain i my chest so i decide's to not take vit-C .... and thats why i feel that its neccessory to share with all other thals ...  i hope i m not miss guiding anyone ..  i hope i make the sense .... wat do you say ??? please have your say bcoze it has been a great issue for me throughout the last 5 months ....  i mean't to hurt or dis-grace anyone or to say that i m right & you were wrong ... i m just sharing my thoughts/view ..

Best Regards
Take Care
Umair
Logged
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
*

Offline Andy Battaglia

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Re: story of my visit
« Reply #26 on: January 27, 2009, 09:39:53 PM »
Umair,

Your experience is very relevant and is something that should be investigated. Perhaps Sharmin can add this to her list for Dr Vichinsky.

Does vitamin C in low doses pose any danger to those with very high ferritin?
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Andy

All we are saying is give thals a chance.
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Offline nice friend

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Re: story of my visit
« Reply #27 on: January 28, 2009, 08:53:20 PM »
Hi Andy & All,
i got to kow that Nigellla is widely available here in Paksitan and my City as well ...  i found a Packet of Nigella Seeds in my Kitchen  .... Thats great na ??... yeah its Sooper ..... now i have some question about how to use it and eat Nigella seeds As a Remedi for Liver N Hep-C .....

i have a few question here :

1) How to eat Nigella Seeds as for the treatment of Hep-C ( Liver ) ???.....
2) To wich thig it will b more effective to take Nigella Seeds with water, milk, Honey or nything  else if you know..???
3) how it will be more effective to take please tell me in details how to take it with wat to ix it and any other procedure of taking Nigella Seeds ....

please if i missed to ask anything that you think , is important to know then mention that as welll  ....

Best Regards
Take Care
Umair
Logged
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
*

Offline Manal

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  • mother of thal intermedia child
Re: story of my visit
« Reply #28 on: January 28, 2009, 09:43:39 PM »
Umair, what i know is that the seeds are squeezed and you take their oil and this is how my brother used to take it for the asthma. I will search for this and let you know

manal
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Offline Zaini

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Re: story of my visit
« Reply #29 on: January 29, 2009, 03:09:09 AM »
What i do and what is mostly done is to just swallow a few seeds with water in the morning on empty stomach,i take them with warm water with a spoonful of honey in it.

Zaini.
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