Just wondering how Umair is doing and if anyone has heard from him

I wished I talked to you on msn.

i hope too Dore ,

Take Care
Umair

Umair, I am glad that your health is improving and that you are taking precautions and doing all of the appropriate tests.  I am very very glad that you are going to be doing IV desferal. 

Sharmin

That's nothing special i have done Umair,we just like you to be here .We all just get worried when we don't get any response from you,it was nice talking to you .

Zaini.

The med will help reduce the fluid but does nothing to counter the reason the fluid is there in the first place. The weak heart is the reason and iron is the reason the heart is weak. An echo test has some value for thals but it cannot diagnose iron overload, and this is why the T2* has become the test of choice for measuring iron in the heart. I can tell you right now that Umair would have a very low T2* score. However, Umair has been on the right track and what we are seeing is the effects of having allowed his ferritin to go through the roof in the past. Unfortunately, the heart is the slowest to release iron, so Umair is now at this point. He has made great progress in lowering ferritin but now he must also get the iron out of his heart. He can continue to do what he has and hope he survives until his the iron in his heart is slowly removed. Nur has been doing this by taking desferal 7 days a week. Her T2* score has risen from below 10 to close to 14 in her latest results. This is good progress, but as I told her, she is still in some danger and has to continue her hard work. However, if it was possible for her, and currently it is not because of her job, it would be much more effective if she could have IV desferal administered for 7-14 days straight. This is the therapy that would have the most dramatic and quick effect and hopefully, Umair will be able to take IV desferal for at least a few days straight. Masuma went through this and was even worse off, even though she had chelation at her disposal in the easy to use form of Exjade. She slacked and almost paid for it with her life, as she had to be hospitalized in the ICU because her heart had gotten so bad. Masuma also designed her own combination chelation using desferal and Exjade and her ferritin is now around 1000. Umair can do the same. I would also highly recommend that Umair take IP6 twice daily, as it does offer some protection against iron oxidation.

Umair, I know that with some work, you can turn this around, but IV desferal is where you need to start. You need this dramatic effect to get your iron down low enough to where you are in no immediate danger (and with symptoms of congestive heart failure, you have to realize that there is some danger). Once you get some of this heart iron removed, your daily chelation can do a much better job at keeping you happy and healthy. We're all here behind you and I know you realize that with our support, you can do this.

For myself, I am very happy to see the level of support offered during this time and I want everyone to realize how much easier it is for the patients when they know they have this support. I have seen what support has meant to Nur and I see daily what it means to so many people. We are truly embracing the spirit that Lisa meant this group to have and in my opinion, this is what really makes us different from so much of what you find online.

I don't see a reply to this but it may have been answered already, but an NO inducer is anything that helps to increase nitric oxide levels in the body.

Umair,

I also wanted to add that your doctor may not know the benefits of L-carnitine as well as Andy does.  Little As doctor is a wonderful doctor and has generally done a great job with him, however - he does not have the same knowledge with regards to supplements that Andy does.  I feel very fortunate to have put little A on the supplements that Andy suggested - because they highly commended their use in Oakland.  I did not go to Oakland until 2008 - but luckily with Andy's guidance I put little A on supplements beginning late 2006 (shortly after the antibody problem started) and he was able to avoid many of the problems that the situation could have posed. 

We are very lucky that our doctor supports what I learn here and in Oakland - and he agrees with it when I tell him about it - but he would not have known to suggest it himself.  I was very fortunate to have learned about l-carnitine and alpha lipoic acid here because when I asked about it in Oakland they prescribed it for me and told me that it is being studied as a supplement that can improve heart function.   

Andy has also been telling me about vitamin D - the doc here was aware of the deficiency, but perhaps not able to deal with it - thankfully Andy had me put my son on some supplement so that he could have some improvement - otherwise his health may not have been as good as it is. 

We have also found that the echo is not as accurate as the T2* - so just keep working hard on chelating regardless of your echo results. 

For these reasons - if your doc does not agree with this advice it may be a good idea to have her contact a center like Oakland. 

Sharmin

Umair, i can not add more than Andy and Sharmin.

The only thing i want to emphasize is not to underestimate the condition because the swelling has decreased or because it had happened before because  as Andy mentioned the cause still exist and it might hit harder the next time.

All i want to say is that it won't be easy but with your detemination definetly you will do it and we are always be your side. Forever in my prayers

manal

The med will help reduce the fluid but does nothing to counter the reason the fluid is there in the first place. The weak heart is the reason and iron is the reason the heart is weak. An echo test has some value for thals but it cannot diagnose iron overload, and this is why the T2* has become the test of choice for measuring iron in the heart. I can tell you right now that Umair would have a very low T2* score. However, Umair has been on the right track and what we are seeing is the effects of having allowed his ferritin to go through the roof in the past. Unfortunately, the heart is the slowest to release iron, so Umair is now at this point. He has made great progress in lowering ferritin but now he must also get the iron out of his heart. He can continue to do what he has and hope he survives until his the iron in his heart is slowly removed. Nur has been doing this by taking desferal 7 days a week. Her T2* score has risen from below 10 to close to 14 in her latest results. This is good progress, but as I told her, she is still in some danger and has to continue her hard work. However, if it was possible for her, and currently it is not because of her job, it would be much more effective if she could have IV desferal administered for 7-14 days straight. This is the therapy that would have the most dramatic and quick effect and hopefully, Umair will be able to take IV desferal for at least a few days straight. Masuma went through this and was even worse off, even though she had chelation at her disposal in the easy to use form of Exjade. She slacked and almost paid for it with her life, as she had to be hospitalized in the ICU because her heart had gotten so bad. Masuma also designed her own combination chelation using desferal and Exjade and her ferritin is now around 1000. Umair can do the same. I would also highly recommend that Umair take IP6 twice daily, as it does offer some protection against iron oxidation.
                                                                                    

Andy, may I interrupt you?

At the moment I am not at the top of health nor at the top of good brain function, so this might be a silly question.

Your post make me feel very worried, to be honest. Exjade is alll I can take and in general it does not remove iron out the heart, does it? After 6 months it is still not working; it's not noticable in the blood results. I must go off now. I will write further so soon as possible, but i hope you understand what i am trying to ask...

Dore,

Actually, the early reports on Exjade and heart iron have been good. It does appear to remove iron from the heart. Is your dose high enough yet? 30 mg/kg daily.

i have a problem too.....
i have start the l-carnitin like manal told me...
but for a few days.....
i have terrible sugarlevels.....
gos to 300-350....
may this comes from the drug?
and if....what to do?       
                               panos

Panos,

I don't think that L-carnitine should have any affect on your sugar levels - but Andy would know better than I about this.  L-carnitine is a naturally occurring amino acid so I don't think that it should have this effect. 

Sharmin

Panos,

Is there any sugar of any sort in the ingredients? It shouldn't raise sugar levels. In fact, there is some belief that L-carnitine can make insulin more effective in the human body, although studies of this have had conflicting results. However, no study has showed any negative effect on diabetes from using L-carnitine.


http://journals.indexcopernicus.com/abstracted.php?icid=866864

Effects of L-Carnitine on Glycemic Control and C-Peptide Levels in Patients with Type 2 Diabetes Mellitus
Shahram Hadadinezhad, Nargess Ghazaleh, Zahra Razavi
Turkish Journal of Endocrinology and Metabolism 2008; 12(1):1-9
ICID: 866864
Article type: Original article
IC™ Value: 4.42
 
Objective: This study investigates the effects of L-carnitine on glycemic control in non–insulin-dependent patients with diabetes mellitus.
Materials and Methods: The effects of L-carnitine on levels of blood glucose and C-peptides were studied in 25 women and 35 men with type 2 diabetes mellitus, with an average age of 53.3 years. Patients were randomized to either the L-carnitine or the placebo group. During a 3-month period, 1 g oral L-carnitine or placebo was administrated 3 times a day (3 g/day).
Results: A significant reduction was observed in the fasting blood glucose level in the L-carnitine group at Week 12 (end of study) compared with the level at baseline: 143.93 ± 34.74 mg/dL and 129.43 ± 32.16 mg/dL, respectively (p < 0.05). No significant changes were observed in either group for concentrations of 2-hour postprandial blood glucose, hemoglobin A1C, or C-peptides.
Conclusions: L-carnitine significantly reduced the fasting blood glucose level at Week 12 but had no effect on 2-hour postprandial blood glucose levels, hemoglobin A1C concentrations, or C-peptide levels in patients with non–insulin-dependent diabetes mellitus. Turk Jem 2008; 12: 1- 3

No study showed an increase in sugar levels but some showed a temporary decrease.

@ Sharmin
Thanx sis , yeah i m gonna start IV desferal today ... 

@ Zaini

we just like you to be here  .We all just get worried when we don't get any response from you,it was nice talking to you

Hi Sis,
i m feeling that i m a Rockstar , you made me blushy Thanx sis , its nice to talk to you and all of this site's members as well .... thats reason, why i m awake at this time ...

@ Andy
Buddy , i planned to start IV desferal today , soo , i think m getting stareted from the mark you told me ,
i won't to admit in Hospital  and stay even one night in ICU soo i planned to take IV desferal at home , i think it will b also good , but if it bcome's necessory then i will think abt it , its not out of question , it wil still remain as an option .  T2* and Ferriscan both Facilities are unfortunately not available here in my Country , soo it seem's  like something out of question , but ECHO Facility is widely available here . 
I have Also interest in starting L-Carnitine and i will talk to my doctor as well , last time when i asked her abt it somewhere in-between october & december 2008 , at that time i was on Hep-B's medicine and suffering to stomach aches as well , mayb she thats why she said no to it .  but i wil ask her again .

@ Manal ,
Thanx for remembering me when you pray , i realized the danger  that is waiting for me in future if i dont  take it serious at this stage , soo , to avoid that worse situation i m planing to start working on pre-cautional steps to avoid any kind of danger in future ... Thanx for your concern
----------------------------------------------

Hi All,
  wat Sharmin said , Andy helped me alot to make a come-back in good condition as well , before joining this forum , i was searching searching and searching but unable to understand anything, i was unable to decide abt the information i got is latest or its true or not , i dont had any guidence , i found guidence here on this forum , soo much more to say but due to shortage of time ( here it's late night in Pakistan ) i just want to say , Thanx Andy for making this forum , for dedicating your time for this forum, for everything that you did in this sector , Hats of to you Andy Buddy  ... i dont think that it necessory to say but i want to say  keep this good work up buddy .... you're realy a kind hearted friend , thanx for your concern .  Take Care of you self as well , bcoze you're prescious/priceless for Thalassemia Patients , parents  and friend , your are prescious to keep this forum runing .... soo Take good care of your self as well and dont forget take proper rest ... God Bless You ....

Best Regards
Take Care
Umair

just thx for the respond....
at my packed they wright that there is
80 mg carbonhydrate in the l-carnitin....
shoud i get enother one...?

Umair, I know that with some work, you can turn this around, but IV desferal is where you need to start. You need this dramatic effect to get your iron down low enough to where you are in no immediate danger (and with symptoms of congestive heart failure, you have to realize that there is some danger). Once you get some of this heart iron removed, your daily chelation can do a much better job at keeping you happy and healthy. We're all here behind you and I know you realize that with our support, you can do this.

For myself, I am very happy to see the level of support offered during this time and I want everyone to realize how much easier it is for the patients when they know they have this support. I have seen what support has meant to Nur and I see daily what it means to so many people. We are truly embracing the spirit that Lisa meant this group to have and in my opinion, this is what really makes us different from so much of what you find online.

Hi All buddies (Especially Andy),
yes can do it , and i will try my best, Your support mean's alot to me , soo please keep supporting me , i can guess where i could be without knowing this site, And without knowing you people, And without your support ... i believe that i wil come out of this condition as well , and i will try my best to make this possible . yeah that, this community is different to so much other in many ways . Thanx for the support that you gave and thank you for assuring that you all will keep me encouraging in future as well ... it mean's alot for me ....  Thank you all

( another reason why i want you to keep supporting me : i m gonna take part/contest election when ever it took place here in my country again   just kidding )

Take Care
Umair