Discussion Forums > General Chatter
Just wondering how Umair is doing and if anyone has heard from him
Sharmin:
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
Manal:
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
Dori:
--- Quote from: Andy on March 08, 2009, 06:20:35 PM ---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.
--- End quote ---
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... :shy
Andy Battaglia:
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.
baal:
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
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version