I feel i have reached the end of my road.....

...I keep using my Desferal, and the numbers keep rising.  It's so frustrating.  When I went to get blood yesterday, I was actually excited to find out my ferritin level, thinking that I was doing really well with my  medicine, and that the number would be lower.  Well, to my surprise, it was higher ... a LOT higher.  Now, I know that some experts say that the level in the blood sometimes increases before it falls, because it's pulling from the organs,....

Hi,

I've been facing the same issue and guess what? My doctor says the same that the Iron is now moving out from the tissues into the blood stream which is causing the elevated S.F result and it is nothing to worry about. 

F.Y.I My S.F has risen from Higher 7000's to Lower 9000's

What !!!!!! Sajid are you telling us your ferritin is in 9000 range. I can't believe what I read. Pardon my ignorance I never knew your numbers. I expect from an experienced member to have much controlled levels of ferritin. I am in shock.

Hi,

I've been facing the same issue and guess what? My doctor says the same that the Iron is now moving out from the tissues into the blood stream which is causing the elevated S.F result and it is nothing to worry about. 

F.Y.I My S.F has risen from Higher 7000's to Lower 9000's

Sajid,

What iron chelator do you use and how often?  I'm very worried about your numbers, Buddy.  Has your doctor recommended anything different? 

My doctor wants me back on the Exjade along with the Desferal, so that's what I'm doing.  I'll see how that goes.  I just feel like whenever I get my numbers down, they go right back up again, because of all the blood I receive.   

Sajid, please do take care.  I know you are much more expierenced in chelation so please do something



Ambareen, when i went to one of the medical centers to give my son his treatment, i saw many people there who take ozone sessions to help them with virus C. Today i asked the doctor how ozone helps and he said that:
1- it increases the body immunity by acting against free radicales
2- helps the body to excret its own interferon to fight the virus. The natural body interferone is suitable for all versions of Virus C rather than the interferone medicine which is only suitable for version 4 of virus C
3- Virus C has something called ''motlia'' by which it can cling to the liver cells, get attached to them and then excret its RNA in the liver cells causing is replication and therefore an  increase in the quantity of the virus causing cibrosis. So what the ozone does is that it weakens or does not enable this motlia to function and therefore the virus does not get attached to the liver cells. So the virus becomes free and acts as a dorment virus. So the ozone does not get rid of virus C, but help in making it dorment by not enabling it to replicate, resulting in lower quantities.

The doctor told me that ozone is not a treatment, but it is an aiding treatment. Patients don't stop taking their liver medicines but they stop taking the interferone.

I talked to a couple of patients in the center and they said that after excessive course of ozone, there quantities had significantly decreased

Ozone is taken through the blood. About 100 ml of blood is withdrawn then the blood is mixed with the ozone gas with calculated concentration then the blood is transfused back to the body.

I just came to know this about virus C, and i hope that this could be of any help to you

Take care
Manal

Hi everyone,

Thanks for all your concerns

Well, my doctor is not worried much and is telling me not to also since the previous test was taken when I had joined J.S.F and was taking 2g Desferal only once a week or two. While the newer test is taken after I have been regular on 2g Desferal (6X a week; well there had been some supplies issues for about a month or so but definitely I have been taking more Desferal compared to before joining JSF). So, my doctor's theory is that the Iron is now mobilised from the organs to blood stream from where it will go down once all the stored iron is evacuated from the organ tissues.

Let's see what happens in the upcoming months

But Sajid!!

This is still high, plz do something,doctors often ask us not to worry bcoz they see patients with that high ferritin almost every day (sorry guys but this IS the sitution in Pakistan)but you know better then them, so plz do worry 

ZAINI.

Hi Zaini,

I know what you mean. The reason why I'm contented is the sudden increase in SF level. I had been taking less Desferal for about 10 years or so and the level went up to about 7000 but when I started to take it more the level increased by 2000 in just 6 months. So this means my doctor's theory could be correct (at-least I hope so )

Sajid,

You keep watching your numbers and please let us know how are you doing.

Thanks

 

OMG Sajid!!!!!

What has happened? In the 30 yrs I have been taking desferal my SF has never reached that high....

I hope that your doctor is correct with his theory...It is true that the SF does come out of the organs...

Hope your results are better the next time you post in here

 

I wish you the best Sajid,i think your doctor's theory might be right,bcoz we've seen this happening with the new exjade users,there S.F levels go high before coming down,i hope same is the case with you.

ZAINI.

Ambreen, I am soo touched by your post. I had tears in m y eyes when I read the post. Then as I read more posts, I felt very happy that you have got back your inner strength. I pray that you stay strong and be a guide for new parents like us.

Sajid: Please take care of your ferritin. Here is US, many people have tried combination therapy (L1(on compassionate ground)+ Desferral) to quickly reduce iron overload. As you know that high ferritin is not good for your heart, please talk to your doctor to find out if you can use the combination therapy. I am soo worried for you. please do take care.

Sajid,

It is quite likely that your doctor is correct, as we see this over and over with iron overloaded patients, once they start regular chelation. I believe it is a good sign as it means the iron in the body tissue and organs is being released so that it can be chelated. This is normally a short term rise, and the fact that you are taking more desferal these days is the most relevant thing here.

Sajid, I am going to be frank with you. You are at an age when heart failure can happen quickly in the iron overloaded patient. Your diligence in chelating now  is the most important thing. I agree that you should also reconsider L1 in combination with desferal, as nothing will work better to lower your high iron load. Even if you can take a small dose of L1 daily (I know a patient who is almost 40 who has done this along with desferal and has out survived her peers in a situation where few reach her age) you will greatly enhance the chelation taking place in your body, and since L1 works so much better than desferal at removing heart iron, if at all possible, you should take a second look at L1 if your white cells are at a  normal level. Please also convince your mom that IP6 had nothing to do with the amoeba illness you previously contracted. That can ONLY be contracted from water containing the amoeba and this is common in warmer climates (even Florida).

We want to see you stick around brother.

Hi everyone!

Thanks for your encouraging words.

I'm trying my best to chelate provided the supply of Desferal is continuous. There was a gap of about a month before I was able to get them again due to supply issues, holidays and December tragedy. I'm due to get another stock for upcoming weeks; let's see if I am able to get some tomorrow.

My doctor isn't much impressed with my WBC counts to start L1 because she just manages the transfusions and goes by the book for chelation; however, we have a visiting (hemo) who wants to give it a shot (probably for experimental reasons) but that was before I got my latest S.F and my doctor had postponed his request till the result had come. I wonder if she will do it when the next time he visits us.

We want to see you stick around brother.

Please take care Sajid,you are an exceptionally intelligent and brave person,i am looking forward to meeting you someday .

ZAINI.

Salaamz to all....

 This is the first time that im reading about combining EXJADE and desrafal together, coz in our centre its said to be dangerous to do that...!!!