I am about to decide

Manal

I read about this biomolecular treatment post. It i good to know tht Ahmad is looking healthier.

I wanted to know the details of this treatment , the name of the doctor and the contact details. My husband is currently in germany, so may be we can talk to them.

Pls advise.

Thanks

Puja

Dear Puja

The doctor has left Germany and he is back to Egypt, his name is Dr. Emad el Said. What i can understand from him is that he is not treating the disease  as much as he is building up all the body. He says that in beta thalassemia, not all the steps of forming the Hb is malfunctioning but only the fourth step so by giving this biological cells he is making a cell repair to help continue the process of formation. This is really what i can understand from his explaination as a whole, but there are many things that i can not get from his explaination like the increase of Hb f  without switching the gamma genes.

Anyway i suggest you wait until i do the CBC on the 23rd of January to see if there will be any change in the counts or not.

As i told you the doctor is back to Egypt but the treatment itself is bought from Germany and your husband can check the company there and the site is
http://www.vitorgan.com/page_i.htm

What i can observe too is that this treatment is not ''one'' thing  or a certain medicine by itself but it is a combination of many components that the cell needs and i think the expert of the doctor here counts . I mean it is not like you go to the pharmacy and you buy hydra for example so you get it but he the doctor who chooses the combinations and the concentrations. So you will not e able to go to the company and tell them give me a tretment for thal but you have to have a prescription from the doctor to give you the concentrations. i hope you can get my point.

Today i will post the photograph of the treatment Ahmad is taking and i will ask the doctor when i meet him about other biological clinics that he knows in Germany

Please feel free to ask anything

Manal

Wow, this is my first time reading about this, as I'm trying to catch up on all the posts that I missed while I wasn't here.  This information is very interesting to me.  It just makes me wonder how many other things are out there that we don't know about.   

Manal, I wish you and Ahmad the best of luck and I will keep you guys in my prayers.  Please keep us updated.   

Thank you so much Danielle , your wishes mean a lot to me. Of course i will keep you updated and i wish the best for all of us

Take care

Manal

Dear manal

Thanks for your reply, could you also please advise the detailed description of the procedure wht Ahmad is taking. I went to the website and tried to read, it seems very complicated i am not able to understand much.  i hv only understood that they treat the body's cells by injecting some outside celss(which they take from animals and treats them and then inject), am i right ?

Is there any other doctor whom my husband can meet while he is in Germany.

Thanks a lot for listening and being patient with my list of questions.


Luv

Puja

All the best Manal - this sounds so interesting and promising.  I hope it does wonders for our little Ahmad!

Love Sharmin 

Thanks Sharmin , i hope everything would go well


Puja, you are most welcomed

What you read is the basic idea of this treatment. It works on two levels, first thing he is injecting ready made cells that the body can use to form good red blood cells so that is why i am supposed so see a change in the Hb and during the whole year of treatment, the body is supposed to reprogramme itself to keep forming good red blood cells.

I know that this sounds too good to be true, but as you can read in my earlier post of this topic that i have many reasons that encourged me to try this treatment and as i told you it is better to wait and see how Ahmad CBC willl tell us.

I will meet the doctor today for Ahmad injection and will be asking him about the name of other doctors in Germany

Till then take care

Manal

Thank you Manal

I have checked in S'pore as of now could not find any news on this kind of treatment but am still looking.

I know that you have stopped Hydrea but have you also stopped reservatol and Carao.

i am really looking forward to hearing gud news on Jan 23, 2008

Tk care

Puja

Thank you  Puja

Yes i stopped the hydra because it contradictes with the biological treatment and i usually don't introduce two things at a time in order to know the effect of each thing seperately.

Puja, i have good news, my doctor will be travelling to Germany tomorrow and he will stay there for just one week and i told him about you. He asked me where your husband is, north or south Germany and when i told him that i don't know. He said that he can call him to let you know where are the clinics that are found in Germany that use biological treatments. My doctor is in Stutgart in Germany. So please make sure your husband call him before he is back to Egypt

I wil send you a private message with his phone number in Germany

Take care

Manal

Manal,
Do your know if this treatment is for thal intermedia only or if it is likely to work for thal majors as well?

Thanks Manal, and we keep praying for good results Jan 23rd. 

Sharmin

Dear Sharmin,

According to the Doctor, he has given this treatment to 40 thal major patients. When i asked him at the beginning about the percentage of failure of this treatment, he answered that either shortage of money to continue giving the injections as they are pretty expensive or not complying to the treatment. He told me that the last thal majors who took this treatment where two brothers from Bahrain and after one year they had a constant HB of 7.5 and 9. They are not transfusing now for the last 5 years except that one of them had an accident and had to transfuse once and took part of this treatment not all the course to activate it once more.

The increase of Hb in this kind of treatment is accumalitive

take care

Manal

hi manal.
its been a long time you didnt post the updation. did you find any good results as i m looking in you matter very closely hope it helps all

best of luck

regs
micky

Hi Micky

My last update was at this link
http://www.thalassemiapatientsandfriends.com/index.php?topic=1445.0

and of course i will continue updating

manal