Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: Manal on September 24, 2007, 02:55:25 AM
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Hi everyone
This post will be quiet long, so bare with me cause many events had occured to me the last couple of days.
Two days ago, my cousin ( who recently knew my son had thal) advised me to pay a visit to a newly opened center that offer natural, non invasive medical therapy in different fields (ozone therapy- biomolecular therapy- neurostimulation- skin therapy using sea weeds+laser+ozone-)
The owner of this center is his friend who had a horrible five years expierence with his daughter. She had a brain cancer when she was 10 years and after horrible stories they had succeded in conquering cancer but the little girl who is now 16 years old was left blind as the chemo had affected deeply the nerve of the eyes. Anyway, he was inroduced to an Egyptian doctor who studied and lived all his life in Germany and he treated her with biomolecular therapy for one year and now this girl can see once more but no more than 6 meters till this point. I met the girl today and yes she can see. Her father said that as long as the nucleus of the cells is still alive, the biomolecular therapy can regenerate new cells and that what happened to the nerve of the eye.
When I sat with this doctor, he is now between Germany and Egypt, i told him about my son's case and to my surprise he told me that he made researches on thalassemia for seven years when he worked at Bahrain for a while as most couples are relatives and thal is widely spread there. /he had many cases that were treated by biomolecular therapy and the people who had the cost and the patience to continue the course began to make their own blood.
This treatment is offered by:
http://www.vitorgan.com/page_i.htm and this doctor work as a researcher for this company for 12 years. He told me that the treatment is made up of components of the cells taken from an ox without the nucleus of these cells. According to the company, the ox is the most suitable in its cell components compared to humans. This is what we call Live cells, hope you have idea about.
According to the doctor, Beta thal patients don't have problem in ALL the process of hb formation but only in step number 4. He said that there are 7 steps that happen in the bone marrow before the formation of the stem cell itself to form blood , the beta patients has a problem in step 4 only regardless the kind of mutation as long as it is a beta and nothing else. The treatment will do two things:
First: he told me for simplicity assume that you need a,b,c,d to form Hb, your son has a and c for example that are muted so the medicine will give him ready made a and c and the body is going to use or combine them to form healthy blood
Second:While doing this process the body will change its muted programming in this step so that when the medicne stops the body will continue to program in a correct way. When i asked him howcome and this is a genetic disorder and in this case why then we need gene therapy, he added that again it is not the original cell itself that is muted in beta, but it is one of the steps in the process of forming HB and gene therapy is still needed in other felds
When i asked him about the side effect he said none and when i told him that everything has its own risk. He said that when you exceed the dose , comes the side effect and he added that when i eat, nothing happens to me but if i eat the same food in large quantities, my stomach will hurt.
The treatment takes one year, 3 heavy months where you are injected day after the other , then twice weekly then once then once a month untile none , then finished. Some patients may need more like activation injection once a year or twice or may be not at all
The last kids that he treated where from Bahrain and they were three brothers who were major , they transfuse every 20 to 25 days and after their treatment, their Hb stablized at 9,5 and 8 and 7.5. They had never transfused for the last 5years except one of them made BT once due to an accident.
I asked him since what i hear is a miracle to me, why is this not worldwide known. He answered that this has to do with politics as the majority of the world economy goes in weapons and drug manufacturing and countries like the US manipulates all this and won't let any homupathy companies emerge as their economy will get affected.He added that when he writes a medicne for some patient in Germany, the insurance pays but when he writes homuptic medicnes, the insurance doesn't pay.
I asked him about the Rodex and that i know it is also made from bone marroow of some animals so it has the same concept as his company. I told him that Kabir-love son didn't increase much on it just one or one and half grams which is too low. He answered that he knows the rodex and i shouldn't compare as there are different compositions with different ingriedents and each company has its own research. He said that sometimes differnt brands has different effect on the body though targeting the same disease.
When asked him when do i expect a change, he said that within weeks mostly one month and when asked him should his HB increase one or two grams , he just said that he is supposed to have normal Hb for a child of his age meaning 11 or 12
I asked him when he can decide whether to stop this treatment for my son or not. he just said usually this doesn'happen but if it did , he can say this after one month. He said that there is no allergies to this treatment as he gives the body exactly the normal cell componenet that it needs.
Injections could be given on daily basis or once per week but not a shot, you stay for 4 or 5 hours taking the solution as we do when we take glucose for example
I asked him to give me reference of the patients, he gave me the web site of the company and told me that they keep a refrence of patients and i can ask them
He said he can take any thing with this treatment except hydra as it contradicts with his treatment. His philosophy is that taking a medicne with side effectas to cure something,you will turn on later with a damage in the thing that you cured
I asked him directly, is this a trail medicine or in other words is what he is offering to may son is considered trails or he knows what he will e expecting, he assured me that there are no trails and this has been known for their company and they won't lose their name in the market ofter 50 years from being there
He said that these medicine will cost from 5000 to 6000 euros for the whole year.
He insisted on examining my son's iris as he said that it tells him if there are any hidden diseases or if the malfomation of blood is due to extra factors other than thal like liver malfuncting. So he can decide that he needs energy therapy with biomolecular therapy ot not
I am going to meet my hematologist and see whar she will say, but this doctors seems very confident and above all he understands thal quiet well
Hope i didn't for get any points and soooooooooo sorry for such a loooooooong post
Manal
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Hi Manal,
I'd would really like to know what he is really doing rather than knowing that he is going to inject cells A B C D. This is something I have heard of for the first time.
All I know about the Stem cells of the bone-marrow is that it undergoes several stages to become the component cells (RBC, WBC and Platelet etc).
Probably this treatment involves the transfusion of intermediate form of the stem cell that are going to turn into RBC eventually. In other words, is he going to give a premature blood transfusion of these cell from another source whose stem cell looses the nucleus to decide to become an RBC? :huh
Will Ahmad get any antibodies from the animal of the source?
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Hi Manal
I read through your post twice.I felt fear and desperation and uncertainty.
I know, if Ahmed was my son I would want to do whatever possible for him to have a better quality ,and a long life.
I have so many questions and reservations about what I have read and it petrified me,I dont know why?
Please find out all you can before you make the decission to put your son through the treatment.
May god Bless you with clarity and I hope you come to the right conclussion,be very carefull, he is precious little boy
:hugfriend :hugfriend
If possible talk to some of the doctors' previous patients. to get a fair view of it all
goodluck to you and your family
Much love Kathy
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Hello Manal,
I read through your post twice.I felt fear and desperation and uncertainty.
I know, if Ahmed was my son I would want to do whatever possible for him to have a better quality ,and a long life.
I have so many questions and reservations about what I have read and it petrified me,I dont know why?
I agree with Kathy,i don't know why?please don't be dishearted or disappointed,but it's a big decision to make, and why you stopped thinking about retrodifferentiation?it seemed like a bit normal procedure as it is supposed to use body's own cells,not any foriegn elements,and i don't know but i don't much agree with his philosophy for not being known world wide ,anything that revolutionary must make the international news at least,govts can and do manipulate market,but what about the media,ther are free source,just take retrodifferentiation,i heard about it in Pakistan,you heard about it in Egypt,means it became known all around the world, anyways do some research and go ahead with what your heart tells you to do,
:goodluck
ZAINI.
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Thanks all for your concern and replies, i know this is soo confusing
Sajid, he is injecting components of a living cell that is needed to form a correct stem cell in the human body. So all the stages he is talking about are far beyond the stage of the stem cell. His target is to make the body form a correct stem cell of its own. According to him no antibodies will be formed because no neucles is involved in this preocess
Kathy, I am praying that God shows me the right way and gives me clarity, this is really so tough. As you said i am emailing the company in Germany to get the patients contacts or any refrence, wish me luck
Zaini, i didn't stop thinking about retrodiff, but a week ago i emailed Dr. Ilham many of my questions and concerns about the process. I sent them on her personal email and on the tristem company mail. I received no answer and i guess that i won't receive any. The kind of questions i mailed her were od a kind that you have to have accurate answers which i don't think she has answers to them yet. I can not go through this process unless i have them answered. If you like, i can send them to you.
The coincendence is that when Dr. Ilham was in Egypt last May, she visited the center and discussed with them the procedure of taking her royality. The center postponed this until her trails are approved by other organizations. I asked ( as if i don't know ) where her trails are done, the owner of the center said it is done in Pakistan and Jordan and when i said that i heard they are also done in London, he said that in london it is limited in research as the English government didn't approve this yet to be done there. So you can see it is pretty messy and unclear and till now i didn't receive any feedback from her.
Sometimes i say to myself that i tried chemotherapy ( which to me was a major step), so it is more easy for me now to try other things. What concerned me was that when i asked the opinion of this doctor about the effect of switching on gamma genes in the body and whether this could switch on any other unwanted things in the body (like carcenogenic genes or any of this sort ) , he replied that definetly this could happen. He added that there are 30 hormones in the human body who nobody knows any thing about them or how they are formed but definetly they are doing something so it is very confusing
I am really so stressed and there is nothing to do unless trying, i will be waiting for the opinion of my hema and see what she is going to say
Manal
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Manal,
Thank you for sharing this information. I think you asked all the right questions and I think the best thing now is to talk to the patients and get their feedback. I am still researching this company and hope to find out more. Asking hems about alternative medicine is of course an important step, but it has never gotton me the answers I want to hear and they are trained and accustomed to treating patients their way. Keep us informed. Thanks
Regards
Bharat
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Manal,
Let us know if you can get any actual patient results or testimonies. The Patients link on that site is no good and I can find very little online about this process other than what the company themselves say.
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Hi Manal,
I am afraid that this "wonder doc" might not be serious nor his therapy...
Can we help somehow, maybe you can give us details of where he was working and having thal patients in Germany..
I never heard something like that... :(
Maybe we can find out more about him over here - just give us some more details, if you like on a personal message...
Believe me, it makes me angry and sad, when docs are playing with our parents emotions - just seeing to earn money...
I know about the fears and hopes of parents and relatives... I don't remember how many times me parents hoped due to wrong information of wonder docs for helling and miracles.
Take care,
Panos
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Dear Manal,
Remember stress is no good for you.You need to stay focus, If in doubt you have the choice to refrain yourself,A sure bet
it is safe to stay with what you know has already make a difference in other thals patients
I care about you and Ahmed and I know you are a sensible person
and you will make the right choice for you and your family.
Love you :wub :wub :wub :wub :wub :wub :wub
Kathy
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Bharat, thanks for your support, i will keep you updated
Andy, i have a relative who works in the pharmacology and lives in Germany, i gave him the the address of the company to see its reliability in this field and told him to phone them to ask about patient reference or sucess rates in similar cases
Panos, what you said is really what i need. Thank you sooooo much for your kind offer. I really appreciate it so much. I will PM you all the details tomorrow so i can have them all, but right now all i know is that he has been working for 12 years and still working as a researcher for the company (Vitorgan) that manufacture the medicne. The patients he treated were from Bahrain
Kathy, thank you for being there. i will investigate as much i can and hope that i can make a correct decision. You can not imagine how this doctor is so confident. When i told him that i accept the fact and it is okay for me that we are trying this treatment. He answered that he is not trying but he knows what he is doing and what is expected. So you cna see , hearing this as a mother makes me think million of times. Anyway i hope things get more clear in the coming days
All my love to you all
Manal
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Manal,
I know that you will do what is best for your adorable little boy. Remember that there is so much on the horizon for thalassemia - you should not feel rushed to make any decisions. I don't know if this treatment is valid or not - but make sure you have all of the facts you need before you make any decision. I wish you all the best in making these decisions.
Don't worry my friend, there will be a cure for our children soon.
Sharmin
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hi manal,
well though i dont know much about what is happeing.though my son is under rodex for now 9 months. and this is also from germany i hope the method must be quiet same its just that its being treatet by homeopath so its under suspecion always, well my some hb is 7.5 till now but what ever is it his growth is very normal and beside this no bt ever done and i m happy with this only.. apart he is a very happy child so i hope even this rodex buy we good time if not cure him but i hope till the time some one come up with 100% cure im really greatful to this doctor.
anyway i dont think that as your doct. said the hb will inrease in 1 month , as it will be 3 months atleast rest if you undergo the treatment then keep me updated aswell my email : hsimpex@rediffmail.com ill recheck with my doc. as they both are using almost same kind of method. and as per my doc. now its 2 year teratment to stablize the hb. well for rest just pray to god to get the best of all here....
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Hey Manal,
try to calm down and relax, i know it's a big decision,i am also a mother of a thal kid,so i know how hopes go up when we find something like this,and how fear clenches our heart for the unknown, but as Kathy said you need to be focused,the link for the patients on that side is not working,so it would do a lot of good if you can get some info about patients through your relative,though i think an important link like that should not be inactive,
Take deep breaths and calm down ,we are all here to support you. :hugfriend :bighug
ZAINI.
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Sharmin. Kabir-love and Zaini ,thank you sooo much for your support :hugfriend :hugfriend
Manal
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Hi Manal
When I talked to the thal speciallist about the alternative medicines Hassan was taking, she told us over the years she had heard a lot of such claims. Infact when she was in Germany for a seminar she had met patients claiming to have been cured from thal. While there she tried to contact the doc responsible but he was not willing to talk to her. She also said she had heard such claims from Bahrain as well. Now I wonder if she was talking about the same therapy .
regards
maha
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I agree with Panos,
I was born an growth up in Germany and my parents try to find a cure for thalassemia. If there where a cure for thal you could read it in any medical journal. This new woud be spreed all over the world in a short time. But since i try fo finde out everything about thalassemia i never heard about this cure in Germany.
If you want you can tell me mor about this doc. maybe i can find out more about his work in Germany.
God bless you
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Dear Manal,
I wish I had some knowledge of this treatment, but I don't. I can only offer support and love, and hope that you can get in touch with some people who have tried it. I know that back in the 70's, a nutritionist/chiropractor thought he could cure me with wheat grass pills, and different kinds of nutritional supplements. He wasn't a medical doctor, and he was kind of on the right track, but he couldn't change the fact that my body was unable to make blood correctly. It does seem that if this guy was on to something that big, more people would know about it. Your hemotologist will probably not really consider it if the research has not been in medical journals. As you know, most doctors laugh at alternative medicine, or anything that they do not know about.
You do such an amazing job of researching and looking for help for your son. Good luck, Manal, and as usual, keep us posted. Your friend, Jean
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Thank you Maha,Gabrei and Jean for your replies and support.
Panos and Gabri, i found out that the doctor is shutting off his business in Germany ( his clinic is closed now as he is returning back after 40 years in Europe) His name is Dr. Emad al Sayed and his clinic was in Stuttgart.
Here is my last update, I had an appointment with my hematologist and i told her all the details and while i was talking she was nodding her head on some of the points which i was saying and she was murmering like '' i heard this before'' . To my BIG SURPRIZE she agreed on trying this new treatment and stopping the hydrea. She wanted to ask him some questions and they talked over the phone. She said that that we will not lose as these are biomolecules and we can early judge this kind of treatment in one or two months and finally we can retun to hydrea any time we want.
To tell you the truth before i met her i was concerned that she will oppose everything i say ( usually doctors don't accept alternative medicines ) and i will end up torn by the high confidence of the doctor and the disagreement of the hematologist. I was so releaved. So i decided to start this treatment. I ordered the medicines and they will be sent to me here in Egypt next week. There are some points that made me decide this:
First, i really prayed a lot that God gives me the ability to decide correctly and each time i proceed and know more about biomolecular therapy, i feel more and more comfortable
Second, my hematologist agreed and is very interested
Third, no side effects ( to my present knowledge)
Fourth, i don't have to wait to finish the whole year as a raise in HB should be detected in the first two months
Fifth, After trying chemotherapy (hydrea) it becomes really easy to try anything else. :rotfl
Sixth, at any point, i can get back to hydrea once more
One last thing, please wish me all the luck in the world and include Ahmad in your prayers
All my love to you all
Manal
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Manal,
It was a good sign that your hemotologist was for it! I will be waiting to hear about Ahmad's progress. Good luck, I will be praying for him. love, Jean
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Hi Manal,
Wishing you all the best.
Praying for Ahmad always :pray
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Hi Manal,
I wish you all the best. Inshallah if this treatment is a success it will open doors to all of us here.I will be praying for Ahmed and it really helps when your hemo is with you.
Love
Maha
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Manal,
You are in our prayers. You have a fantastic Hemo. Makes all the differance.
Keep us informed.
Regards and best wishes.
Bharat
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Manal,
Wishing you all the luck,you and Ahmed are in my prayers,please keep us updated.
ZAINI.
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Manal,
Wishing you and Ahmad all the best. So little is known about what triggers things in the body. I hope this will do it.
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Manal - Ahmad is certainly in my prayers - I hope everything goes well for him. This treatment may do the trick & increase his hg.
:goodluck :goodluck :goodluck :goodluck :goodluck
Love,
Sharmin
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Thank you all my friends,.............
Today we started the treatment. He took the first injection. The injections are two groups, each group has three different ampules. Ahamd is supposed to take the injections one day after the other and alternating the groups. After 20 injections, he can take it once a week IV for 3-4 hours instead of injections. This sounds funny, but actually everything is wriitten in German which i haven't any idea about.
I am also giving Ahamd oral tablets and drops that are supposed to make the injections more efficent. Sorry for this vague post, but i will update you all with his CBC after the first month
Take care
Manal
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Manal,
You are a senior member of this group and indeed a very good parent. We read your posts and see the desire to try this new treatment. We see you are talking to people and trying to get an informed decision. Please update us with Ahmad's results.
Ahmad will be in our prayers.
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Manay thanks Canadian Family, every parent here tries to do the very best with the limited resources. Your words of encourgement means a lot to me :hugfriend
Manal
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Dear Manal,
I only wish you and your son the best outcome.I congratulate you for your determination and strength.My prayers and my good thought always.
All the best
Much love from Kathy :hugfriend
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ALL THE BEST DEAR MY PRAY WITH YOU AND AHMED GOD BLESS HIM ...
KHALIFA
STATE OF KUWAIT
ONE FOR ALL AND ALL FOR ONE
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Best wishes for Ahmed.
Praying for everyone :pray
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Manal,
I really wish that treatment to work for Ahmed, as it will open ways for other thals also, Good luck!
ZAINI.
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Kathy, Khalifa, Sajid and Zaini thank you soooooo much for your prayers and encourgement :hugfriend :hugfriend
Manal
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Manal,
You are a great example of a wonderful parent. Prayers for you all.
Regards
Bharat
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Manal
Best of Luck for Ahmed. I wish this treatment gives good results.
:goodluck.
Dimple.
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Hello Everyone
What i can observe after 10 days from treatment is that the yellowish look that Ahmad always had on his face is starting to change. Many times i see him''white'' not ''yellow''. At the begining i thought that i am the only one who can observe that,but what made me happy is that my mum and sister observed this too without me telling them. I too can observe that he is little more active
I asked the doctor if this could be true, he answered that it might be but can not be confirmed yet. He said that when the cells join the blood stream they start forming new cells and this may decrease hemolysis.
Anyway, i will do the CBC on 23rd of January and we will see
Much love to all of you
Manal
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Hi Manal,
It's good to hear that Ahmad is looking better. Has there been any side effects at all? Any rash or irritation around the injection site? If other patients try it they may want to know what to expect if anything. Higher Hb would lead to less hemolysis and less bilirubin, so let's hope that's what is happening. :smileblue
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Hi Andy,
Thanks for your reply and wishes :hugfriend
There hasn't been any side effects at all, everything is normal and nothing around the site of injection.
Take care
Manal
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Hi Manal,
Wishing you all the best for his CBC.
Praying for positive results :pray
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Thanks Sajid :hugfriend
manal
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Hi Manal.
I'm happy to hear the good news about our little man :cheer
keep fingers and toes cross :rotfl :rotfl
All the best. :hugfriend
Kathy
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Thank you kathy for your wishes :hugfriend
Manal
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All the best for little Ahmad Manal! I hope that this treatment works wonders!
Love,
Sharmin
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My prayers are with you and Ahmed :hugfriend
ZAINI.
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Thanks Sharmin and Zaini, i will keep you updated :hugfriend
Manal
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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
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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
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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. :hugfriend
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Thank you so much Danielle :hugfriend, 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
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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
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All the best Manal - this sounds so interesting and promising. I hope it does wonders for our little Ahmad!
Love Sharmin :goodluck :goodluck
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Thanks Sharmin :hugfriend, i hope everything would go well
Puja, you are most welcomed :hugfriend
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
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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
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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
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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
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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
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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
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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