Wednesday, January 13, 2010

Some Answers

To answer some questions from my last post, yes, I would return to China for more treatment if I could afford it. However, I spent about $50,000 - when all was said and done - for my treatment, and will not be in a position to do that again for a number of years unless I try fundraising.

For more information about the stem cell treatment I had through Bieke Biotech, check out their site at: http://www.beikebiotech.com/

18 comments:

  1. Hi Russ,
    I see the treatment is quite expensive, but if you would repeat when possible means you have had good results for you.
    Do you think you are now as you were as a few years ago in terms of the strength of your muscles?
    Receive all my support.
    All the best
    Daniel

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  2. Daniel,
    I actually think I am doing a bit better than I was before going to China - at least from an exercise standpoint. I can still exercise much longer than I could before, and the 3 inches I gained in my legs remains the same.

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  3. Hi Russ:

    Thanks for keeping this blog. I'm a girl of 25 years of age and was diagnosed with FSHD 3 years ago. I cried after I watched your video on StemCellChina. Although my doctor has been telling me stem cell will be available in 5-10 years time (i'm in Australia), I was surprised to know it was already that developed in China. Is this because it's illegal in USA so you have to resort to other countries?

    Thank you again for the blog. I know how frustrating it is to have the disease, but never give up. Not sure if you've read the book 'The last lecture', it's a book of magical power that has helped me when times are hard. Life's too precious, we can not change the cards we are dealt, only how we play the hand...

    http://www.youtube.com/watch?v=R9ya9BXClRw

    You can also purchase the book from:
    www.BookDepository.co.uk

    it's the cheapest there, with free world wide shipping

    All the best with your exercise and recovery Russ!

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  4. Christy,
    Yes, umbilical cord stem cell treatment is illegal in the US and Canada. I chose China over other countries because Beike's program offered more stem cells in a safer environment for a better price.
    I'll check that book out. Thank you.

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  5. Hi Russ,
    I am 38 years old, and was diagnosed with FSHD when I was 18.
    I would like to ask you about the secondary effects on your treatment in China, are there any?,
    thanks, and keep on!
    MarĂ­a

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  6. Maria,
    "Secondary effects"? Do you mean side-affects? If so, I did not experience any side affects. Well, there was a little bit of pain where I was injected, but that did not last more than 30 minutes or so.

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  7. hi russ,iam susan,47 years old and 5th member of 10 children in the family that was affected by this muscular dystrophy disease,2 have died already and my other 2 sisters have already lost interest in infinding treatments but since i got this computer last month and read about this stem cell and saw your blogs bout your treatments i became very interested although im not sure if i can come up with what you had estimated as your expenses and the possibility of returning again for further treatment but never the less i still want to be friend to you and allow up your improvements,actually russ i dont know what type of muscular dystrophy we got because the doctor who had treated us way back 1985 says that its a kind of muscular dystrophy and when they told us that its an incurable disease and still a under research study case so we lost our hopes but when i came to your testimonies bout your treatment my hopes came back.russ,tell me honestly, do you think that stem cell really the answer or our illness,right now iam only in sitting position,with immobile legs,completely invalid,even my arms is bieng afected.i am from the philippines and thanks for your time,by now i will be an anonymous but next time i will send you my email address.thans russ and hope to hear from you,GODspeed

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  8. Susan,
    I'm sorry to hear about your family members but can relate.
    No, at this time I do not think stem cell treatment has come far enough to be the "answer to our illness." I think it eventually will, but not yet.
    I seemed to have reached a plateau from my treatment. I don't seem to be getting any stronger, but have not lost what I feel I gained, either.
    Feel free to send me you email address and I'll be happy to answer your questions in more detail.

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  9. Hi Russ,

    Your blog is inspirational. I don't want to lose my ability to walk so I would seriously consider this. Of course the problem is the cost since insurance does not cover this. Any thoughts about this treatment I found in California which is bone marrow stem cell transplants from your own hip bone?? www.stemcell.md The stem cells seem to be given back to the donor by IV therapy. Seems different than your injections right into your muscle correct?

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  10. Cathy,
    Thank you. I did a bit or research on the bone marrow transplant before going to China, and actually had this type of treatment while there. They put me under then punched a long needle into my hip (just below a kidney)bone and extracted the marrow. Then they treated it with what they called a Nerve Growth Factor then re-introduced it about a week later into my system via an IV. I really cannot tell you whether it did anything. If there is ever a next time for stem cell treatment, I will forego the bone marrow and spend the $5,000 its costs on more bags of cells.

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  11. hi, russ
    how are you?hope your doing fine..i read about your story, im from philippines..my brother was diagnosed last 2007 that he has a muscular dystrophy and the doctor said its incurable.At his age of 7 he can't walk already, at this time his other parts of the body does not function well like his arms are affected.do you think if we do the stem cell treatment, he will be able to walk and live a normal life?hope you will answer my question and give some words of hope..thank you and god bless!!=)

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  12. Belle,

    Unfortunately, I cannot tell you for certain whether stem cell treatment will help your brother. Everybody is so different and each will have his/her unique response to the treatment. I only know for me, it worked to a point then leveled off.
    You might want to contact Beike Biotech and ask them about it. They would need to know what type of MD he has. I wish you and your family well.

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  13. Hi Russ,
    I can´t tell you how much my husband and I appreciate your blog. He has myotonia MD and we had been looking into stem cell treatment options when we came across your blog. It has been very helpful in helping us decide whether we should choose treatment in China or India.
    My husband has myotonia MD and at 58 is still in fairly good shape. Was the total cost of your trip and treatment $50.000? Would additional cell bags cost another $5,000 in China? We are confused about the cost of the first treatment vs. the cost of the additional cell bags. Please keep posting your results.
    If all goes well, we will do the same.

    Veronica and Johannes
    Berlin, Germany

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  14. Veronica and Johannes,

    Yes, the total amount for my trip was about $50,000. And this includes the costs related to Jason, the caregiver all patients are required to bring. I paid for his visa, passport, travel, and food, plus I paid him for his unpaid time off work for the trip.

    I believe each additional bag of stem cells was $3,500. I had another 2 bags of cells injected into muscle groups just before we left. This was over and above what Beike said was necessary, but I wanted to have the best chance for results. All totalled I had 8 bags of cells.

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  15. hi russ,its me susan from the Philippines and thanks for your reply with that 1st letter i sent you.your right and by reading this several letters from many people asking you many questions and some are my own questions that i ws planning to asked you.yes your right that maybe this stem cell treatment is not 100% answer for our illness and its hard to tell if this stem cell had the same result for different illness but never the less at least we have this hope and you are the proof,right?patients like me will always appreciate what little hope this treatment can give us.Russ how many days are you confined in that hospital in china?and after getting this treatment and you will be sent home,are there no fallow up check ups from the doctors?who will decide if you need to go back or not to go back there in case there are some abnormal or bad effect of what they had inject?and do you think the age of the patients and the long years of the disease in a person does not have an effect when taking this treatment? Iam asking you this because i had observed that all hospitals abroad doing this treatment just give you online applications and does not answer some questions,you know the many WHY"s before trying.forgive me Russ coz i am a woman with little knowledge bout this matter.THANKS again and will be waiting for your answers for mthis questions i have.Be patient with me Russ but you just dont know you are ONE of those making me strong emotionally to keep on going.i dont have anything to give you back for your time except MY PPRAYERS that you will get cured completly,GOD bless us all.

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  16. I was not really “confined” to the hospital while in China. Five days a week I had physical therapy, and twice a week some sort of stem cell treatment. Otherwise, I could leave anytime. I was there for 5 weeks.

    Beike follows you via email when you return. They also telephoned me several times to check up. They now have someone who spends all their time following up with patients. Otherwise, I follow up with my regular doctor here in Oregon.

    Nobody decides when or if you return. It’s up to you and your wallet! The did not tell me I had to come back for more treatment, but if I wanted to it could be no more than once a year. I had no bad side effects, and nothing abnormal has happened to me.

    Definitely age and the progression of a patient’s disease will make a huge difference with stem cell therapy. The younger you are and the better off you are physically, the better your changes are for positive results from the treatment.

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  17. HI RUSS,THANKS AGAIN FOR RESPONDING AND ANSWERING ALL MY QUESTIONS.I JUST HOPE THAT I CAN COME UP WITH THAT AMT YOU HAS SPENT FOR THIS STEMCELL TREATMENT,ITS VERY EXPENSIVE BUT ITS ONE OF THE WAY I CAN ALSO IMPROVED MY LIFE,A HOPE THAT EVERY SICK PEOPLE WANTS TO TRY.WE WILL ALWAYS INCLUDE YOU IN OUR PRAYER AND PRAY ALSO THAT I WILL BE ABLE TO RAISE THIS AMT FOR MY PLAN OF GOING TO CHINA TOO.PLEASE DONT GET FED UP BECAUSE I WILL ALWAYS WRITE TO YOU TO HEAR NEW DEVELOPMENT OF YOUR CASE AND TO ASK YOU MORE QUESTIONS THAT I WANT TO CLEAR....THANKS RUSS.GODS SPEED.susan fr Philippines

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  18. Stemcell treatment Germany are a type of intervention strategy that introduces new cells into damaged tissue in order to treat disease or injury. Many medical researchers believe that stem cell treatments have the potential to change the face of human disease and alleviate suffering.[1] The ability of stem cells to self-renew and give rise to subsequent generations with variable degrees of differentiation capacities,[2] offers significant potential for generation of tissues that can potentially replace diseased and damaged areas in the body, with minimal risk of rejection and side effects.

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