China Experiences

[bettyhelm (MS)]

I'd like to invite those of you who are Stem Cell Therapy Alumni like me to post your experiences on our website.  Our mission is to educate the public on all that is available to help them.  The more experiences we can list - the further we'll be in our mission.  Hope is a beautiful thing!

Betty

[carpathia]

Hey Betty! 
Thanks for posting about being there, I've been waiting for something  like this forum.  Is it open to reports from any treatment center?  Are the people who started this the owners of a stem cell therapycenter they are trying to advertise, and is this forum for their patients to speak?  Just curious.

There is a company call Cell Medicine which has offices in the US (to screen people) and treatment centers in South America--I think Peuerto Rico and Mexico if I remember correctly.  I looked into it some months ago, but felt it was still too new and the cost is a substantial 40k so I felt it was not worth that price until some further knowledge could be had about long term results.  I looked for a forum but never found one til today so I am glad you are here to say how things went for people trying it!

Betty I am not knowing what you have been treated for but do you anticiate needing additional treatments? Like in MS, my disease, my GUESS is that people will need a new infusion once every 6 months or something for optimal treatment of that ongoing disease.  I also believe the treated person will need good aggressive physical therapy to strengthen the new neurological pathways created so crappy walking can become a useable gait.

can you tell more about what you went through? TIA!
Carpathia

[bettyhelm (MS)]

Carpathia, I'm so glad you found the forum.  Stem Cells for Hope is a non-profit organization founded by me and my children when we returned from China.  We were so inspired.  It was truly a life changing experience for me and my children (really adults - 33 & 37).  Our mission is to let everyone know what is REALLY available out there.  We can tell everyone what we experienced and saw.  You become so close to the people there.  You are in the hospital for a month and it is a Stem Cell Ward - really like a college dorm.  You get to know your roommates because you see them twice a day in therapy and acupuncture.  You saw them when they came in and you see on a daily basis what improvements they experience.  You will see negative posts on almost any website or forum.  They are usually generalizations and have no real specifics or actual experiences.  They are not considering what it's like to have an incurable disease.  I have to bite my tongue when I read them.  I have posted on the website my blog and also interviews from my time in China.  This is MY ACTUAL EXPERIENCE.  I, too, have MS.  All I can say is that since we've started this nonprofit, six people from our area have gone to China for treatment.  All of them experienced improvements - some more than others.  It was amazing to me that so many people from different countries were there for treatment.  Every one of them said their doctors had told them not to go, that it didn't work, they were wasting there money -- and we were ALL there.  They were questioning, just like me.  From reading your post, the $40,000 price is almost twice as much as it costs in China -- and you're there for a month.  I can only imagine what it would cost here in the States.   Our website and forum is open to everyone to share their experiences.  We want to get the message out there.  There is hope -- Hope is a beatiful thing!

Take care of yourself.

Betty

P.S.  If my symptoms return, I would go back in a heartbeat.

[carpathia]

Ok Thanks Betty for starting the forum.

Tell me more about your MS and what got better.  How were you before and how are you now?  I am SPMS I use a cane all the time and a electric cart in the mall and there is nothing for me at this point really.  And frankly they do not know what MS is that's what drives me bats! 

It seems to me that the idea of stem cells is nothing new. They've been giving them to people after killing off the immune system for people with certain kinds of cancer for years.  Stem cells do not cause cancer and are perfectly safe with this long track record.  They even do it to kids for crying out loud.  The problem is that the hospitals here that already do cancer treatments could do stem cells treatment for MS tomorrow if it was FDA approved, but that will not happen because who will pay for the exhorbitant research to get that approval?  Certainly if everyone can do it the person who did the research stands to gain exactly nothing but .  IMHO this is what the NIH should be for: to pay for promising research that has little financial incentive to pay for its own research

I have no idea how long a person would stay in the hospital in the South American center I mentioned, I did not get that far.  I watched the videos on treatment and how stem cells work (they are great videos you might link them somewhere here) then emailed and got the feedback of how much the treatment would be.  My treatment was going to be complicated by the fact that I have rheumatoid arthritis too, so I need two types of treatment (mesenchymal stems and erythropoietic) the 40k included both.  My guess is that perhaps the travel would be less expensive than it would be to china but I do not know that.

Some years ago I saw email letters on the net by some people who'd had cord blood stem cells that had MS.  The center that was doing that was shut down by the FDA apparently I read in the newspaper.  I have wondered what happened to the people who'd tried it as time went by and wished they'd  in the limelight.  I would like to know if they eventually needed another treatment or what.  I'll say it again I expect people will need treatment on a repeat basis if they have something like MS.

Thanks for starting this forum Betty!  I am looking foward to other people's feedback, and I am glad this is not just for one center.  I heard there are centers in Holland and some in Thailand also.  The national geo movie about the Chinese place looked good too!
carpathia

[bettyhelm (MS)]

Carpathia,

Some patients have both mesenchymal stems and erythropoietic cells in their treatment.  The mesenchymal cells are from your own bone marrow.  A sample is collected when you arrive at the hospital and then it is sent off to a laboratory to grow the cells.  This was not available when I went for the treatment, but it is now.  I would have had it if it were available at the time. 

As far as my symptoms:

I went to China for a month - from mid-May until mid-June.  I know this is a personal decision that each individual has to make on their own.  I can tell you why I decided to go, what my symptoms were at the time of treatment, and what results I experienced. 
 
Why:  I felt I was getting worse and that I would have better results if I went earlier in my disease rather than later.  Also, I could not see waiting years, if at all, for the politics to be resolved so I could have hopes of living a full life.

Symptoms Before Treatment:  I was diagnosed with relapse-remitting MS in 2000.  It affects me mostly on my right side.  I can not walk long distances without my leg getting numb, my knee giving out, & my foot dropping.  This caused me to trip/fall a lot.  I also had optic nerve damage and double vision.  I have no tolerance for heat.  It just devastates me.  It seemed that with each  year, I had less and less stamina.  I felt like I was in a fog, just observing everything around me but not being actually involved in it.  Even though this is hard for most people to understand, it probably makes sense to you.  I don't think you can identify with it unless you've experienced it.

Results from Treatment:  I can feel the right side of my forehead and face.  My right side feels just like my left side.  I have no double vision.  I definitely have much more stamina and do not have a problem with walking and balance.  When I first started treatment, the doctors were having to stand behind me to catch me when I was exercising on the steps in rehab because I was so wobbly.  I can now walk with one foot in front of the other, both frontwards and backwards, go up and down steps, both frontwards and backwards, without any concern.  Before I had to really think about each step when I was walking - now I just walk.  I feel almost like a normal person (if there is such a thing).  As far as how long this will last - they really don't know.  Dr. Hu said he had been following an MS patient for 1 1/2 years and he still had maintained the results.  It may be just the luck of the draw.  But, I feel hope is a wonderful thing and this at least gives you a sense of some control over the situation.  A positive attitude is definitely a big plus.

Hope this answers some of your questions.

Betty

[carpathia]

Thanks Betty,
May to June of THIS year? You've been back for a month?  You are doing well to have this forum up in that amount of time 

Yes I understand completely the fog you talk about.  Mine was significantly relieved with antibiotic treatment, though I have progressed in spite of that in terms of motor function.  I envy you your walking up stairs forward and backward.  I use a cane because I also have a drop foot on the right as well as not being able to bend that leg well: it is stiff all the time and seems to be constantly like a log on my body that I have to drag about.  I am most interested in how you do over time and how others do over time. I look forward to your ongoing input
thanks!

[bettyhelm (MS)]

I went in May 2007 so it's been over a year now.

[Jillsgym MSA-C]

Hi Betty
We went to China in June 2006 for stem cell therapy. My wife Jill suffers from MSA (Multiple System Atrophy). The MSA had affected her speech, balance and fine motor skills. She was a school teacher (primary) and after having trouble with writing on the black board, a couple of falls at school - she was given leave and was diagnosed with stress(2002).Following several more falls and a broken arm, she was diagnosed with sparodic cerebella ataxia which was later changed to MSA.(2004). Prior to going to China Jill's speech was slured, walking was limited around the house and her writing was getting smaller and more difficult to read. Jill recieved 6 stem cell injections (4 Lumber and 2IV)in Nanshan Shenzhen. Following the month in China there were some small improvments - major as far as we were concerned. The slur was gone but still quiet, writing improved (writing shopping lists) and walking 20 meters unaided. Over the next 2 months we established a gym in our garage with the same equipment Jill had used in China including a Vocastim voice stimulator. Every thing was great ; further improvemnts in her walking - up to 500 meters unaided. Unfortunately in October she had a fall and fractured her sacrum and spent the next 5 weeks in hospital ( discovered she had osteoporosis)and has not regained the ability to walk unaided. She uses the wheelie walker around the house and the crutches when we have a level open area to walk.We have continued to exercise daily and keep looking on the net for any future treatments. She has attended a Parkinson speech clinic and I was amazed at the volume and clarity she achieved , we alternate  the speech exercises and the vocasim unit every second day. We practice walking at the local net ball courts - which are level and she is ablle to walk with the crutches aproximately 500 meters.
We are currently making arangements to return to China - Hangzhou for the next treatment. We  late September - October. Jill's speech has remained much as it was when we returned from China and she still writes the shopping lists. Emotionally she does not handle the MSA - she doesn't like going out or having visitors - embarased by her speech and having to use the wheelie walker or crutches. I believe that the stem cells and the exercise regime establised in China have given us the chance to keep going with HOPE .

[bettyhelm (MS)]

I'm so happy that Jill got such good results.  It's so unfortunate that she suffered a setback.  It sounds like the symptoms of MSA are quite similar to those of MS.  I was in Shezhen also.  Since I came back there have been six others from Baton Rouge who have gone.  I am going to post their patient experiences on this site so we can follow the progress.  I know it's hard to keep a positive attitude and live as normal a life as you can, but Jill, you have to keep trying.  Things do get better - and there is HOPE. 

Betty

[bettyhelm (MS)]

Hi,

Wanted to let you know that our website is growing.  We have added a form that you can complete online to share Jill's patient experience.  Just click on the Patient Experience tab and scroll down and click submit your form here.  At the bottom of the form, under the submit button, you can also register for our photo gallery.  Here, you can upload any pictures that you want to include with your story.  This will help our community grow closer.  It's nice to put a face with the name.

Hope Jill is doing fine -- keep posting.  We need to spread the word that there is HOPE!

Betty

[Christine]

 Everyone,

Great Betty, I'm really glad the site is up & running. I, too, have been to China and had a stem cell treatment. It was an incredible experience that changed my life, it gave it back  to me because I was slowly watching my life fade away., There is SO much information out there, a lot of it negative or downright scary, it's hard to know what to believe...
This forum is a place where we can all communicate, ask questions, exchange information and generate hope. Bravo...I look forward to looking at all the post & "talking" again soon...

Best Wishes, Christine
 

[bettyhelm (MS)]

Christine,

So glad you've seen our website.  it is really starting to grow. 

You can post your Patient Experience about China.  We encourage people to do this so everyone can share in their experience.  If you click on Patient Experience and scroll down, you'll see where you can submit your experience.  This is a form that you fill out online.  You can also register and add photos to the gallery that you want to include with your story.

When you have a chance check out the video on the website.  It's "Supercell", a National Geographic  that they are not showing in the United States.  It's very good.  The interview with David in China is also very inspirational. 

Hope you're doing well.  Great to hear from you.

Betty