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If you are reached this page via the main page then probably you are wondering what has stem cells to do with Dynamics Ax. Well! Nothing. We delivered stem cell transplant to my daughter in Germany in May 2006 and since then a lot of people have been asking me about stem cells. It is becoming quite a job to keep track of the information available and then to inform everyone once I have some new information. To avoid this I am constructing this webpage. If you know anyone who will be benefited from stem cells then please do pass on this webpage reference.

 

I must make it clear that at this point of time we do not see any difference in my daughter however stem cells is still a mystery. They work for some people and for some people they don’t.

 

This webpage is meant for people who need stem cell transplant due to brain related disorder or injuries. For spinal chord related information please visit www.carecure.org

If you are looking for stem cell treatment for Heart, Cancer or Eye there are thousands of hospitals delivering such treatments everywhere including USA. (It is rather funny to imply that a treatment must be fairly routine and common since it is being delivered in USA *lol* US government has made a big blunder with stem cells and I hope they reverse their decision as early as possible).

Over the last few months my search has taken me (in cyberspace) to a lot of countries and I have spoken with a lot of people. Ukraine, Russia, India, China, Mexico, Turkey, UK, Netherlands, Denmark, Sweden, USA …..

 

I am constructing this webpage so that if anyone is searching for information for stem cell transplant they will be benefited from this information that I have already compiled.

 

Let me be very frank, for disorders such as cerebral palsy or Autism, stem cells is the only hope. You may hear of treatments available like homeopathy, naturopathy bla!bla!bla! delivered by doctors that claim to have a great success, take it with a bucket of salt. If these guys have really cured someone then most probably there was a misdiagnosis to being with.

 

However, some results may be obtained by medications like Eldopa, Levedopa or therapies like Oxygen therapy.

 

This brings me to my first advice. If you are planning to do anything with stem cells then the first step is to do a MRI scan. When I started digging into cerebral palsy, I came across a host of disorders that have similar symptoms as in Cerebral Palsy. There are a huge number of cases that was a misdiagnosis as cerebral palsy (and went untreated for along time) even though medication is already available for such disorders.

 

MRI scan is the only technique available that will confirm the exact damage. However, it may be a good idea to check out whether the patient also has some metabolic disease that is leading to some complications in the brain. In fact if you approach any facility for stem cell transplant then they will ask you for a copy of the MRI scan. (If they do not ask you for this report then run away as fast as possible).

 

At this point of time you will start encountering resistance and confusing opinions. Firstly you may meet people who object to stem cell treatment based on moral grounds. Ignore these people. One can afford to do tree hugging if one does not have any problems.

 

Next you will hear from people especially doctors who will make you feel guilty even because you are thinking of stem cell treatment. They will in-directly say that it is quite irresponsible for you to deliver an unproven treatment to your child (or a family member). Ignore such people, till date I have not come across a single instance where stem cell treatment resulted into worsening of symptoms or death for that matter. In fact stem cell treatment is being delivered in Ukraine for more than 10 years. More about this later. However, make sure that when a hospital says they are injecting stem cells then they are really injecting stem cells. There were a couple of cases in Russia where people were injected with something else and developed severe complications.

 

So you are wondering what stem cell is?

A stem cell is a special kind of cell that has the unique capacity to develop into the specialized cells that make up the tissues and organs of the body, such as heart cells, nerve cells and even inner ear hair cells.

Stem cells have another unique gift. They get attracted to the place of injury. You can inject them anywhere and they will travel to the place of injury and can replicate and grow themselves into specialized cells to fix the injured part. Amazing!

At this point of time it might be worthwhile to trace the history of stem cells. You may find this very interesting and very surprising.

The Stem cell research originated and started in ‘Institute for problems in Cryobiology and Cryomedicine’ in Kharkiv (Ukraine). During the cold war these guys were researching as to how to preserve human bodies so that the same could be reanimated 500-1000 years later (if you search the web you still have facilities in this part of the world that offer to preserve your body after death). After the Chernobyl disaster their focus shifted to tissue re-engineering and human DNA. This is where they hit upon the stem cells. This institute has been giving the stem cell therapy for the last 10+ years. There is just one problem.. They don’t read their emails every day (most likely once every 15 days) and they do not speak a word of English. So you have to know Ukrainian or Russian to talk to them.

http://regenmd.com/ab_cryobiology.htm
http://www.cryo.org.ua/ipk_eng/home_e.html
http://www.users.itl.net.ua/ipcc/

It is really a shame that these people are not getting any credit just because they do not speak English and they are not making any efforts to publish their research in English language.

Incidentally, a lot of places that deliver stem cell transplant have websites that are really hard to navigate. Don’t be put off by such websites.

So take up on our history again….

From Ukraine the stem cells spread to Russia. In Russia the focus is more on beauty therapy. There are a huge number of facilities in Russia that deliver stem cell transplant to make you look younger. As said above some of such institutes are not reputed and one may get injected with anything under the sun in the name of stem cells.

From Russia the knowledge spread to South America. There are a lot of places like for e.g. Barbados where a patient can fly in from USA and can get stem cell transplant. Most of such places have Russian doctors for obvious reasons.

From Russia the knowledge spread to a lot of countries and stem cell has become medical tourism for such countries. Do not be surprised if you inquire about stem cells and get reply like this

“Since 2001, XXXX has treated over 125 patients with adult neural stem cells, fetal stem cells, and umbilical cord stem cells. In general, XXXX has found that umbilical cord stem cells are most effective and tested but some people prefer to have fetal stem cells. If patients prefer to have fetal stem cells, they must tell us in advance that they would like fetal stem cells and they will be prepared.”

*lol* Needless to say I ran away from these guys as fast as possible.

But I am jumping ahead of myself. Let me first explain the different sources of stem cells.

So where do you get stem cells from?

Basically there are 4 sources of stem cells:

1.      Brain stem cells.

2.      Aborted fetus

3.      Umbilical chord

4.      Autologous stem cells

Brain stem cells: Researches in Sweden have successfully simulated stem cells in the brain itself. Unfortunately this discovery is at least 2-3 years away from developing into any kind of a treatment of humans.

Before discussing the other sources let me quickly explain how stem cells are delivered. Though stem cells are very basic cells and do not have any identification there is always a big risk that our body may reject the stem cells. This will result into serious complications. This is positively a risk when stem cells are being delivered for brain.

It may be worthwhile to know that we have something called blood-brain barrier that guards our brain from any foreign unacceptable object. It seems that this barrier is somewhere at the bottom of the spinal chord. After crossing this barrier the stem cells get into the spinal fluid to reach the damaged part of the brain. Typically foreign stem cells are delivered before this barrier via intra-venous injection so that this barrier stops problematic stem cells. Obvious problem with this treatment is it is very hard for stem cells to cross this barrier and reach the brain. The advantage is that a patient can be given huge amount of stem cells.

On the other hand a patient’s own stem cells can be given directly by-passing the barrier. Either they can be delivered at the place of damage by brain surgery, which is rather risky, or they can be injected in spinal fluid. Since the cells are being injected in spinal fluid they have more chances of reaching the damaged part however there is a disadvantage, there is a limit on quantity that one can inject directly in spinal fluid.

Another problem with all the treatment is that if stem cells are kept too long then they may have cancerous growth.

So getting back to stem cell source:

Autologous stem cells are patient’s own stem cells. As far as I know there is only one facility delivering this treatment and this is the one that we chose for my daughter. www.cells4health.com. Under this procedure stem cells are extracted from the bone-marrow (in hips). This facility claims to have its own procedure for extracting the ideal stem cells, which takes about a week (please note that the stem cells are not cultivated since it is illegal to do that in Europe). After a week the same stem cells are injected back into the patients spinal fluid (by passing the blood-brain barrier).

Fetal stem cells are sourced from aborted fetus and umbilical chord stem cells are sourced from discarded umbilical chords. Such stem cells are always delivered intravenous due to reasons mentioned above.

So now you know a bit more about stem cells. So where is the research going on?

It seems that UK is leading in stem cell research however no one in UK commercially delivers stem cell treatment to humans as of today. However stem cell clinical trials on humans are going on in UK. In fact stem cells trials on humans are also being conducted everywhere in Europe. I know as a fact that such trials are going on at least in Denmark.

Another place that is conducting a lot of research is Israel.

Another big surprise is Saudi Arabia. I heard a few months back that the Saudi Arabian government is investing heavily in stem cell research. In spite of trying hard I could not get any further information. If you get something then please do let me know and I will update this page.

There are a few places in India that deliver stem cells transplant but the only worthwhile place where research is going on is Reliance Laboratories. However, they are 2-3 years away from commercial offerings.

However, if someone is offering stem cell transplant without doing any research, that should not put you off as long as you are getting umbilical stem cells. With stem cells right now the position seems to be that you inject the stem cells and hope to get some results. Having said that I suspect that there is may be some benefit in trying out the clinics in South America (details below) and the one in Ukraine. These facilities are giving stem cell treatment for a long long time and have some idea as to what is going on.

Having said that I must say that I selected cells4health for a specific reason. If something had gone wrong for any of their patients in the past then it would have been out in the media. They would not be able to hide such a thing. I am not going to elaborate on this, so bear in mind this factor.

Some facilities that I found to be genuine are listed below. Note that when I mean genuine I mean that when they say they are delivering stem cells then they are really delivering stem cells. You will have to choose the institute depending upon your own gut feeling and the size of your pocket. The cost of treatment will vary from USD 10000 to USD 25000 plus traveling.

The contact details for the institute in Ukraine are mentioned above. The phone number on the website has changed to 38(057) 373-41-43

www.cells4health.com

www.regenmd.com

www.emcell.com

http://www.medra.com/

For India search on the web, unfortunately when I talked to people over phone, I forgot to take down their web page details. The institutes are in Pune, Bombay, Chennai, Bangalore and Delhi. You may actually get the contact details after searching on www.carecure.org

For China I came across www.stemcellchina.com

There is quite a bit of authentic research going on in South Korea unfortunately I have lost the contact details.

Don’t be surprised but it may be worthwhile to check out http://www.clinicaltrials.gov/ regularly for stem cell trials in USA.

I came across facilities in Mexico and Turkey, unfortunately by that time I had decided upon cells4health and did not go into the details.

 

Other than the above I encountered at least 10 more hospitals that looked  promising but by now I have lost the details. If you know of any reliable hospital that is not listed above then please do let me know.

 

Last but not the least… Stem cell treatment is an expensive affair. Go into it with open pocket and no expectations. It may work for you it may not. It seems it has not worked for my child but there is always a possibility that it may start working tomorrow. After all where would a mankind be without the ability to hope.

 

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Update : 13th September 2007

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Well, a lot of things have happened since we gave stem cell transplant to my daughter.

There were some small to medium regressions in the next 6 months or so.

She had a severe regression in the month of Aug 07. The things were so bad that she could not even get up from the bed. Her progress was completely reversed.

We thought that the regression had something to do with another medication prescribed by a pediatrist. She was given Isoniazed along with her usual medication of levodopa + carbidopa. Worse! isoniazed was given as an un-necessary precaution. 

Our pediatric neurologist (not the one who presribed Isoniazed) decided to do a MRI scan to make sure that there is no long term damage.

Meanwhile we stopped the medication and my daughter started improving. She bounced back to what she was and even more.

And we received the MRI scan results..Normal examination with no cause for developmental delay/dystonia identified. 

The past MRI scan that we did in January 2006 read as follows:

MR scanning of the cerebral in Gray’s anatomy shows the overall structure is normal. Ventriculer system is lightly built and positioned in the middle and there are no suspected tumors or traumatic alterations. However, there are some very small variances located along the rear boundary of the putamen and it reaches a little way down in the subthalamic nucleus. You can see on both sides very small striated hyper-intensity. According to the books you can see this with Methylmalonic Acidemia in a chronic stage. Other alternative diagnoses are kernicterus and lack of oxygen. Other metabolic changes are also possible.

 

Conclusion: Bilateral striated hyperintensity in the rear globus pallidus which reached down in the subthalamic nucleus, most likely metabolic illness.

Her stem cell transplant was done in May 2006.

You can see the results of the latest MRI scan here. Part I and Part II 

(you will have to download the files to view the contents).

The bottom line of the result is : Normal examination with no cause for developmental delay/dystonia identified. 

She is completely recovered from her brain damage.

Of course she is no where near normal yet. But her motor skills have improved a lot in the last one year. Her vocalization has also improved dramatically in the last one week.

We are hoping that her progress continues now that she has recovered from her brain-injuries.

Now the doctors have asked me to get disk images of her scan from Denmark. Tough job, hopefully I will get them in a month or so. Next job will be to compare the images and figure out whether the recovery is from stem cells transplant or normal growth. Doctors are also trying to figure out if there is anything else that is wrong with her. 

So did the stem cells work? We don't know. All we know that within an year after being given the stem cell transplant her injuries have completely disappeared.*s*

We are still waiting for an apology from the doctor who prescribed Isoniazed. The only excuse we have been offered is  she has never in the past given treatment to children with cerebral palsy.

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I have received a copy of her MRI scan from Denmark. I have burned an image using Nero that can be downloaded over here. The image also contains a viewer.

PLEASE DO DOWNLOAD IF YOU KNOW HOW TO READ THE IMAGES. PLEASE DO NOT DOWNLOAD JUST FOR CURIOSITY. THIS FILE IS 70 MB AND I PAYING FOR THE BAND-WIDTH. APPRECIATE YOUR CO-OPERATION.

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Update : 15th October 2007

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She can climb up a step without falling down. In the past she did not know when to stop eating but now her appetite is normal. Her food intake is comparable to someone who is of her age.

Her teachers in Sherwod Forest school are doing an amazing job with her.

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Update : 21st October 2008

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It has been an year since I posted any update. My daughters school report tells us that she can now understand number and is moving on to alphabets. At home life is a bit easier since she can understand most of the physical objects and what we are telling her for e.g. stand near the freeze or stand against the wall, get your shoes etc. One thing I cannot understand is how does she understand "go to the right side" since "right" is not a physical object.

A lot of people have asked me for further explanation of stem cell transplant and here it goes.

Stem cells as we understand them are not the ones that are injected under autologous treatment. We have basic stem cells that are attached to a bone, these stem cells can convert into anything. Then we have trainee stem cells for e.g. trainee stem cells for skin , trainee stem cells for neurons, trainee stem cells for blood etc etc. These stem cells evolve from the basic stem cells that are attached to our bone and as the name suggests these stem cells are on their way to be specialized. What autologous stem cell transplant does is to pick up such "Trainee" stem-cells and inject them in the spinal fluid.

There is a lot of material out there on stem cells but it is important to note that the basic stem cells that are attached to our bone have an outer limit on the number of times they can reproduce to create "Trainee stem cells". My completely un-informed/un-scientific opinion is that for this reason older people should go for fetal stem cell transplant.

However, there is enough evidence to suggest that stem cells carry certain types of cancer gene. So be very sure of the source of the fetus from which stem cells were extracted. If someone has terminated pregnancy due to medical problems with fetus, you don't want to inherit such issues.

That's is for now. Drop me an email if you have questions.

 

Send mail to harry@systomatics.com with questions or comments about this web site.
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