Xcell Center Germany Journey

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hislim

New member
Autsim - Xcell Center

I have been tracking this blog for some time now, hoping that I will get some objective feedback from those who have tried the xcell center treatment. If you have personal experince with their treatement ... I seek for your feedback. Please I am "Desperate"
 
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dschroed

New member
Hi - I have had positive feedback from 3 people living in my area who took their childrenn for treatment there. 2 have cerebral palsy and 1 had a very bad car accident. All three are doing much better after treatment and said it was well worth the effort to go. They all were referred by friends of mine and not solicited by the center. In fact, none of them are listed in the patient stories. I am going in a couple months and will share my experience on this site. I want to help others as I know it is tough finding the right clinic. I know that none of them have autism, and I have MS, but I hope the general experience comments can help.
 
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barbara

Pioneer Founding member
The X-Cell site claims they have treated over 3500 patients, so the percentage of patients in the Patients Stories part of their website is very low.
If these are close, personal friends of yours and not friends you met online, then this is some good news. But if not, I would have to discount such testimonials as having no more credibility than other online testimonials.

I trust you to give us some good reports as to what you might get from the treatment so please keep a diary if you will before and after treatment. MS is getting highly treatable so I wish you all the best. Some real progress is being made I believe with it.

Hislim - An ongoing topic on this forum is X-Cell and the lack of any quality information coming out of the clinic. I have no idea if patients think this is the only clinic in the world, but the topic just keeps coming up. The fact remains, this clinic does not cooperate with groups such as ICMS, will not participate in the Ask the Doctor on our forum and engages in a brilliant marketing strategy of fancy press releases all over the internet. Patients that go there and promise to return and report their experiences usually do so for such a short period of time, that we are all left wondering what happened to them.

I do think the popularity of this clinic is the image that Germany is a country with higher standards than some other countries, the price, and as I already mentioned the total saturation of the internet with their ads. It can't be results, because they publish no papers nor conduct any clinical trials or studies that I am aware of. They are not in the ICMS patient registry either.
That leaves us with the "parents" of patients who are pleased with the results and other vague reports of a friend of a friend who went there and was "happy". That sure doesn't help me any if I was trying to choose a clinic to go to, but it must work for others because X-Cell continues to enjoy a great business based on nothing more than advertising it appears.
 
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michaelsdad00

Banned
Hislim reply.

SCT protocols,
It comes down to who you trust based on what is being done. The stem cells will either be derived from Umbilical cord blood (your own ideally) or your own stem cells either taken from skin, bone marrow (blood) or Fat (Adipose). If these stem cells are expanded in the quantity and is the quality improved by neural or other bioengineered safe growth factors to improve the quality of the transplanted cells, that would be Great! Also, one has to be comfortable with the safety of the medical delivery procedures. An injection beneath the skin, intravenous, intra arterial catheter, intrathecal (spine) or a direct implantation say directly into area to be affected such as the brain. The cost and risks involved with the safety of the handling and source of the stem cells and the medical transplant procedures are what it is all about. It would be great to see a chart with these all listed out but when you start to try and tease out what is being done and the other details it is hard to compare all of the different clinics. If there is a clinic that is expanding the quantity and quality of stem cells and delivering them the most effective way based on the condition being treated that would be ideal. In looking around now it seems that XCell may be just harvesting and reinjecting the stem cells from your bone marrow. It feels like a safe comfortable environment and they aren't charging an arm and a leg to do it.
 
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barbara

Pioneer Founding member
If that's all they are doing, if they are charging over $10000 US, then they are charging too much. Even that is being generous and assuming they have hard costs such as a hospital room, anesthesiologist and a doctor or two. Of course, other clinics overcharge as well, so I can't single X-Cell out for wanting to be very profitable. Does anyone realize how very little goes into a treatment such as Dave describes? Even paying doctors $1000 per hour doesn't justify some of the prices being handed out to us for treatments. Add on airfare, meals and hotel and it is a serious chunk of change we are paying.

Hislim - There are risks in any procedure that requires anesthesia and is invasive. X-Cell's treatment or the treatments given by other clinics that use anesthesia and extract from the marrow or do lipo are not risk free. Some scientists would argue that the treatment itself (the stem cells used) is not risk free, although I argue back that the disease I have is far riskier left untreated without stem cells than it is treated with my own stem cells. There are ZERO guarantees with stem cell therapy of any kind. If something does go wrong, you aren't going to be able to sue the doctor or the clinic. That friendly sales rep or nurse or clinic owner, will not be so kind as to even return your frantic phone calls most likely. Make sure that the anesthesia is one you can tolerate (or whoever the patient is). X-Cell is like any other clinic in the world and mistakes can happen. One patient reported he was left under anesthesia for over 3 hours for his marrow extraction at X-Cell. Take someone with you that can be the watchdog. Make sure that the marrow is processed properly. Ask a ton of questions BEFORE you go. If there is any hesitation or you can't get answers, don't go. There is no way to evaluate safety or efficacy from a website. I hope someday to see treatments become more affordable because the more comments I hear from members about X-Cell, it seems that price is one of the biggest factors.

What a shame that we are forced to go offshore, spending hard earned money to try to save and improve our lives. We go with little information, no guarantees, no opportunity to have things righted for us if something were to go wrong. We don't know if what we read is true. We don't know what kind of treatment might be best because every clinic says their treatment is the best. Can you understand why I advocate for science based studies, clinicals, and/or the use of the ICMS patient registry? Those are all tools to help us and clinics that will not and do not want to do any of these things will remain suspect to me. Believe me, it doesn't take much to ask your patients to become a part of the ICMS patient registry. At least it is a sign that a doctor or owner of a clinic believes that his own treatments have some efficacy.

I hope you have signed the petition if you feel the same about the precarious situation the FDA has put us in.

Here's the link for those that might have missed it.
http://www.thepetitionsite.com/1/PetitionforAdultStemCells/
 
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hislim

New member
Autsim - Xcell Center

I understand what you are all saying ... but the news that I am following gives so much hope that I just want to belive it. I know we are missing the scientific facts to support their (xcell) claims but that is why I am hoping to find a person with a first hand experince to what was offered to them bby xcell.
 
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barbara

Pioneer Founding member
And what I am saying is good luck with that. You won't find it on this forum. If something sounds too good to be true, it probably is. No treatment that I know of is going to work on 100% of the patients that get it 100% of the time. I'm sure that not even X-Cell would dare to boast something that outrageous. From those that actually post on this forum and from personal e-mails I receive, I am going to estimate that about 50% of patients see improvements after their first treatment. That's just a rough, unscientific estimate. Improvements also include stopping the progression of their disease. Getting nothing from the treatment or finding a company is bogus, is a risk, I'll agree. That's why I support the efforts of ICMS and their offshore directory and most importantly, the patient registry. The registry will also be of use to doctors to see what type of treatment might benefit certain diseases the most instead of just hit and miss and let's hope it works or the one type fits all that is popular at many clinics. Being sick or having a child or loved one that is sick does make us take more risks. Some companies and doctors take advantage of that.
 
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pink7

New member
XCELL treatment for Autism

hislim said:
I understand what you are all saying ... but the news that I am following gives so much hope that I just want to belive it. I know we are missing the scientific facts to support their (xcell) claims but that is why I am hoping to find a person with a first hand experince to what was offered to them bby xcell.
Click to expand...
If you are looking for some significant benefits for Autism with stem cells, it is better to look at other stem cell centers. Check Cellmedicine in Panama, they have treated lots of Autistic children.Stem cell treatment alone is not going to help the child.Biomedical treatment, HBOT, ABA and speech therapy will help the child.

All the Best
 
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barbara

Pioneer Founding member
Excellent advice Pink7. I think this is going to be true with many diseases. It is going to take a combination of therapies, not just stem cells and not just one treatment. Too many people are banking on a magic bullet. I wish this were the case, but in most cases, it just isn't going to be that way. Notice I said most. This is not a hard and fast rule by any means as there are some conditions that do respond very quickly to stem cell therapy alone.
 
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dschroed

New member
Barbara - they are personal friends who know these people. One child with CP has had siezures subside significantly after treatment. This family lives less than five miles from where I work. Xcell has more current info than Biogenisis, at least what I can see, and they are involved in clinical trials with the French with spinal chord injury (on their news page but I did veryify it is true). I am currently waiting for information from someone who works at a Central American clinic that has posted peer review literature and has performed treatments on over 200 MS patients.
 
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barbara

Pioneer Founding member
dschroed - Not sure how Biogenesis has now creeped into this discussion, but if you have information that the clinical trial for sci has actually started, will you please post it? I did see a safety study that was posted. X-Cell was criticized recently (by a group in the UK) for not having such a study, so if the criticism of this company by others can bring about much needed change, then that is a good thing in my opinion. There is absolutely NO reason with the volume of patients they get that they are not doing clinicals and studies. That is and has been my point all along.

Thank you for chiming in.
 
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hislim

New member
xcell center

I do not mean to change the subject ....
I was following, very closely, David belbin story but the last time he gave an update was last May. He was very excited about giving feedback and updates but since May he stopped. I hope this is not a bad sign of disappointment. Anyone knows anything about him and his wife and child who had the treatment at the xcell center back in Feb.
 
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barbara

Pioneer Founding member
I did a Google search for X-Cell and Dr. Kleinbloesem who started the clinic. I have put several links below for you to read through. When you finish, Google some more and you will find more of the same kind of information that I did. I did find that back in 2007, Dr. Kleinbloesem was indicating that he would be doing some clinical trials very shortly. It will soon be 2011 and I couldn't find anywhere that any trials had begun. I tried to find more on the study in Crete, but the links always come back to the X-Cell site. One of the trials is supposed to be for CP. There are mixed feelings on the boards about whether treatment did anyone any good. I did find that some patients featured in the Patient Stories were also the same ones that did a lot of posting (cheer leading I should say) on the boards. Is this a good or a bad sign? You be the judge. It is very easy to plant paid people on boards and forums. The Pioneer forum was actually victim to it once with someone from Medra.
My conclusions after reading all I could stand are that this clinic is masterful at recruiting patients, writing press releases and maintaining an image of scientific integrity when there really isn't any. The odds of seeing a few bodily functions improve with this type of therapy aren't that bad, but actually reversing disease or having an sci patient walk again, I just don't buy into it.
At least it doesn't sound like very many people are getting ill after treatment there which is a plus. Better to have treatment with zero results than to have treatment and become seriously ill from it.
As for David Belbin, I wish he would update us too. Just read through the sites I gave you and that is very common with others. They are enthused at first and then others post asking how they are doing and there is no reply leaving readers to wonder whatever happened to them. Since, X-Cell is totally unfriendly to this forum, I have no way to ask any questions of them. There is nothing in the ICMS offshore guide to help either.
As I have stated before, I would not spend any money getting treatment from this clinic.


Here is a statement from their site promising clinical studies by this year:

The XCell-Center combines clinical expertise with scientific research.
For 2009 - 2010, we plan to initiate two international clinical trials, one for Spinal Cord Injury and the other for Cerebral Palsy.

In 2009, we've commenced a study in cooperation with the University of Crete: "Stem Cells in Diabetes Mellitus Patients with Limb Amputation".

In addition to clinical trials, we also perform pre-clinical research projects
These projects involve second and third generation stem cells. Second generation stem cells will enable us to multiply mesenchymal cells (multiple treatment option). Third generation stem cells will allow us to target specific cells (multiplied targeted progenitor cells, f.e. progenitor neuro-cells).

These projects are developing in close collaboration with Neuronax and the University of Clermont Ferrand in France.

Here are some sites where others have posted their experiences.

http://tiny.cc/m9hjn

http://tiny.cc/fbxjd

http://tiny.cc/my2c2

http://tiny.cc/gc9aw

http://tiny.cc/7ixxv

http://tiny.cc/utevg
 
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dschroed

New member
Barbara - the french site I found the clinical trial information on was a posting by X-cell, so my earlier post was mistaken. I am still actively persuing treatment there at this point.
 
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PJeannine

New member
XCell Clinic

I am David Belbin's mother and went to XCell in Germany with them for ASCT for both his son (CP) and his wife (TBI). He has been in "work overload" and unable to catch up with blogging. (I have nagged him, as only a mother can). I cannot speak for him, but I can report my observations. The end of August 2010 was six months since treatment.

Both Reyna and Kenny have had significant cognitive improvements. Most apparent in Reyna as she had more problems in this area than Kenny. Her eyes are brighter and her laugh more spontaneous and appropriate with major improvement in comprehension.

Reyna's speech has improved but is still primarily limited to about 20+ most commonly used words. David is looking for a speech therapist. Her gait and use of right limbs have improved. She walks much more smoothly. She is now able to care for Kenny with only an afternoon CNA. I had been primary caregiver since Kenny's birth. This has been an amazing change in all of our lives. I am now only needed to put him on the school bus in the mornings. (Anyone want to talk about separation withdrawals? LOL).

Prior to treatment, Kenny was on Baclofen and his Ortho-surgeon said he needed a second surgery to lengthen his abductors and hamstrings with additional BOTOX/Phenol. After ASCT with reduction of his tone, his legs were weaker as he was used to the tight tone. He is slowly increasing his muscle strength and distance he can go in the walker. At this time has still not needed Baclofen, surgery, or BOTOX/Phenol. Since I am not with him during the day now, his fine motor improvement is difficult for me to determine. His OT and school Para have stated they thought the major improvement was in his behavior/concentration/attitude. Where before ASCT he was unwilling to try to do the work because he felt he couldn't do it, now he is trying more. Hard to say if this is cognitive or fine motor improvement. Possibly a little of both.

Are we disappointed in XCell and ASCT? Of course, we are human and wanted complete "cure". Are we satisfied that it was worth it? Definitely yes! Will we be going back for more? Yes, probably early next year. It is unfortunate that XCell doesn't post more trials and stats. But, this should not deter anyone from investigating treatment for themselves or those they love!

Disclaimer: All the above is only my own observations. If anyone wants to contact me.... please do. I wish everyone the best.

Grandma Jeannine Headrick
 
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