Post #5 Impressions Re: Stem Cell Therapies & XCell-Center

We have done a significant amount of web-based searching for any information related to stem cell research and treatments that might be applied to patients with degenerative neurological diseases. Our purpose in this post is simply to share summaries of what we have found and experienced, not to try to influence you in your own search for answers.

Research that has reached the clinical trials stages appears to be non-existent, or at best in its initial stages (there is one clinical trial for ALS that was recently started in the U.S.). We did not uncover any research world-wide that seemed to warrant stem cell treatments at this time for degenerative neurological diseases, at least by standards recognized by Western Medicine.

Nevertheless, there are stem cell treatments being offered in various countries that are claiming varying degrees of success, including treatments for degenerative neurological diseases. The two primary countries involved in such treatments appear to be China and Germany. We wrote to the institutions in both China & Germany, eventually focusing more on XCell-Center in Germany.

Since there is no known cause or treatment for MSA-C, stem cell therapy appeared to provide the only HOPE left for at least slowing the disease, thereby buying some time in the event other treatments surfaced in the future.

Our primary efforts focused on gathering some type of evidence (statistical and/or anecdotal) from XCell-Center that their treatments of patients with degenerative neurological diseases were at least to some degree effective. Unfortunately, no written statistical evidence was available, and any anecdotal evidence they claimed was not verifiable. Any e-mails or phone numbers they provided were left unanswered when contact was attempted.

I spoke with two of XCell-Center's neurologists, one before going to Germany and the other while we were at the Center, and though both claimed results had been observed, which gave one HOPE, neither could quantify those claims with any statistical or consistent and verifiable anecdotal evidence. One of the neurologists even suggested it was administration's role and responsibility to verify evidence of effectiveness, while his role and responsibility was only to carry out the procedures. Fair enough--it's up to each of us to decide whether we agree with him in that regard or not.

Administration, on the other hand, did admit it was their responsibility to gather and disseminate statistical information regarding results, and that they were in the process of doing that. However, the questions he asked Mariko before the procedure that were supposedly to be used for that purpose appeared to be too scanty and superficial to accomplish any valid statistical purpose. Though I may not fully understand their reporting methodology, it appears they will continue to depend on each patient's voluntary return of a questionnaire they provide for any statistical summary of results. If they agree to share that information, regardless of methodology issues, it will be a welcome improvement.

While the procedures performed, considering the lack of research and clinical studies, would likely not be acceptable under most Western Medicine standards, it is always possible that those at XCell-Center and other stem cell centers around the world have discovered something that will benefit patients who are otherwise without hope of any known treatment. However, if that is true, one would hope that they would become more willing to share statistical information about the efficacy of their treatments with those who ask for it.

In addition, the anecdotal information from blogs should offer some degree of evidence regarding the success of stem cell therapies. Unfortunately, most blogs that were being written by the patient or a family member don't seem to be continued, and though there seems to be enthusiasm initially by those having stem cell treatments, the majority quit writing after a few months, without much continued positive information regarding the benefits of the treatments.

Meanwhile, we do remain hopeful that the stem cell treatment Mariko received will be beneficial. As mentioned before, we will continue to periodically post and to share information we gather with you. We will try to make the next post not later than the first week of March.

Post #4 XCell-Center Treatment on Feb 4, 2010

At this time we would like to continue sharing our research and experiences related to stem cell treatments with you. This post will describe Mariko's recent stem cell treatment, while the next one will focus on our research regarding stem cell treatments in general, as well as more specific information and impressions regarding XCell-Center in Germany.

Mariko received a stem cell treatment at XCell-Center in Germany on February 4th. Bone marrow was collected on February 2nd, after which the stem cells were isolated from the bone marrow and subsequently implanted on February 4th into the cerebro-spinal fluid by lumbar puncture. Over 4 million stem cells were harvested with a vitality in excess of 90 per cent. The theory is that since the cerebro-spinal fluid circulates, the implanted stem cells are transported directly to the damaged tissue in the brain.

The procedure went well, without incident. However, there were some unexpected side-effects. Although the headache was avoided that sometimes, reportedly, accompanies the treatment, she did experience severe discomfort (severe enough to be considered pain) in the legs and buttocks for 2-3 days. And although the leg discomfort subsided after about the 3rd day, there is still some discomfort in the area of the buttocks (especially when she bends over), almost one week after treatment.

Reportedly, the beneficial effects of the treatment will likely not be felt until sometime during the 2nd or 3rd month following the stem cell implantation. We both remain hopeful there will be noticeable benefits, even though we recognize this is not a cure for the disease, and as such any continuing benefits will be limited due to the degenerative nature of the disease.

It is our objective to post results here as accurately as possible (we recognize that some of our measurement criteria will be somewhat subjective in nature) and on a periodic, somewhat regular basis (at least every 2-4 weeks). If anyone has specific questions for us, we have posted our e-mail address, and we will respond in as timely a manner as possible.