This Is MS Multiple Sclerosis Community: Knowledge & Support

Anyone have any experience with this center?

I realize they are not offering chemo and stem cell therapy, but still looking for info. Thanks

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

Good to ask. No chemotherapy = no cure because the treatment does not eliminate from the body autoreactive immune cells which is necessary to cure MS. Also, because they do not engage in stem cell colony expansion work, immunomodulation cannot even be counted upon. Just like Cell Medicine / ICM / Stem Cell Institute (all the same company) in Panama, this is a scam with no demonstrated clinical benefit. Sad to see this activity in the US stealing desperate people's money.

Perhaps a good way to look at this facility is like a day spa. If it helps people to feel better about themselves, or provides an appreciated placebo effect, then go for it (if you have the $$$). But as far as MS is concerned, mccandless is correct. Just re-injecting one's own unmanipulated stem cells back into the body hasn't proven any reproducible or lasting beneficial effect. Its disappointing to think that there are people actually expecting some curative result which is profoundly unlikely to materialize.

On the other hand. . . replicating mesenchymal stem cells (MSC culture expansion) to high population levels and then re-infusing back into the body "might" have some benefit (yet to be definitively proven in a clinical setting, but the in-vitro science & data looks very good). Unfortunately, just like in Panama, the facility in Pheonix doesn't do this. (Their website even specifically states "using less than minimally manipulated technology" which I would interpret as meaning "useless.")

A technical paper I found that provide some clinical evidence on the subject of infusing colony-expanded MSC's as a medical therapy (which is not done in either Panama or Phoenix):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036569/

If someone is interested in "real" (possibly useful) MSC therapy that includes colony expansion manipulation, then I am aware of two facilities where it is performed. . . . 1) Clevland Clinic under FDA-approved phase I clinical trial, and 2) CTCI Israel. I wrote about the subject and facilities on this page under the listing of CTCI (I have no affiliation or relationship with these organizations):

http://themscure.blogspot.com/2011/06/g ... -have.html

An article I came across today that provides a good explanation summary as to why this (Phoenix) clinic can offer useless stem cell treatment in the United States and which is also why they do not / cannot perform colony expansion that would be required if any curative benefit is hoped to be seen from such a treatment. Specifically. . . .

FDA regulations have loopholes, Goldstein says. FDA guidelines limit its authority to regulate treatments involving cells that are withdrawn from a patient and then infused the same day with only "minimal manipulation." Last August, in a test of its authority, the FDA requested an injunction from the U.S. District Court in Washington, D.C., to block a Broomfield, Colo., orthopedic clinic, Regenerative Sciences, from formulating treatments of cultured stem cells.

The article from USAToday. . . .

Doctors offer unapproved stem cell therapies

http://yourlife.usatoday.com/health/sto ... 48933666/1

Another passage I found interesting, and most of all, correct. . . .

Daley says bone marrow [hematopoietic stem cell] transplantation [HSCT] remains the only proven form of stem cell therapy. "Virtually everything else is highly experimental," he says, including the most controversial stem cells of all, those derived from human embryos.

I took my wife to this clinic in Nov. of 2010. She has Alzheimers not MS. I am responding because I want you to know
our experience. It generally was good, the procedure went well and she had no negative side effects other then some discomfort
from the procedure to withdraw the fat.There were some positive things that happened from the stemcell procedure.
Her swallowing problems, and shuddering were made better or eliminated for a period of about one year.
Please call 970 223-9051 or send me you phone and I will call with more detail.

Now, I am looking for another place to go with different techniques/procedures.
ernie

Thanks so much Ernie. I hope your wife is doing well. I have decided not to go with this clinic as I think I may have an opportunity to participate in a stem cell trial at a dedicated MS clinic in NYC. I appreciate your response.

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

Thats really fantastic that you and your wife have seen individual benefit in the course of seeking this treatment for her AD, Ernie. Very happy to hear it, especially considering the insideous nature of AD. It's just too bad that such stem cell therapy (as offered in Phoenix) has not shown any 'repeatable' benefit for any disease or disorder in a controlled manner, which is required to scientifically prove the benefit came from the treatment. Without demonstrating in a controlled manner there is no way to know that the benefit is due to the actual treatment.

But I'm still happy to know that for whatever reason you are happy with the activity you have affirmatively decided to undertake. Sincere best wishes to you and your wife!

i have been following this type of stem cell treatment also due to my meniscus issues and arthritis in my knees. this is big pharma at its best trying to knock this one down. i know one person, a skier like myself, who had this treatment for his knees and he has had amazing results. there are multilple pro athletes that have had the same results.

http://espn.go.com/video/clip?id=7481146

This is good. So let's see it get into a trial or study that will show "repeatable" beneficial results in a controlled manner (the scientific gold standard of proof). Then we can all beleive it. It just makes me suspect that such clinics are taking people's money before doing so. If it works, it should be provable. If its not repeatable it doesn't count as curative therapy. Placebo effect doesn't count because it's not lasting.

Regardless, I'm still very glad to see people's improving health. A very good thing no matter how it occurs.

i don't know anything about this place in Arizona, but I'm not sure this type of treatment needs a trial. take a look at an mri...that's all i need.

http://www.prolotherapy.com/articles/Stem_Cell_2011.pdf

Hi Shaight,

Ecellent point. It is up to each individual to decide if any particular/specific treatment regimen is the correct treatment, or not for themselves. Other people cannot legitimately decide for us.

Although I'm curious about the paper you cited regarding "Prolotherapy" using stem cells. Prolotherapy is a treatment used in an attempt to provide healing improvement of soft connective-type tissues (such as ligaments and tendons). But this reference (and the prolotherapy field in general) makes no mention or connection with autoimmune disorders, such as MS. So I don't understand the relevance.

There is one thing I have especially noticed from reading the paper. . . . specifically stated regarding stem cells. . . .

"Multiple investigations have clearly demonstrated the in Vitro ability of AD-SC’s to differentiate into, and repair, musculoskeletal connective tissues including ligament,8 tendon,9-12 cartilage,13-15 disc,16 muscle,17-19 nerve tissue,20-22 bone,23-25 hematopoietic-supporting stroma,26-28 and to actively participate in tissue homeostasis, regeneration, and wound healing.29-31"

This statement is consistent with the current research statements regarding MSC-only infusion therapy for MS. "In-Vitro" (in the test tube) results do not equal "In-Vivo" (in the human body) results. The only way to truly (scientifically) conclusively prove such a thing is in a clinical study population. Statistics equals nature and nature equals statistics. So a sufficiently large statistically-relevant population is the only way to definitely establish a successful result. A population of one cannot prove anything, except the unchallenged faith of a single person.

Also, in MS, MRI scan images only weakly correlate with clinical disability. (Some people have lots of MRI lesions and no symptoms. And some people have severe symptoms and no MRI lesions.) So MRI images as a stand-alone tool are not very useful and cannot be used singularly for determining the diagnosis, course and severity of MS. That's why the definite diagnosis of MS requires evidence of clinical manifestations in addition to a postive MRI indication. They must be together before a diagnosis or determination is confirmed.

So when a population trial shows a beneficial result, that's when I'll beleive it. Not before. But separate from this. . . any treatment that you might singularly seek. . . my best wishes for the desired result. More power to your good health!

- George

yes, well i switched gears after reading the first paragraph of the USA today article referencing Bartolo Colon. The .pdf has nothing to do with MS, but i feel the more research with stem cells the better for all of us. there are many people that have gone thru this therapy and have had great results on their soft tissue and it is proven in their mri results. that is all i was saying. well, and the fact that our lobbyists are in the way once again. yes, i am somewhat bitter with the red tape and the $$$ influence in our government...here in the US.

Yes, Shaight, you and I agree 100%. More research and knowledge is better than less. I fully stand behind the push for more work understanding new theraputic approaches of all types. In the end it can only help our understanding of how to kick MS's butt!

georgegoss-- How repeatable is something with an on going disease going to be? My wife is back to having similar problems after approx. one
year. She is fighting alzheimers an active and on going disease.
Where are the Procedures that have been tested, are repeatable and available in the U.S.? Or available anywhere? Where are procedures
done that are doing some thing to enhance stem cells?
Doing anything in the U.S. to stem cells, chemicals etc. is illegal. However, I would probably go to a place outside the country where they
enhanced stem cells. There used to be one some place in Texas by McAllen, Tx. I believe. They may have moved to Miami.
Also, is there a website dedicated to alzheimers? I am newly back to looking again for things.
thanks, and God Bless all of your situations and searches for healing and good health. ernie

Ernie,

You have really set me thinking about this. Since I know so little about the application of stem cells in the treatment of AD, I'm going to dig around for more information on this specific subject (including data from overseas). If I were in the same time-sensitive situation, I also would not want to just sit around and do nothing. I would want to take some action, even if the therapy is yet unproven (but I would at least want to have confidence that at the least it's not snake oil).

If I come across something that I think you may find useful or helpful, I will let you know.

For now, my best wishes for you and you wife!

- George