Stem cell treatment

[Deb]

Dr. Fett,
In all of your connections with various doctors worldwide, have you come across any doctors who are doing stem cell therapy for cardiomyopathy?

On another board I'm on, there is a guy in India who is undergoing stem cell treatment now. I've got my daughter's cord blood that I believe could be used for this type of treatment.

I just keep getting told that I'll need a transplant before stem cell research has advanced enough for treatment.

Thanks for your help.

[JAMESFETT]

Cellular cardioplasty--great promise, but so far as I know right now it is a research tool. Even at that one may be able to enter a research protocol at some large medical center doing this work. Sorry I am not familiar enough with where that is going on. This is why I say to those whose left ventricular EF is in the 20's and 30's, cellular cardioplasty is currently in research stage, and within 10 years there may be programs that offer this as a routine treatment. Maybe I'll learn more in the November AHA annual scientific meeting.

JD

[tabs]

A cardiac surgeon in Halifax Nova Scotia did some stem cell treatment back in 2000 (the year I was dx), but I can't remember if the patient had cardiomyopathy or heart damage from heart attacks.

I will try to find out more for you Deb.

Twilah

[Deb]

Thanks Tabs. India and Thailand are the only two places I know of so far that do this type of treatment. I plan on googling it today with some additional information I got from the other board.

[Deb]

I spoke with someone from the facility in Thailand last night and he emailed me some info today. It looks interesting, but the statistics aren't totally impressive. There treatment protocol is totally different than the doctor in India.

I need to speak with someone who can decipher this for me...any ideas?

[JAMESFETT]

Stem cell regeneration of functioning heart muscle research is very " hot" and there were many reports dealing with this at the AHA annual meeting. But most of this is with laboratory animals, and not practical for humans. The best PPCM info was the U Pitt report confirming the importance of treatment that included beta-blockade, making a great difference in both survival and recovery. The plasma hsCRP was also new to many, and merits greater use and contining studies.

JD

[Deb]

I'm doing reasonably well. I've been at the er twice in the past month or so due to high HRs that wouldn't slow down. But, hopefully it's just a "glitch" in the amount of medicine I take.

I emailed Dr. B about a stem cell place in Thailand that I had been speaking with someone about and he didn't seem all that impressed. They aren't "curing" DCM patients, but claim to improve their quality of life. Of course, all the patients still take their BB and ACE. However, statistically speaking, their survival rate was still only around 50%.

For $40,000, I figure I want something a little more concrete than that.

[pattynav]

Deb~
I have not posted in a very long time but I felt compelled to share with you my experience with stem cells. As you can see below my EF has not changed since dx 2 years ago. I too, have been told by Mayo of a future transplant..blah..blah...blah...I started researching stem cells and found studies in the US only were interested in ischemic cardiomyopathy(heart disease, heart attack related). Like you I spoke with the few places around the world actually doing the treatment for our dx. They were all in the infancy stage and had only treated less that a handful of non-ischemic cardiomyopathy patients..... I found the Institute of Cellular Medicine (cellmedicine.com) in Costa Rica was a good fit and traveled there 7 weeks ago and had the treatments. Subjectively I do feel better and I am excited for more to come. I still take all my meds and I was advised not to have an echo until 3 months post transplant, that would be the time period where regeneration would begin. That will be at the end of January. I too, researched and spoke to Vescell in Thailand and my Mayo transplant doc felt the same way about stem cells. It was a decision I made because I felt hopeless about my situation, I don't regret it, but I know the risk of the stem cells not working as well. Check out YouTube and type in "doctor recovered after stem cell transplant".
I hope this helps...Patricia

[JAMESFETT]

Regarding cord blood from the infant/mother during pregnancy, there is abundant evidence that fetal stem cells end up in mother's regenerating heart. It has yet to be shown that these cells help to improve heart function, but I think that is more likely than the opposite theory, which is that they trip off an autoimmune myocarditis that causes harm. In other organs, such as the liver, fetal-derived cells have massively taken over liver function and enabled survival and recovery in maternal liver necrosis and fulminant liver failure in the postpartum stage. So why couldn't it happen in the heart as well? And it has also been shown to be effective in animal studies. One reason for delays in applying animal studies to humans is the adage, "First, do no harm."

JD