Anyone here ever dealt with stem cell infusion?
 

Or know anyone [personally] that has. Care to share your story?

will the cells be from an unrelated donor, twin, or the patient...?

I know a doctor at our church that does that here in the Philippines for free for people who can't afford it. He got his training in Florida. Talk about a big heart and living out one's faith.

Looking at from the patient. Is this something you have looked into?

I've had it done with my knee, it's saved me from a knee replacement. It took a long time (over six months) for the benefits to be realized. If your knee isn't too far gone it's a lot nicer than having them grinding and chiseling away bone to put in a knee replacement.

Wow, I am going to have to look more into this.

Apparently they can try it with Crohn's patients in hopes of resetting our immune systems?

First I've heard of this and I am usually pretty up to date on this disease.

Thanks for mentioning this, baddog.

no, i had mine from an unrelated donor, which meant i was plagued with graph vs host disease for years...
with the patients own cells (autologous) there is a lesser problem with that..

also, if memory serves me correct, with an unrelated donor, you need total body radiation, which you dont need if you use your own blood cells ...

Definitely, use your own cells and I suggest you look towards Panama. We were just reading about Northwestern doing the chemo first, I am going to guess they were using donor stem cells.

epitome, we have done a ton of research (you can find the back story on Gotbaddog) and crohn's is always mentioned as one of the success stories. If I had it, I would be setting up my appointment in the morning.

epitome, I will go so far as to say that there is no way you would have any way of knowing this in the US unless you went out of your way to find out. Big drug companies don't want you to know this. We discovered this as a fluke.

I will check out your site. Been awhile since I've been, anyway.

Insurance coverage starts on April 1. Is this something insurance companies consider or are you on your own?

http://pinterest.com/geekgoodgirl/stem-cell-research/ Some of the stuff goodgirl has gathered.

To be honest, we never considered the insurance company as I am sure they are in bed with the pharmaceutical companies. We might ask, but I am not holding my breath.

My Internet is down and am using my phone right now, so if you talk about this on your blog, just let me know...

But...

How do using your own cells work? Wouldn't mine already be compromised?

I recently read that for all of these years they've considered crohn's to be an over active immune system but now they are trying to explore it from a deficiency angle. It'd be ironic if they haven't been able to find a cause or cure all of these years because they were looking at the problem from the wrong side.

I am going to ask them then. The only thing I've responded to is Remicaide, which is $3-5k a pop every 8 weeks, paid for by insurance. Going to do my research and try to propose it as a potential cost saving measure.

I fought long and hard to get Remicaide covered when it was newer and considered more experimental. Maybe I can win this, too.

In a nutshell, from what I understand, there are too many T cells, they are regulated by cells that are trapped in the fat of your body. They lipo a pound of fat from you, and take the stem cells from it, then inject them where they need to start working. Now, this is for RA, which is a lot like Crohn's, so I may be making presumptions about how they do it for your illness. It should be very easy to find out, but again, stay away from US clinical trials, look at places that don't have the FDA messing with them.

You think the pharmaceutical companies want to lose you to a one time $15-20k procedure? Not a chance.

Besides the money, you have to consider what the drugs do to you . . . right?

RA and Crohn's are very similar. From what I can tell, it's practically the same disease, just different parts of the body are affected.

Remicade and Humera (sp?) are great examples of using the same drugs to treat both RA and Crohn's.

I hear the Philippines have great health care at cheap prices. Maybe a trip is in order.

Or Panama City.

I thought it would be way more than 15-20k. Not bad.

Remicade isn't even good for me long term. I have to take breaks from it after 5 or 6 treatments because it stops working.

What sucks though is over the years I've tried everything and that was the only thing I responded to.

I need to find something else and maybe this is it.

Certainly closer.

Exactly. I am serious, if I was you I would be getting my shit together tomorrow. We will be going ASAP and I will be documenting the entire process. Time to get the word out.

BD,
I don't know the ins and outs of it but I rented a place a while ago from a guy who prior to getting stem cells (according to his son) could hardly walk and was a beat down old man. I only met him after the fact but he was moving around like a young man and looked great. He was going to China for his. Apparently changed his life. Last I heard they were trying to start a business in Thailand where they were bringing in Chinese doctors so they could do it here. Not sure if that has panned out yet or not.

I wish I had more details for you, but that is all I know. But the guy moved and looked great. So much so that I have a hard time believing he had difficulty walking before.

Actually, Thailand was one of the places we considered and China was one we nixed. I know if I told her they had Chinese doctors in Thailand she would freak. Like epitome said, Panama is a lot closer. I have seen enough to know it works and the FDA will never let us have it. So I will take her to it. Simple.

Smartest thing you can do.

Medical tourism is a BOOMING industry and people are pouring out of the USA to go to other countries to get better care for less money. Don't let the FDA hold you back.

If you end up coming over to this side of the world and need any help with anything, you know how to contact me. Not sure if they do where you need to go, but it's not uncommon to find American and European doctors working in the top Thai hospitals, which I may add are usually much nicer and better organized than American hospitals.

The only issue I have with Thai hospitals is Thai doctors. You really need to do your research when dealing with them because they are not usually as thorough as western doctors, so you need to stay on top of them. Also, like in the USA, and this is fairly new here, they seem to be squeeze more money out of their patients these days in the Hospitals with newer facilities. Running extra tests you don't need, and so on. Again, if you know what you need going in and don't let them do anything else, you are fine. But if you give them a green light to do whatever, you may end up paying a lot more than you wanted. Even then, it's still cheap.

When I had my accident last year, both me and my GF were rushed to the hospital (hit by a speeding car while on our bike), emergency room, taken care of right away, lots of xrays, treatment of serious road rash, cast for broken bones, drugs, crutches, and so on. For the BOTH of us total was around $400 USD, and that including the ride there. You really can't beat that. You'd pay that for the ride alone in the USA.

we have collected stem cells from both of our boys and put them into freezing.
Pre paid for 20 years. I hope we never have to use them.

I would love to read up on information though, new techniques they are using etc.

same with TRT, the orthopedic surgeon I spoke with about TRT was stunned when I told him about TRT, he looked at me said the older I get the more I find out the FDA is keeping from us Dr's.... good luck BD

The one US company i know takes them in there facility for like 2k then stores them for a free. they also make a rejuvenating cream from your cell which is supposed to be really good for you.

The only downfall is most of the procedures must be done outside the U.S.

That would be the positive from the research we have done.


DWB - I was the one that suggested Thailand to her when we first started looking. At first we were pretty enthusiastic about going there, but when doing research we were unable to find the same kind of referrals that we were able to find for this Panamanian place. It is run by American doctors that were being repressed in the US.

Phoenix - I have to wonder why you would bother doing that since they can be retrieved at any time. I do know that the place we are looking at does store whatever leftover stem cells they recover, in case you need them later, but that only eliminates one step. I hope you do not need them either.

as far as i know...the stem cells collected in the umbilical cord are better, in regards to what they can be made into...regardless it is done.:)