Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group My visit with Dr.Burt for stem cell transplant

Not even close to what Dr. Burt does.

This study looks like they probably give you an I.V. of the stemcells from cord blood.
Doubtful it would work. (it being done in China gives you a clue).
Dr. Burts transplants are much more then that. You are given chemo to get your immune system to zero and then are given the stem cells. It's at least a two month stay at the hospital there.

Dr. burt has trained a dr. in israel and sweden to do this and thats about it.

When you google stem cells you get all kinds of garbage. Some legit like the ones you get for cancer which are the full bone marrow transplants and are more serious because they wipe out your entire bone marrow and if your stem cells dont regenerate you die. Dr. burts are not like that. You are left with bone marrow stem cells to regenerate no matter what.
That being said it's no walk in the park. If you read some blogs on people that have had it done you realize it's a hard process and treatment. Ziggy's blog is a very good one.
but I want my health back fully and want off this treadmill of immuno supressing meds.

Wow, very exciting! Good on you for pursuing this - I hope that it can bring you relief!

Perhaps this was not the correct group to post this in. The clinical trials web site is run by the US National Institutes of Health, so I am thinking this would have to have some merit to it. Like I say, will be interesting to see the results of this clinical trial.

It will be interesting. Thanks for sharing.

Possi

TGuy1 - pop the info into the spondylitis research forum. Just the header and a brief sentence - then can find and follow up easily. In the main forum, in danger of getting lost in the melee... (Just a suggestion). The fact of the trial being under the banner of the NIH says a lot. People will tend to take note of that. Therefore an important note to point up.

Done. I think I got it into the right spot. I also included a direct link to the clinical trial

This is very interesting and I will be keeping tabs on it. I hope all goes well for you.

Do they think it will only work with those who are positive for HLA B27?

What does the procedure entail? From my reading on one site, I am inferring that it will be reprogramming of the immune system. Will this require the same procedures as for cancer in which they give you doses of chemo so high they kill off your own immune system first then give you the stem cells? If so this is a seriously high risk treatment.

finnari, this is something you have posted about before. It is obvious that you are passionate in your support of this experimental treatment. In order for medicine to make great advances, someone has to be willing to take the risk and be the first to undergo a treatment, take a medication, or have a medical procedure. I applaud those courageous souls. At the same time, it is important to emphasize that this is not a risk free guaranteed cure. The woman profiled in Ziggy's blog died on February 3, 2013 - less then two years after her 2nd stem cell transplant on May 10, 2011. She had her 1st stem cell transplant in September, 2009. Although each of those transplants were declared "successful" because they put her lymphoma into remission, that success was, unfortunately, temporary. Jennifer (a/k/a Ziggy) Linnabary's story is inspirational. It is also a reminder that this form of treatment is experimental.