Stem Cell enquiry

Hi all, I have read that CIDP can actually be cured by Stem Cell therapy can any one here shed any light on whether they have heard of the treatment and if they are considering to have the treatment. Would love to know as if there is indeed a cure why should I and other CIDP sufferers sit in agony and just only have access to treatment that only lessens the symptom but does not actually solve the problem.

Indeed Dr. Burt’s trials have given CIDP suffers great results in stopping the progression.

Go to and search for norrthwestern and CIDP for information on the exact criteria. There is a very active Facebook group for Dr. Burt that Iccan invite you to, too.

There are many people that feel they are “cured”, which you can read about there. There is a list of blogs in the file section.

There is also a 0% mortality rate for this CIDP trial, too. I could tell you so many good things, but you can read it for yourself. Send me a message privately if you want an invite.

Yes Cia, I have been through Stem Cell Transplant so be careful that you are talking about a Transplant and not just stem cell therapy. There is a difference. I am in Dr Burt’s clinical trial and I’m at ~3 yr mark. I’ve not needed any treatments since the transplant but still deal with pain from damage done before the procedure. I would recommend it to those who are not managing with traditional treatments. I went through many therapies before I decided to continue with this path. My only regret is that I didn’t do it sooner. I think I would have less residual symptoms now.

My looking into Dr. Burt's program is he only takes patients below a certain age, and I didn't qualify. Not fair.

I had a chance to discuss the Stem Cell Transplant with a previous associate of Dr. Burt's who had hands on for most of the patients but no longer is involved. He had good things to say about the program but cautioned me on it also. He said that it is a very grueling and drastic step to take and only recommended it to people who have no other options. He said that there is not enough follow up on long-term side effects due to such high doses of chemo and that cancer down the way is certainly a possibility for side effects. I am one of the lucky ones to respond to IVIG very well and don't have any symptoms as long as I get my IVIG on time. I too would love to stop being pricked with a needle every 4 weeks and give up a day for my infusions but I guess for now I will sit tight and wait for the SCT to hopefully be approved in the future for use in all CIDP patients and be covered by insurance. Hopefully down the way they will find a way to tweak the SCT and work out any problems. But I am very interested and do keep up on this option if I would start to fail with IVIG.

It is very grueling but so was IVIG for me. I just wish it would be discussed with treatment options even if it is still in trial phase. I might have had the option to do it sooner and have less residual damage. Not having side effects from IVIG for the last 3 years was worth it for me. I felt like IVIG was slowly killing me even though it kept my CIDP fairly stable. I disagree with your neuro though. The chemo used for the transplant is the same chemo regimen (maybe even less harsh)than the regimen for a bone marrow transplant used in cancer patients. Think Robin Roberts( same process without a donor). It’s been used like that for decades so long term effects can be seen in those patients. Good question for your neuro! Mine was covered by insurance. A lot of companies are now covering because of data coming out from Phase 2 and 3 studies with MS under Dr. Burt. He will be releasing a document about Phase 2 outcome for CIDP very soon. I was told non relapse rate is 75-80% for us. Those who relapse still do not require as many IVIG treatments as before. Ex maybe once or twice a year instead of monthly.

I wish it was available for everyone and it was not just in one place, Chicago. Right now I would lose my job if I took off 3 months to have this done. I did think about it in the beginning of my diagnosis. But truly, there is no way for me to keep my job and have the procedure done. If it was local, say U of M that did the SCT then I would look into it. I keep my fingers crossed and hope for good things to come from the studies for CIDP sufferers!