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 Stem cell treatment 
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Joined: Thu Apr 25, 2013 8:55 pm
Posts: 2
Post Stem cell treatment
My husband was diagnosed with LBD in April. Because he is doing fine at the moment, we have opted to not go down the drug path at this stage. Does anyone have any experience with, or knowledge of, stem cell therapy as a treatment?

Mon Jul 22, 2013 5:40 pm

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: Stem cell treatment
Welcome to the forum. I'm sorry you have to be here and deal with all the ups and downs that go with LBD but you have found a great place to ask questions and find support! I'm sorry I do not have any information on stem cell therapy but someone reading might so keep watching.

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Tue Jul 23, 2013 1:06 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Stem cell treatment
I'd like to welcome you also and like Pat, have no info. about stem cell treatment for LBD. However, if he has symptoms that can be helped with pharmaceuticals, you may want to consider that. There are several people on this forum whose LOs were dxd early, their LO went on drug therapy and they have had much success. Many of our LOs were not dxd until late into the disease process and then the drugs seem to not always help so much. It's such a newly dxd disease with new drug therapies, it is hard to find much other than anecdotal info. about what works and what doesn't. Also, people with LBD react so differently to the various drugs... But, I'd certainly want to try drug therapy if there were something the drs. thought would help me or my LO with LBD. Just my opinion, for what it's worth. Sorry you are having to deal with this disease and I hope you come back here often for info. and support. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Tue Jul 23, 2013 8:55 am

Joined: Thu Apr 25, 2013 8:55 pm
Posts: 2
Post Re: Stem cell treatment
Thank you Gail and Lynne. This is a difficult path to navigate and the neurologist has been less than helpful. The advice and anecdotes of others who have experienced this, coupled with diligent reading and research appear to be our best options at this point. I have found LBD - a caregivers guide by Helen and James Whitworth very helpful and I have ordered Dementia Beyond Drugs

Sat Jul 27, 2013 7:16 am

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: Stem cell treatment
Stem cell treatment is still in the "pre-clinical" stage for almost all diseases. That means people are still trying to see if it works in the lab, or in animal models. There have been a very few studies using fetal dopamine neuroblasts (more developed but still sort of general early-stage cells) but it's not ready for translation to large-scale trials, let alone general medical practice.

So we are very far from having a procedure that would be approved for clinical trials in human beings. There is great potential for the future, but that future - even the first efforts in humans - is still quite a few years down the road. I will paste below an abstract from a recent review article, on parkinsons but the same issues generally apply. (I know the second author and have worked with him although not published together. He's a smart guy and I think does a good job.)


Mov Disord. 2013 Jan;28(1):110-5. doi: 10.1002/mds.25343.
Cell therapy for Parkinson's disease: what next?
Bjorklund A, Kordower JH.
Wallenberg Neuroscience Center, Lund University, Sweden.
The idea to use transplants of dopamine-producing cells to substitute for the lost midbrain dopamine neurons in Parkinson's disease (PD) goes back to the 1970s. In this review we give an overview of the history of cell transplantation in animal models of PD, and summarize the experience gained from the open-label and placebo-controlled clinical trials performed so far using intrastriatal transplants of human fetal dopamine neuroblasts. Further development of this therapeutic approach face numerous challenges, for example in the development of protocols that allow generation of fully functional and safe midbrain dopamine neurons from stem cells. Based on recent promising advancements, efforts are now being made to develop standardized and efficient protocols, and adapt these protocols to good laboratory practice (GLP)/good manufacturing practice (GMP) conditions, to move this technology closer to clinical translation.
Copyright © 2013 Movement Disorder Society.

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Wed Aug 07, 2013 4:40 pm

Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Re: Stem cell treatment
K thought about this for my wife until I found otu it is not approved in the USA, not approved by any insurance and the cost is $30,000 for one treatment. Then, there may be more then one required. :cry:

Tue Aug 13, 2013 8:26 am
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