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Thread: Stem Cell Institute in Panama

  1. #71
    @Barrington - We already have some great exercise equipment - which I agree is a great investment. But it only gets him so far, and we wanted to do more. And there are people who really truly have gotten good results - I've met people here, spinal cord patients, who are repeat patients, and can show me things they can do that they weren't able to do 6-12 months ago, when they came for their first treatment. I don't think they're lying to me. Not everyone gets great results, and not everyone ends up thinking the money was worth it. But for those who are happy with their results, and coming back for more - it's not just wishful thinking on their part. Time will tell which group we end up in - but I am 100% certain that there is a group of people who experience meaningful positive benefits from this treatment.

    Quote Originally Posted by Barrington314mx View Post
    very good points, and i agree with the first part. but i also agree with decaf that getting some equipment would be a better investment. these people that have told you they are happy with their results, is that because they are trying to find a positive in wasting $40k? sorry if thats being harsh. i hope he does get something from this treatment and im thankful that your sharing with us. just my thoughts.

  2. #72

    pain etc following stem cells

    Quote Originally Posted by GRAMMY View Post
    @vgraf If you don't mind my question...other than the pain caused by the procedure, did you or the others have any neurological loss from doing it? Do you have additional ongoing unwarranted pain?
    Immediately- no real neurolologic loss.
    It was over 2 years ago. I have a progressive disease. So, hell, who can tell? Yes, I have additional neurologic loss.
    Immediately after my month in Panama City, I worked with my PT for sensory recovery with nerve stimulation. I think that would have worked regardless of stem cells. Now ,though, I keep my sensory stim to a minimum because my pain has increased. More sensory capacity, existing damaged nerve pathways= more pain. I have more pain now.
    The program in Panama relied alot on physical rehab training for regaining strength and ability. It's my experience that is the most important component. I think my money would have been better invested in lots of PT and equipment based on Dana and Christopher Reeves foundation protocol.
    I did leave the program quite sick and very debilitated. I had had giardia the entire time and my doctor was too young to offer me anything but aloe vera. The last day, finally, the supervising doctor stepped in and gave me a prescription. I had gone to him before for help but it wasn't until I lost 30lbs in a month that he paid attention. A lot of giardia was going around Panama City that season.

  3. #73
    Quote Originally Posted by intheknowstemcells View Post
    Hello Wise. Thank you for responding and clearing that up. I can only read what they have on the site as of today. I did do some searching about cord blood HLA matching and would like to know your opinion on this: http://www.translational-medicine.com/content/5/1/8

    Thank you.
    Sorry for the delay in answering your question.

    Thirty years of clinical experience using umbilical cord blood cells to replace bone marrow hematopoietic stem cells suggests that HLA-matching is indeed important for engraftment of cells. If you inject cells that are not HLA-matched at all, the chances are the hematopoietic stem cells will be rejected.

    There are differences between cells, however. For example, bone marrow cells (from other donors must be perfect matches, i.e. 6:6 HLA, and preferably from close relatives or else the cells are rejected. The same is true for peripheral blood hematopoietic stem cells.

    Umbilical cord blood cells, however, will often engraft even if they are only 4:6 HLA matched and don't have to come from a close relative. We don't understand the reasons why this is the case. Some people have speculated that umbilical cord blood cells are immature and don't present antigens that stimulate immune rejection. However, studies of umbilical cord blood cells have not supported this speculation. They express HLA-A, B, C, Dr, and other HLA-antigens that must be matched in order to prevent immune rejection.

    One possibility is that some umbilical cord blood cells have anti-immune properties. Mesenchymal stem cells are also anti-immune because the can turn off inflammatory cells (such as Natural Killer cells and macrophages on contact). This is one of the reasons why unmatched mesenchymal cells are used as an anti-immune therapy when people develop a condition called graft-versus-host disease. The cells turn off the immune system and survive longer as result.

    We have hypothesized in our laboratory that some umbilical cord blood cells and particularly stem cells express anti-immune molecules such as HLA-G. This may explain why umbilical cord blood cells will engraft even if they are mismatched for 2:6 HLA. We are testing this hypothesis right now. Regardless of mechanism, I believe that umbilical cord blood mononuclear cells that is not HLA-matched will eventually be rejected when they transplanted into the spinal cord. That is why we are using HLA-matched cells for our chronic spinal cord injury trial.

    Wise.

  4. #74
    Quote Originally Posted by rahilka View Post
    @Vgraf - I'm surprised that you didn't meet anyone who had positive results. I think spinal cord injuries are one of the more difficult conditions they treat, with more variability in results. But I've met multiple people here with other issues (MS, CP, autism, rheumatoid arthritis) who have been very pleased with their results. How long ago were you here?
    Rahilka,
    I too want to express my best wishes for you. Please don't mistake my skepticism. I do believe that eventually stem cells will hold real promise as a do-able therapy. I continue to follow stem cell research etc. I've noticed that bone marrow obtained mesenchymal s.c's have come to be preferred over fat derived. And I noticed with interest that is what is being done in Panama now.( Another change, my hotel was included in the charge.) When I had the procedure done,September 2009, bone marrow was only being done in Israel. I corresponded with the CEO of the franchising research organization, then Cell Medicine, before my procedure and I read persuasive and interesting research. The franchising organization is not responsible for the clinic or the doctors, just the medical protocol (for which they have patent rights) and they collect information to further their research. They have more clinics around the world.
    I have been known to justify my huge expense as furthering reseach and helping other patients. I'll say that and picture you and your brother now.
    Panama was just getting off the ground when I was there. Then the Costa Rican government closed the CR clinic and the two joined forces in Panama. (Panma is still unregulated and actively seeking medical tourism.) So there weren't as many patients as I expected. That said, I did have amazingly creative dreams after my injections and debilitating fatigue. I could tell something happened but I don't believe my body could do much with the cells in the form that I got them. And the PT alone has had as much effect for me at other times.
    But it was 2 years ago and I think they didn't quite have their sh*t together. (no, don't tell someone to stop lyrica cold turkey for a month.) (yes, a spinal fusion will interfere with injections) (if spasticity meds are stopped, excessive spasticity will interfere with scheduled gym visits)( a month of truly severe headache, nausea, and diarrhea is not normal- it is not traveler's diarrhea)
    Excuse me I digress- just reliving a little.
    I can't recommend it to anyone. And I haven't seen any evidence otherwise.

  5. #75
    Quote Originally Posted by rahilka View Post
    @Barrington - We already have some great exercise equipment - which I agree is a great investment. But it only gets him so far, and we wanted to do more. And there are people who really truly have gotten good results - I've met people here, spinal cord patients, who are repeat patients, and can show me things they can do that they weren't able to do 6-12 months ago, when they came for their first treatment. I don't think they're lying to me. Not everyone gets great results, and not everyone ends up thinking the money was worth it. But for those who are happy with their results, and coming back for more - it's not just wishful thinking on their part. Time will tell which group we end up in - but I am 100% certain that there is a group of people who experience meaningful positive benefits from this treatment.
    i would argue that they would have had those returns no matter what. some people recover. not every sci keeps in a chair for life. again i thank you for taking the time to share. ill continue to read despite my position on this.

  6. #76
    If they're 0-24 months from injury, then, sure - lots of changes happen during that time period, and it's hard to say where the credit goes. But for people who are 5-10 years from injury, I don't think so. I've seen and heard of much more dramatic changes than could be expected to just naturally happen at that point.

    One guy I've met here is ten years post injury - he's here for his second treatment. He got a lot back in the first year, and was actually walking before he came for his first stem cell treatment. In the six months since his first treatment, his leg strength has increased dramatically - he's walking much better, and falling much less. In addition, he has way more energy than he used to have, and is now thinking of starting to work again for the first time in years. I don't think he just spontaneously started to recover function again after ten years. I think his results are probably better than average for one treatment. But people like him convince me that for some people, this does work - and it's not just the natural recovery process happening.

    With my brother, the things I'm really watching for are increased hand control, and increased bowel/bladder control. Those are areas we haven't seen a change in for years, and where minimal improvement can be expected from his physical therapy sessions - so any meaningful changes in those areas would be most likely to convince me it's really the stem cells working.

    Quote Originally Posted by Barrington314mx View Post
    i would argue that they would have had those returns no matter what. some people recover. not every sci keeps in a chair for life. again i thank you for taking the time to share. ill continue to read despite my position on this.

  7. #77
    no way in hell i would do that if i was already able to walk. that dude is crazy IMO. sorry to say. wow, what a risk.
    id say if someone went that was a complete injury 2 years post. then got treatment. then recovered. id believe it.

  8. #78
    I can understand that - questioning why you'd do it if you could already walk. But I guess everyone wants to improve, regardless of what their situation is. Even though he walks, he still had plenty of room for quality of life improvement.

    Over the next six months, I'll be interested to hear your reactions to my brother's results (assuming he experiences more results than the little things we've seen already, of course). We'll see if either of us ends up convincing the other He's incomplete, of course, so that'll still give you room for skepticism

    Quote Originally Posted by Barrington314mx View Post
    no way in hell i would do that if i was already able to walk. that dude is crazy IMO. sorry to say. wow, what a risk.
    id say if someone went that was a complete injury 2 years post. then got treatment. then recovered. id believe it.

  9. #79
    Short blog entry about some of the early results we're seeing since we've been home, in case anyone is interested.

    http://danielleonard.weebly.com/1/po...two-weeks.html

    I saw him stop a spasm himself today - actually send a message from his brain to his leg to stop spasming, and it worked. It was pretty amazing.

  10. #80
    Senior Member muskie's Avatar
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    Hi Rachel,

    How are things gong since you've been home I hope well and I hope your brother is keeping up his workout regiment.

    Kevin

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