Page 2 of 5 FirstFirst 1234 ... LastLast
Results 11 to 20 of 45

Thread: Has anyone tried Stem Cell treatment?

  1. #11
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    242
    I've read books, watched a lot of news and science programms about stem cell treatment. I'm not convinvinced that injecting stem cells into anybodys blood stream is the way to go. So I wouldn't pay top dollar for it. I feel that stem cell treatment if tried, (I stress tried as despite some successes there's a long way to go) ought to be targeted on to the site of which body part you want it to act, and for it to be part of a double blind trial. So for MND our faulty body part is our brains since it's here that the motor neurons are created and in laymans terms set off chain reactions. How many of us would have the courage to have stem cells introduced to the base of our brain? The danger of unintended consequences is I think huge and way beyond my current knowledge. We need gene therapy experts and brain surgeons on the case.

  2. #12
    Forum Member
    Join Date
    Jan 2018
    Posts
    57
    Elizabeth I pretty much found the same. The doctor who consulted me in Bangkok was over 80 and had more trouble walking than I did advised me to have all my filings removed before e would carry on with the treatment and the other 'doctor' simply hadn't read my notes. I found them very unprofessional tbh.

  3. #13
    Forum Member
    Join Date
    Jul 2018
    Posts
    10

    in reply to your query

    Dear Kushy,

    my partner suffers from PMA Progressive Muscular Atrophy which is also in the MND spectrum and very much like ALS.
    He has undergone the stem cell based therapy at the institute you mentioned in your opening post. This consisted of two parts where the active part i.e. infusion of the so-called secretome was done last week on three days 9, 11 and 13 July.

    Of course we are very much looking forward to positive results. This may take between two and six weeks to become apparent.

    We have a very good impression of the institute. We are convinced they really believe in what they are doing. But no guarantees can be given. We have to be patient.


    All the best for you and your father in law,

    Willem

  4. #14
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    6,961
    Hi Willem and welcome to the forum;

    Hope your partner shows some improvement.

    Best wishes, Terry

  5. #15
    Forum Member
    Join Date
    Jul 2018
    Posts
    10
    Thanks Terry,

    I will post updates on my partner's condition whether good or bad.


    Best wishes, Willem

  6. #16
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    6,961
    Hi Willem;

    It would be nice to know a few details if you are happy to release some or all of them.

    Where was it carried out and under what specialist.

    How long were you there for and was other treatments done as well?

    How were you treated and was there a language barrier?

    What was the approximate costs involved?

    Did they offer any further treatments?

    Love Terry

  7. #17
    Forum Member
    Join Date
    Jul 2018
    Posts
    10
    Dear Terry,

    here are some details for our case. This does not necessarily mean that they will be true for everyone but I think you get a much clearer picture.

    The treatment was done in two phases. The first phase consisted of two days (7 - 8 May) where blood tests were done, a consult took place with prof. Atta, and a mini-liposuction was performed under partial sedation to harvest the stem cells. Prof. Atta is I gather the specialist at Anova IRM for the stem cell based therapy.

    Note that before we were allowed to start all this, we had to do blood examinations at home and send the results to Anova IRM. I think this is to prevent a situation where you travel to their clinic and then learn after the blood tests, that you are not suited for treatment. In some cases (e.g. HIV infection) they will not treat you. Whether this is for patient safety or because of German law I don't know.

    Between the first phase and the second phase there is a minimum period of four weeks, in which the stem cells are grown and treated, and the serum is extracted.
    In our case we had a serious setback because a lung embolism manifested itself which had be treated first so although we had scheduled the second phase four weeks later, in the end we went to Frankfurt a.M. nine weeks after the first phase.

    The second phase consisted of three days (9 - 11 - 13 July) where the serum (they call it the secretome) was administered. I think it is always a Monday - Wednesday - Friday regime keeping one day between two administrations.

    Apart from the secretome, also a detoxification fluid was administered. This happenend on each of the three days, after the secretome was administered.

    Staff are all extremely friendly and helpful. There was no language barrier at all, as all communication was done in English. Of course German would also be possible.

    10 doses of secretome have been created. Of these my partner has now received 3 doses. This is to give an initial boost as they explained. If we want to we can have an additional 7 doses (one at a time). The time is usually two months between two appointments. The secretome is stored in a freezer at -80 degrees Celsius.

    The costs for our treatment so far have been 19,500 Euro excluding travel costs (by car from Rotterdam to Frankfurt) and hotel costs (we did not stay at the clinic and I don't think that is an option). If we want the additional 7 doses we have to pay extra for each dose.

    We spent a lot of our time and savings money on this. We also did a lot of research beforehand. Although we have no guarantee that it will work, we think this therapy to be the best bet given that doing nothing will almost certainly mean the end for my partner.

    As stated, I will keep you updated on what we hope will be improvements in my partner's health.
    Last edited by willem3069; 24th July 2018 at 15:38.

  8. #18
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,462
    Hi Willem,

    Thank you for being so open and honest about the treatment and what it entails - it's refreshing!

    I wish you both all the best.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  9. #19
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    6,961
    Thanks Willem ;

    It is good to know the details and I reckon that there is where I would go if I was going to have the treatment done.

    All the best for you and your wife.

    Love Terry

  10. #20
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    147
    Quote Originally Posted by willem3069 View Post
    The treatment was done in two phases. The first phase consisted of two days (7 - 8 May) where blood tests were done, a consult took place with prof. Atta, and a mini-liposuction was performed under partial sedation to harvest the stem cells. Prof. Atta is I gather the specialist at Anova IRM for the stem cell based therapy
    Thank you Willem for explaining this but I wonder if you have any understanding you can share of how this process is expected to help?

    Or perhaps what it is expected to do?
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •