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Kim

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@kjcolpman

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    Kim replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 4 months, 2 weeks ago

    I also I’m not doing a trial as I want to continue with all the other aspects of my care that I too have figured out for myself. I agree with you… You are diagnosed, patted on the head and told to get your affairs in order. Every six months they check my functional scale and clap their hands that I’ve only declined two points in one year. I will…[Read more]

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    Kim replied to the topic Sodium phenylbutyrate powder in the forum Living With ALS 5 months, 3 weeks ago

    I am taking it in Canada and pay $3000/ month.

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    Kim replied to the topic Stem Cell therapy for ALS in the forum Using our Forums 7 months, 4 weeks ago

    I have ALS and have experienced stem cell therapy. I went to Giostrar in Mexico which I found to be incredibly professional. They are staffed with doctors anaesthesiologist nurses etc. They are attached to their own lab where they cultivate the cells just prior to injecting them into their patients. I started off with a three week treatment where…[Read more]

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    Kim replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 8 months, 2 weeks ago

    Hi Judy I also started taking the Pheburane and TUDCA combination (Amx0035), About 2 1/2 months ago. I take 500 mg of TUDCA and 3 g of the PB twice a day. I have not noticed that the twitching in my legs has stopped.  In fact sometimes it’s ‘worse’ although that’s on days of my workouts and a fair bit of physical activity.

    I guess it’s also hard…[Read more]

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    Kim replied to the topic Living Longer with ALS in the forum Living With ALS 1 year, 5 months ago

    Amanda

    I go to Giostar in Mexico but they also have a clinic in Chicago. They are not by any means the only show in town but one that I like and trust. You can check around for better prices. It is not covered by insurance and it is not inexpensive. My first treatment was one day a week for three weeks and that was C$30,000. The booster which is…[Read more]

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    Kim posted a new activity comment 1 year, 5 months ago

    I go to Giostar in playa de Carmen. Their main office is in Chicago. I am quite confident in their stem cell harvesting and delivery very professional. Actually as I write I am hooked up receiving them 🙂

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  • Profile picture of Kim

    Kim replied to the topic Living Longer with ALS in the forum Living With ALS 1 year, 5 months ago

    I was diagnosed in June 2020 and started stem cell therapy in July 2020. I started with a 3 week treatment (1/week for stem cell injections over the three weeks), totally 120M cells. I am now receiving the ‘booster’ treatment of 40M cells. My plan is to get them 3/year. 20% are delivered IV and 80% IT, and is accompanied with vitamin and O2…[Read more]

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      Amanda replied 1 year, 5 months ago

      Kim, where are you getting this treatment and does insurance cover any of it? I’d be interested in learning more about what you are doing.

      Amanda

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    Kim became a registered member 1 year, 9 months ago

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      Amanda replied 1 year, 9 months ago

      Hello Kim,and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost my f…[Read more]

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 9 months ago

      Hello Kim,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or…[Read more]

    • Profile picture of Anthony Serda
      Anthony Serda replied 1 year, 5 months ago

      Kim,

      Where are you getting your stem cell therapy? I’m looking for stem cells trials, but can’t find any and my doctors have warned me against commercial stem cells.

      • Profile picture of Kim
        Kim replied 1 year, 5 months ago

        I go to Giostar in playa de Carmen. Their main office is in Chicago. I am quite confident in their stem cell harvesting and delivery very professional. Actually as I write I am hooked up receiving them 🙂

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