[kjcolpman]

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 I went once a week. The first week the MSC stems were delivered IV accompanied with oxygen and vitamin therapy. The following two weeks the cells were intrathecal (into spinal canal). Again these treatments were wc company with oxygen and IV therapies. After three months, I returned and did one ‘booster’ treatment of IT, stem cell injection with the vitamin and oxygen therapy. I felt absolutely amazing!

Most clients will do stem cell therapy once a year maybe twice. But that’s just people without health issues that are simply doing it for your own health and well-being and anti-aging etc. With ALS, I figured I wanted to keep a large backlog of those cells working and transforming into some thing that I hoped would help me 🙂

My reasoning for going was to mimic the Nurown clinical trial. I was set to go at least three times a year if I thought it was going to be helpful. When the results came out for phase 3 of the trial indicating that there was no statistical significance to this type of treatment, I put my own stem cell therapy on hold.

scientifically, I think they might be a long way from The stem cells differentiating into motor neurons Or having a direct impact on the disease itself  However In terms of overall health anti-aging and well-being, I think it’s amazing. As I say I felt fantastic, but it’s very expensive so I have put my funds towards other strategies.

If you have the means and the money, I would highly recommend it. Giostar also has a clinic in Chicago.

[kjcolpman]

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 one day of treatment is C$5900. You also have to factor in travel. It may be possible to get a letter from your neurologist stating that this treatment is not available for you in your city/country at which point you can perhaps write it off of your taxes. Hope this helps

[kjcolpman]

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 those say there is amazing support in the ALS society and incredible people to help along the way. But That’s not really my goal. My goal is to slow halt or reverse this nasty disease.

I am doing the AMX 0035 protocol-  the Tudca and the phebrurane. It is very expensive but I am applying for some funding through our fair Pharma care system in Canada. In conjunction with this I do take the riluzole. My daily regime includes 20 minutes on a BeMer mat for improved circulation,  an hour in my hyperbaric oxygen chamber, half an hour in an infrared sauna (135 degrees), yoga with some strength training and Walking my dog. 16 months ago I had stem cell therapy over a three week period.

I am sharing this because I think it’s helpful to see what other people are doing. Is it helping? Who knows! And there’s no way to tell if the AMEX 0035 is responsible for how good I feel or if it’s everything else I’m doing. I believe like the other person mentioned, it’s just a personal experiment of trying Different things and seeing how you feel.

[kjcolpman]

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

[kjcolpman]

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 to figure out if it’s helping or not, unless you actually see a reduction in symptoms. How do you actually know if it’s slowing the disease?? My hope is the combination of all I do is actually slowing things down waiting for that magic pill one day 🙂

My symptoms began two years ago and my official diagnosis was a year and a half ago. I started right away on the riluzole and Keppra for muscle cramping. Most of my issues present in my hands. I went right away for stem cell therapy and did this twice over the course of four months. I have not continued with that, as it is expensive, and there was some scientific evidence to indicate this may not be as effective as originally thought. Therefore put my resources into other things

My regime today is as follows:

I walk an hour each day, I have a personal trainer once a week and do weight training three days a week, and yoga on three other days a week. I spend one hour everyday in my hyperbaric oxygen chamber breathing 97% concentrated oxygen. I have the BeMer EMF Mat to promote circulation and relaxation. I lay on that every day for 16 minutes, and sleep on it once a week. Five nights a week I sit for 30 minutes in my infrared sauna at 140°. I take a variety of supplements including reservitol MetForman, CoQ10, vitamin D, TA 65, calcium and a multivitamin. I have an amazing family and friend community and remain positive and thankful every day, Honestly this is probably the best medicine of all of the things I’ve listed!

At my one year check up, I had only lost two points on the functional scale, so I was pretty excited. Is this a result of what I’m doing? Or is it a result of a slow progressing disease in my case? I have no idea! I just think that keeping my body as healthy as possible it will have the best chance to fight this horrible disease.

If others have any tips on their day today regime I would be happy to hear 🙂

[kjcolpman]

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 therapy. I have no idea if it is working as I don’t know what my progression would be. At the moment, I started 1 1/2 years ago with left forefinger weakenss which has progressed to quite weak and the middle finger and thumb is also starting.

I am going to continue b/c at the very least it is amazing for my overall health. My father has been getting regular stems for 6 years. He’s 84 and operates like he’s 65. Does this reflect how it will affect ALS? Who knows, but I’m willing to try!