Hope for the future with stem cells

Rich and I spent last week in Panama City, Panama. We were able to visit the Panama Canal and learn a lot about the history of Panama City. I never really thought much about the Panama Canal but learning its history and seeing it in person was amazing.

Most of you know though, we did not visit Panama just to sightsee. Rich and I made the trip seeking stem cell treatment in hopes of improving my current condition of MS. Stem cells are something I have thought about over the past few years but did not really consider seriously until earlier this year. Let me start by giving you some background information on stem cells and what ultimately led to my decision to pursue the next step in my journey to healing.

STEM CELLS are self-renewing, unspecialized cells that that can develop into other types of cells throughout the body. Stem cell treatment has been around for decades in the form of bone marrow transplants. Controversy arose in the late 90s when scientists began researching the potential of embryonic stem cells in treating and possibly curing disease. The controversy gave stem cells a bad name and laws were passed limiting their medical use. Over the last 10-15 years scientists have discovered the benefits of using other types of stem cells which generally are termed adult stem cells. Adult stem cells are found throughout the body in many organs, the fat tissue, blood, and bone marrow. They can be found in children and adults. Fortunately as research continues, scientists are learning the greater potential of adult stem cells including the use of stem cells obtained from umbilical cord blood often donated after childbirth. Stem cells have shown to control inflammation, regulate the immune system, stimulate tissue regeneration, and reduce scarring.

Countries from all over the world, including the US, are conducting trials using a variety of stem cells for MS and other conditions with some success. The potential is huge for the future treatment of injury and disease. Stem cells have been used widely to treat basic orthopedic conditions and have been proven effective in spinal cord injuries.

Because of the excitement around stem cell therapy, hundreds of stem cell clinics have opened up across the country using adult stem cells. This has forced FDA to seek more regulation over their use. Some therapy treatments are offered in a variety of states but they are limited in how they can collect, duplicate, and use stem cells. Stem cells are currently classified by the FDA in the same category as pharmaceuticals. This means treatment approval has to go through a lengthy and expensive approval process.

I have checked trials over the past 2 years related to stem cells and MS but the trials enrolling patients were far away and excluded patients with a history of metastatic cancer. I never held out hope I would be a good candidate. It will probably be a decade or more before any type of stem cell therapy for MS is approved by the FDA.

A video has been circulating for a while of a coach from Ennis, Texas, who was forced to retire due to MS in 2010. He made three trips to Panama to receive stem cell treatments. After the third treatment his symptoms slowly started to improve and he currently has no symptoms. This year he was hired back as the head football coach in Ennis. The first time I saw the video I thought, wow there is hope. But it would be a big risk and a lot of money to pursue with no guarantees of success. Eventually his story started to resurface, and again I saw a video explaining his remarkable recovery. I started doing some research. One evening I talked to Rich about the video, which he had also seen, and said I wanted to consider treatment. He was on board immediately.

I did some more research and considered using a clinic out of Houston, which was started under the influence of Rick Perry. He received stem cell treatment for his back pain in 2011. But the research kept pointing to the Stem Cell Institute of Panama. The founder of this clinic is a pioneer in this field. He is well published and the clinic recently completed a small MS study showing positive results for MS patients. They have been developing, researching and modifying their treatments since 2006 and it seemed obvious this was the right clinic. I applied for treatment and was approved in late June.

Soon after I was approved for treatment, Rich and I headed north and met with the coach from Ennis, Sam Harrell and his wife Kathy. They had nothing but positive praise for the clinic and the treatment. Sam’s story is amazing. He was disabled with similar issues as me and now he has his life back. Knowing there is hope was enough for me to feel good about our decision. In the US there is no hope for improvement with the current MS treatments.

There are other stories of drastic improvement and some of mild to moderate improvement with stem cell treatment, at the clinic in Panama and in current trials underway. Of course not everyone sees results and not everyone responds the same which can be said of most treatment protocols for cancer or any other disease. Some people that do improve notice their symptoms returning after a while and return for additional treatments. Some people do not see much or any improvement after their first visit. It took Sam Harrell 3 trips to Panama to see drastic improvement. When you are faced with limited choices to better your quality of life you take some chances. Choosing stem cells was not difficult. The side effects are minimal to none. The only real risk is financial. Life is short not to take some chances.

THE STEM CELL INSTITUTE OF PANAMA officially opened in 2006. The founder Neil Riordan PA, PhD, began his work with stem cells in Costa Rica eventually moving to Panama due to restrictive regulations. The clinic currently provides therapy for a variety of conditions including autism, spinal cord injuries, MS, arthritis, auto immune diseases, heart failure, and others.

Over the years treatment protocols have been adapted based on research and results. Sam Harrell originally received 4 weeks of treatment using a combination of stem cells from fat tissue and umbilical cord blood. The current MS protocol is 4 days with only umbilical cord stem cells. Spinal cord injuries are currently treated over 4 weeks using the patient’s bone marrow cells and umbilical cord cells.

Umbilical cord cells are by far the most used type of stem cells at the clinic. Dr. Riordan and his team have developed a process of identifying the most effective cells. The cells go through a rigorous screening process and only a fraction of the donated umbilical cord cells are used for treatment. In fact the stem cells from Dr. Riordan’s lab are the only umbilical cord stem cells approved for use in the US. The cells are currently being used in 2 case trials for children with Muscular Dystrophy under a new law that was passed allowing the use of an investigational drug for compassionate use. The law means in some circumstances a patient has the right to try treatments that are not officially approved when there is no other option or as a last resort.

The clinic currently sees approximately 25-40 patients a week. Over the last few years there has been increased publicity through internet videos, celebrities, and success stories that has contributed to the increasing numbers of patients seeking treatment.

If you want to learn more about the Stem Cell Institute, Dr. Riordan, or his research, you can visit www.cellmedicine.com.

MY TREATMENT and experience was relatively uneventful. The clinic has a medical staff of physicians and nurses just like every other medical clinic you visit. Since most people are traveling from the US or other countries, they also have a staff that helps coordinate the trip from the time you are approved for treatment until the day of your departure. Transportation to and from the airport and hotel accommodations were included in the treatment package. We were greeted at the airport and taken to a vehicle where a driver was waiting to take us to the hotel. Many of the drivers we encountered with the clinic and with Uber were very friendly and shared a lot of great information about the city of Panama. Patients at the clinic stay at the Panama Hilton and the clinic is also located in the same building on the 63rd floor. I am guessing the clinic provides lodging and transportation because it helps prevent patients from not showing up or being late to appointments. Working with stem cells requires time management and a lot can be wasted from no shows.

We arrived on Monday and Tuesday morning I had blood drawn for lab work. Wednesday I had a physical therapy session off site. It actually felt really good to work out again. They used electrical stimulation on my leg muscles in addition to exercises. Later that day I had my first infusion of stem cells. They used an IV which lasted about 20 minutes and then the doctor gave me two injections, one on either side of my abdomen. We had a brief discussion with the doctor, asked some questions and were finished in about 45 min. On Thursday I felt terrible and was dizzy most of the day. I don’t know if I overdid it on the exercise, if it was a reaction to the stem cells, or just MS, but I rested much of the day. My only treatment was another 20 minute IV in the afternoon. My blood pressure was running lower than normal which could explain the dizziness, but it increased some by the time I left. The final treatment was on Friday, which followed the same routine as Wednesday, an IV and two injections. I went to physical therapy again the same day but just did the E-stim and some stretching.

We met with the doctor each day and were able to ask a lot of questions. The pervasive attitude seems to be that eventually stem cells have an impact on most people. Not everyone responds the same way and there are no guarantees. Many people see benefit after a few weeks but for some it could take months or multiple treatments. The minimum time before you can schedule another visit is 6 months.

I have approached this from a cautiously optimistic perspective. I am hoping to see some modest improvements in some areas but know there may not be much of a change. I will be tracking my symptoms weekly for several months looking for any subtle changes. I am also looking to see that my disease does not continue to progress as it has over the past 2 years. That alone would be a victory. This may not be my only trip to Panama and we will have to consider our options in a few months. Stem cell therapy is not a cure for MS and stem cell research for MS is relatively new. Even if I fully improve I will always have MS. The potential benefit from stem cells is great, but for now we are hopeful I may be one of the success stories. As always I share my story so that others can learn from my journey.