Dr. Louis Cona and Debbie Petrina
I did it! And would do it again.
After much research and living with this beastly disease for 39 years, I found the opportunity I had been waiting for and took it. I am 64 years old, in perfect health, and probably would not see anything like this available in the United States for the rest of my life. And, it was not expensive relative to anything else out there for treatment that suited me.
I never took a disease modifying therapy/pain pill, practiced wellness (diet, sleep, exercise…) and am a paraplegic; though looking at my fit 105 lb. frame you would never think I had MS, or the other 10+ symptoms I have had to manage.
I went to DVC stem (https://www.dvcstem.com/ ) in the Cayman Islands, which stands for the Da Vinci Centre. Though existing for over ten years, the clinical trial for MSers began only about one and a half years ago. No, it is not considered a cure, but the purpose is to repair damage caused by MS and regain function. What makes them so special?
- It is a pioneer and practice by Medical Director Dr. Louis A. Cona, a licensed physician and surgeon, who did transplants and general medicine for forty years. He has a General Medical Office on Grand Cayman in addition to the Da Vinci Centre.
- They are one of the most highly regulated clinics in North America offering this type of expanded cellular treatment. fully licensed and inspected by the government of the Cayman Islands. As a British Overseas Territory, healthcare regulations are extremely strict, on par with the US, UK, and EU. The entire medical staff is fully registered and licensed, and the stem cell protocols are IRB reviewed and approved by a board in the United States.
- DVC Stem is partnered with Vitro Biopharma, an award-winning medical laboratory located in Golden, Colorado, which is fully FDA registered. Cells are only sourced from American Association of Tissue Bank (AATB) certified suppliers of full term, ethically US donated human umbilical cords. The selection of these donated tissues is extremely regulated and strict. All of these cells are expanded using safe and standard protocols and are then flown overnight in sub-zero containers directly to the clinic for immediate treatment. To ensure maximum treatment effectiveness, the cells are expanded to as much as 300 million cells before being administered. http://www.vitrobiopharma.com. There is no other country that has these standards.
- DVC Stem uses cord tissue-derived mesenchymal stem cells sourced from US-donated, full term human umbilical cords. While other common sources of stem cells are fat tissue or bone marrow taken from the patient directly, there are many benefits to using cord tissue. Cord tissue-derived cells are essentially “new”, in their most primal state, free from the effects of aging or disease. Additionally, they are minimally invasive to the patient, without the need for any extractions, free from immune rejection, and have zero risk of transferring viruses or other communicable diseases.
- Treatment consists of a two-day period including a 3-hr. IV transplant of 300M cord tissue-derived stem cells, as well as a variety of therapies designed to aid stem cell activation and potency (chiro, physiotherapy, acupuncture, lymphatic massage, etc). I was delighted—no chemo, immune-system wipeouts, hospital stays!!!
- To apply for the treatment, a phone consultation with Dr. Cona is arranged to discuss your specific case and candidacy for treatment in depth. He is very selective in approving potential patients.
- After the consultation and acceptance by Dr. Cona, I was given two packets of information to be completed by me and my doctor, as well as a two-page list of current tests, labs, doctor visits, vitals… that needed to be performed. The purpose is to rule out any diseases, infections, illnesses etc. to prevent diverting the cells from repairing something else and not MS damage. (It was maddening, but I thought it made so much sense.)
- I researched everything I could think of, and personally talked with others who had actually gone to DVC for cells. About 150 MSers went there over the past year and a half. Not one person has had bad side effects, and all showed different types of improvement in different ways.
Of special note is my personal assessment/professionalism of all staff, the sterility and comfort of the clinic. Dr. Cona was personally with me when he did the three-hour infusion in all his sterile garb, and we talked non-stop the entire time. He wants to know his patients, and at discharge, he said that I or my physicians should feel free to call him anytime. He has been courted by other countries (Panama, China, India) to partner with him for knowledge and profit, but has declined all of them. His only interest is his patients’ well-being, not profit.
After returning home, follow-ups or “markers” of MRI’s etc. are requested to determine progress at various intervals.
I put a list together of all of my MS symptoms, and have kept a journal since May 29, 2019 that was my IV date. It has only been two weeks, and by June 12th here are some specifics from my journal:
May 29, day of infusion
Very bad headache, dizziness, light-headedness, foggy throughout evening. Trouble sleeping. Symptoms all gone the next morning.
Overall, feel good. More endurance, ability, time doing aquatic water therapy (one hour). Clear head. Feel stronger despite rigorous pace of travel and unpacking, etc after trip.
Continued as above. Today, balance seems improving. Took Grizzly on his entire walk this morning without having to hold on to an armrest. Spasticity seems to show improvement. Less tremors and tightness, especially in the morning when I get up. Was able to do 9 push-ups on wall in pool. Could not do this before.
Did 10 pushups on wall in pool. No nap today—just a 45-minute lay-down– very busy all day. (yesterday was a high-anxiety day/ 112-degree day).
Spasticity definitely improved: longer stretches between baclofen pills (3 instead of 6 pills/day), easy to get catheter in, sometimes start to pee without catheter. Balance getting better–washed hair with both hands and am able to do many things without needing to hold on with one hand for support. Feeling stronger—did 12 pushups on side of pool. Seems easier to move legs around and up, though I still can’t do it on my own. Only lower back pain now. I can hold a pen more securely and write better. Bowels still messed up. (Note: this is happening on a day following 3 days of high anxiety/stress and excessive near the triple digits.)
Today is a “pay day”. I have been pushing too hard and the heat/anxiety was overwhelming. I’m going to listen to my body and just rest and sleep.
To learn more about the DVC stem cell treatments, I recommend visiting https://www.dvcstem.com/.
Additionally, here is a link to an article put together on how stem cells are used to treat the symptoms of MS: https://www.dvcstem.com/articles/stem-cells-for-ms/, and an article about David Lyons, founder of the MS Fitness Challenge: https://www.dvcstem.com/articles/david-lyons-ms-fitness-challenge/. Being a member of David’s site enables persons to receive the stem treatment for $17,500. David went to Dr. Cona in Oct. 2018 with a leg that was dragging with a dropped foot. He is now jogging!
Would I do it again? Absolutely! I had nothing to lose except my time and $22.5K for total fees and all travel expenses. It was safe with no side effects. At the date of this post, Pharmas offering treatments in the U.S. cost $50K-$70,000 annually for DMT’s (disease modifying therapies) for MS. They are only effective <50% of the time, have side effects, and require intensive follow-up that is exhausting. I was not desperate enough to consider the high risk of HSCT in U.S. clinical trials.
Stem Cell Update—January 20, 2022
Since my infusion, my neuropathy symptoms remain improved–less numbness, burning and stabbing sensations. Hand coordination, sensory and strength remain good e.g., can button buttons, grip a pen and write, feel objects in my purse, shuffle cards… (could not do any of these things for years prior to receiving the stem cells) Much less overall fatigue and more energy since the procedure. Cog functioning is very good except for forgetfulness, that is probably due to my age. No improvement in bowel/bladder functions, or ability to walk. Can stand, but only for long enough to pivot or do ten partial leg squats holding on with both hands. I have no doubt after all of this time that this stem cell procedure was successful for me.
Author of Managing MS
MS Counselor/Living with MS 39 years.