By Emily Wingate and Gina Rathbun
Serving up a premium brand cocktail for eight thousand dollars evokes a completely new meaning to bellying up to the bar. That is the cost for a good cocktail and not the kind consisting of alcohol and spirits, this is a Myers’ cocktail. It had better be a strong cocktail for that amount, especially when insurance does not cover the expense of getting it. The ingredients in this mixture contain powerful antioxidants among other “feel good” B and C vitamins that produce a healthy high with therapeutic cellular benefits. Yes, it is pricey, but this cocktail has a very different goal – to serve up nutritional therapy using an intravenous vitamin and mineral formula along with a mixture of amniotic stem cells (the kind that lack the ethical problems associated with the use of cells from embryos) for the treatment of a wide range of medical conditions. The idea is to prepare the cell with nutrients to receive the amniotic stem cells. Amniotic stem cells are readily available and derived from the discarded placenta at birth. The hope is it will improve her quality of life to help her diagnosis of ALS (Lou Gehrig’s disease) – a disease my mother has lived with since 2009.
Upon learning of my mother’s situation and desire to try an alternative therapy, a dear friend in our community, Steph Pettit, donated the first round on behalf of his company, Clean Earth. His generosity allowed my mom to get eight weeks of the Myer’s Cocktail, along with amniotic stem cells. Since May 12, 2016, my mom and I have driving an hour and a half to Clermont, Florida, for a new treatment using an intravenous injection of the Myers’ cocktail, glutathione, and amniotic stem cells. There is plenty of positive research using this concoction. Her respiratory therapist told us about a doctor that one of her patients was seeing and thought it might be worth investigating. Since the department of Neurology, at USF, has not received any approval for clinical trials that my mom would be eligible for given her respiratory numbers are too low, we decided we would go meet with Dr. James Ray in Clermont.
Turns out that Dr. Ray was offering the treatment for not only ALS patients, but for cancer patients and others who simply wanted to improve their quality of life. After our first visit with Dr. Ray, we decided on a few things. First, there was nothing out there for my mom to participate in regarding a clinical trial, which could potentially help her. Second, there was nothing we had to lose, and if this didn’t work, at least we could say we tried. Third, even though Dr. Ray wasn’t claiming a cure, we could see the determination in his eyes that this treatment was something he was hopeful about and was eager to see an improvement with my mom’s health and quality of life over all. He was sincere, thoughtful, and willing to explore an alternative therapy for my mom. The moment we had our first consultation, we could tell we were in safe hands, after all, he is an orthopedic surgeon and using this on his own patients.
Dr. Ray was honest about the process and didn’t give us any false hope about it. I think he could tell how frustrated I was and eager the two of us were to start something, anything for that matter that was proactive. He encouraged us to spend some time researching the benefits of the Myers’ Cocktail Mix and the use of amniotic stem cells. After we finished our visit, we decided to go for it. So for $8,000.00 she was getting Myers Cocktail Mix, stem cells, and a regimen of supplements she would incorporate into her daily routine.
So every Thursday, we drive to go see Dr. Ray and his team. However, the trip is never quite that simple. Every time we drive there and back, we run into a torrential down pour of rain. When we get there, the nurses usually spend about two hours finding a good vein on her arm, and when they stick her, her veins usually roll or blow. At other times, it looks like a murder scene after all of the poking. I will never forget our first visit. The two nurses spent a good hour trying to find a vein on my mom. Eventually, after slapping her around a bit and leaning her over her wheel chair to let the blood flow down her arm, they finally got one. Since we were being spontaneous about going forward with the program, the nurses weren’t prepared that day to have us in the right room to receive the bag of intravenous fluid. We all laughed as they had to rig the bag of fluid by hanging it from a nail on the wall to make sure the drip was steady. “Hey, you do what you have to do, “they said.
Fast forward eight weeks later, we decided to go for another round of treatment. I could sense the financial concern in my mother’s voice as she said to me, “We need to get creative on how we could help offset some of the expense because I am tapping into our ‘living expenses’.” Then, she turns to me and says, “Isn’t that an oxymoron.” Although it’s still early, Dr. Ray explained that it would take six months before we could notice any improvement according to research. At this point, we were three months into the program and comfortable waiting.
At my mom’s last ALS Clinic visit, she was considered stable by her neurologist with a slight improvement on her pulmonary measurements. Of course, this was very encouraging news because ALS patients are not normally supposed to improve or be stable for a year. In addition, tracking her numbers provides data going forward as to how her protocol with Dr. Ray is progressing.
As you may know, there is still no cure for ALS. The money that was raised during the Ice Bucket Challenge continues to be used for research and other studies that the ALS Association awards. When submitted to the FDA, clinical trials often take years to be approved and funding is limited. So finding an alternative route that provides a healthy regimen and potentially improves quality of life, is both appealing and worthy of exploring.
Raising funds is necessary to continue this program with Dr. Ray as it is an expensive endeavor. We are grateful to all of our friends and family that have been with my mom every step of the way and appreciate any contributions for her continued quest to improve her own quality of living.
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