On Wednesday, Sept. 6, Barb Rivard returned home from Puebla City, Mexico, after receiving stem cell treatment for her multiple sclerosis (MS).
At age 25, Rivard began suffering from the symptoms of relapsing-remitting multiple sclerosis (RRMS). MS is a chronic disease that attacks the central nervous system (brain, spinal cord and optic nerves). Symptoms include loss of vision, pain, fatigue, muscle spasms, impaired coordination, and numbness in the limbs. In severe cases, the patient can become paralyzed or blind.
Rivard was diagnosed in 1990. Incapacitating episodes could only be controlled with large doses of steroids. Muscle spasms in her legs prevented her from sleeping necessitating the installation of a baclofen pump to control the spasticity.
Over the next 15 years, she suffered through a succession of neurologists trying various regimens of expensive, often painful, MS drug treatments until she eventually met Dr. Rita Richardson at Westfields Hospital & Clinic. Dr. Richardson has been her neurologist for the past five years. Her disease caused her to lose several jobs, the last being as scheduler in the physical therapy department at Westfields.
Rejected by the only certified stem cell treatment program in the United States at Northwestern Hospital in Chicago, Rivard discovered the Clinica Ruiz option through an online community of MS patients who were seeking alternative programs to the Chicago option.
Her 24-day treatment program in Mexico cost her $54,000 none of which was covered by her insurance.
Dr. Guillermo Ruiz Arguelles has performed more than 700 stem cell procedures since 1996. Clinic literature and studies claim than 80 percent of patients experience some degree of success halting the disease's progression or better yet, reversing their disability.
The possibility of remission and maybe more was very encouraging to Rivard, still it was only words until Aug. 12 when she left Somerset and began her own personal search for a cure, a search which would take her across the border into Mexico, to the city of Puebla and Clinica Ruiz.
"It was beyond my expectations. You couldn't ask for better care. Indescribable how fabulous everybody was from a medical standpoint," said Rivard.
According to Rivard, everything went as planned. With the exception of a rash she developed in reaction to one of the drugs she received, she was exceedingly happy with her care at the hands of Clinica Ruiz staff.
"At the clinic, anybody that's involved with the clinic, speaks English. They were very aware of your feelings and how you were doing. I had all these blood draws and injections and not one bruise," said Rivard.
Upon her arrival, she was presented with a book she came to call her Bible of Mexico, a journal describing in great detail every day's schedule, every treatment, every medicine, pill, and injection she would receive during her 24-day stay at the clinic.
Rivard arrived as part of a group of eight patients who all started the treatment regimen at the same time. Divided into two groups of four, she shared her daily routine with another woman from Canada and two gentlemen from the UK, all MS patients like herself. All four patients and their traveling companions were housed in the same apartment complex. Over the course of treatment, they got to know each other.
"You get to know your group very well. One lady was from Canada, the two gentlemen were from the UK and then there were us girls from Wisconsin. So we were all interacting with each other. The four of us stayed in the same building. It had a little rooftop overlooking the city we could go out onto," said Rivard.
The group of four did everything together.
On Monday, Aug. 14, the group left the apartment complex at 7:30 a.m. to undergo a full day of testing and examinations. Blood work at the first clinic was followed by a neurological exam at another clinic, then spirometry testing at a third clinic and finally a meeting with a hematologist and x-rays at a final clinic, before returning to the apartments at 8 p.m. exhausted.
Tuesday began with a trip to a hotel for all eight patients for an orientation to meet all staff members and caregivers in person followed by the first round of chemo at noon back at the clinic. Wednesday, more chemo followed by an injection of Neulasta to help stimulate growth of infection fighting white blood cells. After that, the group settled into five days of a steady routine, blood draws, injections and lab work daily between 7 and 9 a.m. and then again between 7 and 9 p.m.
"Everybody was different. Some of them got sick. I was one of the lucky ones that didn't. I was the envy of our block," said Rivard.
On Thursday, Aug. 24, they extracted her stem cells during a three-hour aphaeresis process followed by five more hours of chemo. Potent chemotherapy is intended to kill off any infections and eliminate MS memory cells in the immune system. Following the chemo, Rivard and her fellow patients entered a neutropenic period during which their bodies are very susceptible to infection. They entered the lock down phase, no one could leave the apartments and masks were required everywhere to minimize exposure to germs and prevent any infection.
"My white cell count got down to 200. It's supposed to be 4,000 - 12,000. Everybody was pretty beat," explained Rivard.
Saturday, Aug. 26, the stem cells harvested from Rivard on the 24th were reinjected followed by another round of chemo. The isolation continued but the healing process was now starting. The stem cells were beginning to grow in an environment cleansed of the previous disease, beginning to repair and reconfigure any neural damage done by the disease. Diet became key.
"They had oatmeal that was really good. I brought some of that home. There was a tortellini soup that was pretty good. I brought some of those packets home too. And then there was some noodle stuff that was pretty good, which you could doctor up a bit," said Rivard.
The following Tuesday and Wednesday, she received more chemo treatments followed by a day of rest on Thursday and a day of local sight seeing on Friday.
"We had blood work done on that Sunday and the doctor gave me the okay to come home early. My white cell count had climbed to 4,700 in 2 days," said Rivard.
On Tuesday, a changeup to the clinic's standard protocol, directed all of the patients to receive a single massive dose of Rituxan. Prior to that date, patients had been given the Rituxan in smaller doses every other month for six months following the return of their stem cells. The new protocol eliminated the need for Rivard to arrange for the infusion of Rituxan once she returned home.
On Wednesday, Sept. 6, Barb returned home, three days early.
"My husband began to notice things were different right away. I don't use my walker anymore. I just use my cane. I'm still tired, but I'm not totally, totally exhausted like I was before. I do my exercises. I can lay on my back and pick my leg up and pull it towards me. I do physical therapy twice a week now. I see my hematologist next week. If he gives me the okay, I can start going back to the gym. Joe and I go for walks every night," said Rivard.
As far as her ongoing care is concerned, Rivard is scheduled to meet with her hematologist next week and her neurologist in early November. She plans to turn over the information from her Bible of Mexico to both and go from there. She's also responsible for completing a questionnaire updating her condition for Clinica Ruiz every three months.
"I'll be happy if I don't have any more relapses and if I don't have to go on steroids anymore. That would make it all worthwhile. But I'm already seeing little bonus things, like being able to move around better. They say expect it to put the MS into remission and anything else is a bonus," said Rivard.
Since returning, she has not experienced any episodes. She plans to return to school at WITC and specialize in social work.
"I'm looking into going back to school for social work, because I want to be an advocate for senior citizens and disabled folks to help them with the system. You need someone that knows what's going on," said Rivard.
What would she tell people considering this option?
"A lot of doctors are against it because of the pharmaceutical companies. A lot of the folks who were in Mexico with me, don't need their MS drugs any more, which are very expensive. You can't put a price on your health. Go for it and don't let your doctors talk you out of it," said Rivard.
How does she measure progress when starting at such a disadvantage, from a place so few of us can imagine?
"Before I couldn't stand to do my dishes even though it's just my husband and I. I'd have to sit down a couple different times. Now I can stand and get my dishes done. And sleep. It's been so long since I've had a solid night's sleep."