God, Hope & Helping Others
A nurse told me to call my family. It is very difficult to tell your children good-bye forever. It was the most heartbreaking moment of my life.
Lisa Marks Smith was born and raised in Cincinnati, Ohio. She is married and the mother of two sons. She is self-employed, working for Icon Beauty. Following her flu shot and near death experience in 2005, she learned about alternative therapies that have helped ease some of the problems of post-infectious myositis. When not advocating against mass vaccination policies, she spends time with her family, makes jewelry, and enjoys being alive.
October 15, 2005, started like any other beautiful fall day. We rose early and went to my son Nathan’s soccer game. While we were there, my mom called to say that CVS Pharmacy was having a flu shot clinic. My dad was having knee replacement surgery in a few weeks and could be vulnerable to infection. We wanted to be sure that I did not get sick. After the game, I drove to the CVS store and registered for the shot. While I was there, my brother Jeff came in for his shot as well. We received the standard disclaimer form. Nowhere did it say this would be the last normal day I would have for four years.
The truth is, I did not put any thought into whether to get the shot. It was just a quick decision, but one that would change my entire life. If I had taken the time to do a little research, I like to think I would have skipped the shot. I had taken the shot one other time with no adverse reaction when the Health Department had offered them at my church.
Within days of getting the shot, I knew something was wrong. I called my parents and told them to skip my son’s orchestra concert on Tuesday. I wasn’t feeling right and didn’t want to get my Dad sick before his surgery. When I set up at a craft show with my friend Jackie on Friday night, I complained of a tickle in my throat. I woke up terribly sick the next morning. The first appointment I could get with my family practitioner was Monday. By Monday, October 24th, I felt like I was going to die.
That morning, my husband, Greg, rushed me to Mercy Hospital in Western Hills. I was discharged the same day with a diagnosis of pneumonia. They gave me antibiotics and other medications, but I never improved. Early the following Saturday Greg and my son Nathan left on a scheduled Boy Scout camp out. When I woke up, my legs were strangely weak and they continued to get weaker throughout the day. By evening, I could no longer stand or walk. I was home by myself and had to wait alone and in pain on the bathroom floor for my older son, Matthew, to come home from a babysitting job and call for help. I had never felt so powerless or in so much pain.
Matthew finally came home and called my brother, Jeff. Jeff carried me into the family room, but just moving me was painful, and he called an ambulance. The paramedics had to hoist me onto the stretcher, as I was unable to use my legs. The pain was tremendous. If anything touched my legs, I cried out in agony. The ambulance took me back to Mercy Hospital. Right away, the nurses started to ask me if I had received a flu shot. I wondered why everyone kept asking. At that point, I had no idea that spreading paralysis or Guillain-Barré Syndrome (GBS) was a known side effect of the flu vaccine. After several hours in the emergency room, they moved me to a regular room. A nurse urged me to go to a different hospital, one with a higher level of care. I wish I had listened, but I was just too sick to act. The nurses felt that I should be moved to Intensive Care, the paralysis was spreading and they could not provide the level of care I needed. I spent several days in intensive care. A nurse told me to call my family and get my affairs in order. It is very difficult to tell your children good-bye forever. It was the most heartbreaking moment of my life.
Nothing improved over the next week. I had two spinal taps, multiple IV’s, and more tests and doctors than I can remember. I was on the strongest pain medicine available; nothing relieved the spasms and pain in my legs. I couldn’t bear the weight of a sheet on my legs. All I remember from this period was the overwhelming pain. At one point, I could only move my head. My feet dropped and my legs were totally limp from the damage to my nerves. To this day, friends still comment on how my feet lay parallel to my legs.
The Mercy neurologist told me nothing was wrong with me. He said my symptoms were psychogenic; in other words, I was crazy and making up this entire disease. I asked how I could fake symptoms—including shaking and dropped feet—in my sleep. He didn’t respond and instead forced me to do physical therapy, which further increased my pain. The neurologist ignored my neighbor, a doctor, who told him I was sane. He ruled out GBS since I didn’t have the protein in my spinal column that normally happens with GBS. He never considered transverse myelitis or post infectious myositis, well-known vaccine injuries with similar symptoms.
Greg and Jeff arranged to transfer me to a better hospital. Mercy tried to dissuade me from leaving. The caseworker insisted my insurance would not pay for the transfer or cover the bills. My Cigna representative assured us this was not true. While I was waiting to be transported to the new hospital, a nurse approached me with a syringe. I asked her what it was. The doctor had ordered a pneumonia vaccine! I told her if I could move, I would break her arm. I was furious. I was lying there paralyzed, possibly from the flu vaccine, and the doctor had ordered another vaccine.
When I got to the Christ Hospital in Cincinnati, things improved immediately. Within two hours of my arrival, Dr. Rajan Lakhia, had a diagnosis. He said, if the Mercy neurologist had simply repeated the creatine phosphokinase (CPK) blood test for muscle degradation, which was standard procedure, he would have noticed the protein level in my blood was extremely high. Anything over 100 is a problem. At Mercy, they only checked once and it was 60. When I arrived at Christ, the protein level was at 900 and had climbed to a high of 1,600. The muscles in my legs were breaking down. Despite the bad news, I wanted to cry with relief because they had proof that I was sick. One major hurdle had been cleared. I could focus on getting well.
I felt safer at my new hospital. The nurse put in a peripherally inserted central catheter (PICC) line to deliver Dilaudid so I wouldn’t require so many IVs. After five days at Christ, the protein level began to drop. Muscle damage had stopped, and I regained some movement. I could use my arms and sit up. I was able to support myself enough to use a portable toilet—a wonderful improvement after two weeks of lying flat on my back. The nurses told me about another patient who was paralyzed by the flu shot. When I asked how she was doing, they didn’t answer. I later learned that she never recovered.
Dr. Lakhia fought with my insurance company to get me intensive therapy. I was scared to go to a long-term care facility; I felt like I would be forgotten there. Instead, Christ transferred me to the acute rehabilitation unit. The therapy was grueling. Propped up, I stumbled two steps. I had “Barbie feet”—my feet pointed straight down and my heels would not rest on the floor. My immune system had destroyed the muscles and nerves in my legs. My official diagnosis was post-infectious myositis due to the flu vaccine.
I spent the next two weeks in the rehab unit learning to walk again. I had four hours of therapy each day. Braces forced my swollen feet into the proper position so I could walk. I missed wearing my regular shoes. They wouldn’t let me go home until I could dress myself and navigate without help. I had to learn how to get in and out of a car safely, how to get off the floor if I fell while home alone.
My occupational therapist wanted to see if I could make a bed. I told her I needed practical skills, for example, how to carry a food tray while using a walker. The therapist put a few balls on a tray and had me practice walking. It helped to laugh. I hadn’t laughed much in the last few weeks. My doctor ordered a psychiatric exam to see how I was coping. I told the doctor I wasn’t so depressed that I wouldn’t do everything in my power to recover. I wanted to go home. She ruled me emotionally healthy and well adjusted. One day, I nearly fell when trying to get to the bathroom. I cried with frustration that I wasn’t getting better fast enough. The nurses told my mom they were glad to see me cry. They thought I had been too stoic.
I sobbed every time Greg and my boys left. I wanted to go home so badly. However, family and friends came to see me constantly. The nurses saw all the flowers and visitors, and teased me that I must have been a lot of fun to be around when I was well. They said they would go to my house for a party when I recovered.
I went home on November 22, two days before Thanksgiving. I had been in the hospital for twenty-four days. I had to promise not to drive or go up and down the stairs without someone watching me. Matthew and my neighbors took turns driving me to therapy three times a week for twenty-two weeks. After all the hard work, I am proud to say that I don’t limp.
My neurologist said that traditional medicine could do nothing further for me. She confirmed all of my problems stemmed from the flu shot and encouraged me to try alternative medicine.
I filed my own report with the government’s Vaccine Adverse Event Reporting System (VAERS). Only one doctor ever mentioned the possibility of filing a report. The doctor who performed my EMG’s at Aring Neurology told me that the flu shot paralyzed another of his patients. She has a diagnosis of transverse myelitis and is permanently confined to a wheelchair. He showed me her VAERS report. My VAERS ID is 251221.
Although the media has not been interested in my story, people with flu shot injuries continue to bombard me with messages. The official estimate of vaccine injury is one in one million people. My experience tells me otherwise:
My neighbor, Chris Sullivan, sat next to a woman on a flight to Cincinnati to see her brother who was just paralyzed from a flu shot.
A friend, Tracy Kroger, developed Guillain-Barre Syndrome from her flu shot. Tracy still struggles to use her arms.
I recently reconnected with a high school friend, Marianne Madaris. She has Rasmussen’s encephalitis, also known as chronic focal encephalitis. While in nursing school, Marianne didn’t have any vaccine records so they required her to repeat her vaccines. The doctors later told her that the encephalitis was caused by the MMR vaccine. Marianne has been sick for twenty-one years. She remains today in the same condition that I was in at the hospital How rare can these reactions be when I seem to be adding to my list of vaccine victims every week?
In April 2006, I hired the law firm of Douglas & London, P.C. to pursue a vaccine injury claim through the National Vaccine Injury Compensation Program (VICP). A lawyer at the firm, Nicole Gurkin, told me that I had a strong case since my doctor was willing to state for the record that I had a vaccine injury.
Most people have no idea that vaccine makers are protected from most liability by federal law. They are equally shocked that our government compensates people for vaccine injuries. The federal agency that oversees the VICP added the flu vaccine to the table of compensable injuries in July 2005, just three months before I was injured. To collect, you have to prove that a vaccine caused damage lasting more than six months. My attorney requested affidavits from my family and friends who could describe how my life had changed after the flu shot.
At one point during the case, the Special Master (judges do not administer the program) told my lawyer that I couldn’t prove I ever had the vaccine. Following my paralysis and hospital stay, I couldn’t find my flu vaccine paperwork. I pointed out that my VAERS report contained my lot number. Since I hadn’t given the CDC or FDA that information, they must have obtained it from Maxim Health Systems. Maxim never responded to my request for this information. The nurse who administered my vaccine didn’t complete the section of the form containing the lot number. My attorney had to file a Freedom of Information Act (FOIA) request to get a copy of the bill from the government. Jeff and Greg filed affidavits that I went to CVS Pharmacy; Jeff confirmed that he witnessed my shot. I was lucky. How many people can provide a witness to their shot? In July 2009, Special Master Christian Moran ruled that a preponderance of the evidence supported my clam that I received the flu shot. Although I have high mercury levels, we kept quiet on that point. My lawyer told me if we made the briefest mention of thimerosal, the mercury-based preservative in my flu shot, I would get nothing.
It took over three years to receive official acknowledgement of my vaccine injury. In December 2009, I received a phone call from my attorney that the government had conceded my case. There would be no trial; I was to receive a settlement. I was elated. The money would help pay for my out-of-pocket treatments. Most importantly, though, I felt vindicated. The government agreed that a flu shot caused my medical problems. If you Google my name, Lisa Marks Smith, and HHS, you can read the court papers. I received a settlement, which would not have covered all my medical bills. It is a blessing that I had health insurance.
The check arrived May 27, 2010, nearly five years after the fateful shot. Since then, I have heard about many vaccine-injured people who have not received compensation. Based on my own experience, I know it isn’t easy.
Wherever I go, I talk about the dangers of the flu shot. The fall is an especially difficult time for me, when the big push for flu shots is on. A few weeks ago, a Walgreens clerk asked if I wanted a flu shot. I told her it took me four years to recover from my last flu shot. She didn’t know that the flu shot could cause paralysis. Visibly shocked, she said that our conversation would make her think twice. Every aisle in Walgreens has merchandise tagged with “get your flu shot” stickers. I see them at other drug stores and supermarkets, too. I wonder who pays for all of these promotions. I still find it difficult to accept what happened to me. I am deeply fortunate because I got better.
How many people know that one simple flu shot could change your life forever? It’s ironic. Vaccines are supposed to be safe and effective. Vaccines are supposed to keep us healthy. Before my flu shot, I was so healthy. Had I gotten the flu, I probably would have been sick for a week or two at most. With the shot, I was sick for years. Don’t think a vaccine injury can’t happen to you. It can. I don’t tell people not to vaccinate. But I tell my story.