On the whole, Lisa Marks Smith would rather have had the flu. Instead, the Cincinnati mom of two college-age sons got a mercury-containing flu shot that nearly killed her, led to paralysis, severe neurological problems, 24 days in the hospital – and a check from the Vaccine Injury Compensation Program that attests to the truth of her story.
Smith has come to see first-hand how carelessly flu shots are administered, how dangerous the mercury that remains in most of them can be, how little public health officials actually seem to care when the worst happens, why the worst may not be so rare after all – even how similar the side effects can be to symptoms of autism.
She talked to Age of Autism about her ordeal, which began in 2005, in the hope of sparing others.
Dan: I thought I’d start by asking you where things stand now. How’s your health? How are you feeling at the moment about everything?
Lisa: The only lingering thing I have at this point is that if I do not take big doses of magnesium, my legs shake. And I mean muscle spasms, Charlie horses, twitches – think Parkinson’s shaking. I do feel my feet again after four years. I need to go shoe shopping because I only own sandals, and it’s cold this winter in Cincinnati, and if you feel your toes you can’t wear sandals in the snow.
Dan: Well, I guess that’s a good problem to have, considering what happened. Just to go over the basics, you got a monetary award from the vaccine injury compensation award program and it was how much?
Lisa: I am not allowed to tell but in all honesty the award would not have covered my medical bills. To me, it’s the validation – they can’t claim they don’t know what’s happening when they’re paying people.
Dan: And of course one thing we hear so much about, and it’s almost a cliché, is that correlation does not equal causation – in other words, "just because you got a flu shot and then got very sick doesn’t mean it caused it." But in this case, correlation was a very strong indication of causation.
Lisa: In my case, my neurologist said straight up, this is what caused it. So it’s very hard for them to say one doesn’t equal the other. You’re walking around, you’re perfectly healthy, you don’t even get colds. You have a flu shot and within two weeks you’re paralyzed, and paralysis is listed as a possible side effect.
Dan: One thing I’ve experienced, spending time with families on our book tour, is I used to think the symptoms of autism occurring immediately after vaccination were very rare, and occasionally when they did occur pretty quickly, that was an important clue. But, man, there is a lot of this – families describing these very close correlations, I guess you might say, between getting a vaccine, getting ill, and then having the onset of these symptoms. My feeling is, how long can this go on? And you must wonder the same thing in the case of the flu shot.
Lisa: I get these constant calls. The lady two houses up has Guillain Barre syndrome [a paralytic reaction] from a flu shot. My old boss, her mother-in-law got Guillain Barre from a flu shot. A woman I used to work with in California, her mom had Guillain Barre from a flu shot.
Dan: And that’s a pretty small universe.
Lisa: Yes, in our little world here in Cincinnati, to know that many people? And that’s what my neurologist even says. She says, "Lisa, it can’t be that rare," because she has five patients with it – "If it’s one in a million," she says, "I don’t have five million patients." One guy’s still at Drake Hospital, which is the long-term care facility here, one man died, one woman’s still in a wheelchair. One of the times I went into see her she said, "Oh my gosh, because of you I looked so smart the other day. They brought this man in, he was shaking, he looked all over again like your case – paralyzed, shaking, you couldn’t touch him, he would just scream. I ran over and said, 'Oh my God, did he just have a flu shot,' and they said 'Yes, two weeks ago, how would you know that?' And everyone said, 'Wow, she’s so good,' and the neurologist said, 'It scared me to death. He was like looking at you all over again.'
"I said, 'How is he?' And she said, 'He’s dead. It killed him. He was older, you were so healthy. Your heart and your body could take it. His couldn’t.'"
Dan: Just for the record, take me back to 2005. You went to get a flu shot at a drug store?
Lisa: Yes, my dad was having knee replacement surgery and I thought – bad plan – I don’t want to get sick. I told my mom, "I’ll stay overnight when he has it so you don’t have to stay at the hospital." So my mom called and told me they were having them at CVS so I thought I’d go up there after my son’s soccer game.
In one way, I was very lucky, because my brother came in when I was in line to get one. Later on, they [the Department of Health and Human Services] said I couldn’t prove I had a shot, because since I had it at CVS it wasn’t in my medical records.
Dan: Didn’t they at least take your name down at the drug store?
Lisa: They did, and I could prove it. But at one point they said, "You can’t prove you had the shot, you don’t have the receipt." And I said, "Well, I was kind of busy being paralyzed. I really wasn’t concerned where the receipt was."
Dan: That’s one thing I wonder about now, when you can get a shot just about anywhere including the airport and you can get it at the big box retailers. What is happening with VAERS and follow-up and statistics?
Lisa: Nothing. Because my brother happened to be there when I got it, it made it harder for them. But originally they said, you can’t get compensation because you can’t prove you had the shot. So people had better hold onto that receipt, because how many people have a witness?
Dan: You got the shot and then …
Lisa: Right away, I knew I didn’t feel right. By Tuesday, my son had his orchestra concert and I called my parents and said, "I don’t feel right. I don’t feel bad, but I don’t feel right." I said to my dad, "Don’t come, because I don’t want to give you something before your surgery."
By Friday night, my friend Jackie and I went out to a craft show and I said to her, "I have a tickle in my throat." By Sunday I was so sick, but couldn’t get into the doctors. By Monday I said to my husband, “I think I’m going to die.” He took me to the emergency room. They said I had pneumonia – another hospital later said I absolutely never did have pneumonia. They put me on an antibiotic. I went home. Within a week, I just simply felt bad all day, I was laying on the couch, I couldn’t get up off the couch. And I couldn’t move to go get a phone to call for help. I just had to wait for my son to come home from babysitting to call somebody because I couldn’t move.
Dan: So you went to the hospital …
Lisa: The ambulance then took me to a hospital that doesn’t have a great reputation, but that’s where they took me – I was too sick at that point to argue. They told me there was nothing wrong with me, that all my symptoms were psychogenic in nature and I should just go home and see a therapist.
Dan: What kind of wacky idea is that? I mean even …
Lisa: And I’m paralyzed! A friend of mine who works there came in and said, "Look, I’ve known Lisa 20 years, she’s not crazy." Another friend of mine, a doctor, came in, he said to the neurologist, "Look, she’s my neighbor, she’s perfectly healthy, there’s nothing mentally wrong with her, she’s sick."
Dan: Did you mention the flu shot? Is that why they thought you were crazy?
Lisa: They asked me immediately when I got there if I’d had the flu shot, but with Guillain Barre there’s a protein in your spinal column – that’s why they do the spinal tap – and I never had that protein. I even said to the guy, "Listen, I can’t fake symptoms in my sleep. I shake in my sleep. It wakes me up. My feet stay 'dropped' [pointing down] in my sleep. If I’m holding my feet in that position for whatever reason, pretending, they should come back up when I go to sleep. And they don’t." I said to them, "It scares me that I know that and you don’t."
Dan: And it sounds so much like Desiree Jennings, where she was treated with the attitude, well, she’s a cheerleader, she’s got no brains, she can’t possibly be exhibiting these symptoms from a little old flu shot.
Lisa: Exactly. That’s exactly what they keep telling me, "You should just go home and see a therapist." I said, "I can’t go home and see a therapist because I can’t move."
Dan: [Laughs] I’m sorry to laugh, but it is sort of sick.
Lisa: It was insane. Luckily my brother used to work with the head of this good neurology group here in Cincinnati, and he called him and said, "Send somebody to meet my sister." And he did. The ambulance came and transferred me [to a better hospital]. But the first hospital kept trying to stop them from transferring me – they were saying, "Your insurance won’t pay the bills if you transfer." The insurance company said, "That’s not true. Go."
Now I’m lying there paralyzed, being lifted on to the stretcher, being put into the ambulance to be taken to a second hospital. Here comes the nurse, she’s carrying a shot. She said, "Oh, because you had pneumonia, we’re going to give you a pneunomia vaccine." And me being a cusser when sick, I said, "Are you f-ing crazy? Are you out of your mind? I’m lying here paralyzed, possibly from the flu shot, and you think you’re going to give me another shot." I said, "If I could move, which I can’t, I would sit up and break your f-ing arm." My friend’s going, "Stop it, they already think you’re crazy. You’re not helping." I said, "Which one of us is crazy? It’s not me!"
Dan: So things started getting better once you got to the new hospital?
Lisa: Yes, I got to Christ Hospital and they knew in two hours. I got checked in and the doctor comes in and I say, "I am not crazy," and the doctor says, "Oh, we already know that." I said, "How can you already know that?" And he says, "One blood test. If they had done one blood test – the protein level in your blood when you got to the [first] hospital was 60, and they never rechecked it, which is standard procedure to recheck it every 8 hours. You are now 900. Yours should be below 100. It shows you are very, very sick."
Dan: So what did they do to get you better?
Lisa: They put me on an MS medicine which relaxed the muscle spasms in my leg which then stopped the muscles from destroying themselves.
Dan: How long was your recovery period?
Lisa: I was in the hospital 24 days. You could have two heart transplants, I think, and not stay 24 days. From that point it was just a matter of letting everything grow back, but I call it Barbie feet – foot drop, where it damaged the peroneal nerves in my legs. Not only couldn’t I feel my feet if you touched them, but my heels wouldn’t touch the ground.
So you wonder: autistic kids toe-walk, and that’s how I walked. Up until last October I couldn’t put my heels on the ground. Even my physical therapists – two big guys – would try to push my feet into place. They couldn’t. So it’s like, OK, how do you know that kid’s peroneal nerve isn’t damaged?
Dan: Now you’ve determined this shot had mercury, right?
Lisa: Yes it did.
Dan: Tell me what your conclusion is about flu shots.
Lisa: I tell them there are safer ways to get it [than with mercury]. But if you’re healthy like I was, I just don’t see it as worth the risk. I was a very healthy person. That should be the definition of irony – you know, you’re very healthy, you get a shot so you don’t get sick, that shot ruins your health.
Dan: Before this happened, I assume you hadn’t paid a lot of attention to vaccine issues and autism?
Lisa: No, unfortunately not.
Dan: What do you think now?
Lisa: I find it scary how little we know about what it does to your body long-term. I find it frightening that the CDC and all these researchers really don’t want to know. Because one of the things even my neurologist had said at one point was, "They should study you, what makes you different that you would have this reaction." But they don’t seem really interested in finding out why. They want to say it’s not this – it’s kind of like fillings in your teeth, they want to say it’s not bad for you because then their liability would be there.
I think unfortunately pharmaceutical companies rule our country to the point you’re not going to know. I guess I’m just really astounded though, at how little is known, how bad the studies are.
Dan: And are you talking about mercury, vaccines?
Lisa: Mercury and vaccines in general. Like this year’s flu shot, where for older people it’s four times stronger. That’s somebody’s theory that that works. It was never tested. You’re the guinea pig. That’s kind of frightening to me.
Dan: Did any of your symptoms besides the toe-walking match reports of what autism is like?
Lisa: I had neurological damage. I had no short-term memory at all. So literally, if you called me and said your dad just died, tomorrow I probably wouldn’t remember that. The other thing that I had was everything was equally loud. So in the background right now, I hear the radio playing, but that doesn’t overwhelm me. But before, I would never have been able to do that, because I would have heard every little noise equally loud.
We were at Ohio State one day at a thing for my son, and I said to my husband, "I wish the aerospace engineer in the back row would quit clipping his fingernails." He’s like, how do you know that? I said, "Because I can hear it. I can hear the lady getting in her purse to get the keys, I can hear what the kid in the front row is saying." We were at one of Matthew’s orchestra concerts one time with my son Nathan sitting next to me, and he said, "What are you doing," and I said, "I wish the kid down on the floor of the middle school would quit saying, What the f---?" I could hear what every individual on the floor was saying as loud as you sitting next to me.
He says, "You know that’s not normal, Mom." And I said, "Yes, I do, because I didn’t used to hear this way."
Dan: Imagine if that is what you heard when you were three years old.
Lisa: That’s what I said to him – "Nathan, this isn’t normal, and I work really hard to block all that out and not to be places that overwhelm my senses, but what if you didn’t know other people didn’t hear this way? The world would be an extremely overwhelming place with all this stimulus going on constantly."
Dan: You could see how that could have a serious downstream effect on a person. It’s not the behavior that’s being triggered initially, it’s the assault on the senses and the confusion that then leads to various kinds of responses.
Lisa: I made my husband take the surround-sound out of the house. We didn’t go to movies where it was really loud. I couldn’t tolerate it. I can still hear some things really loud that I know probably some other people don’t hear. I have a friend who has guardianship over an autistic man, and when I told her what I was experiencing, she said to him, "Richard, Lisa hears everything equally loud." He responded, 'Yes, doesn’t everybody?"
She said "No, they don’t. And it made such sense to her then. They always thought he spied on them. He would be downstairs in the basement. They would be up in their bedroom talking, and he would know what they talked about. And I said, "Well I could hear that. I could be upstairs in my bedroom and hear what people are saying in the basement – with this, not before."
Dan: You could almost call that a savant quality. It’s something that most people can’t do, but yet, who wants it? Who needs it? Obviously the mind can do all kinds of interesting and weird things but at what price and for what reason? You have to say that your hearing was in a sense better, and that’s kind of amazing, but it was also very destructive of your well-being.
Lisa: I was thinking more like it was a brain thing. My brain couldn’t filter things out …
Dan: Ah, I see …
Lisa: Where normally you filter the things out you want to hear or not hear. For example, as I was telling you this story, I wasn’t hearing the radio playing in the background. But before, I would not have been able to filter it out.
Another thing I had, kind of like a Tourette’s thing but not that intense. If somebody walked by and I was thinking, Wow, her butt’s fat, that came out of my mouth. So while you and I were sitting here discussing the neurological things, I might just go, "Fat butt." Because whatever I was looking at at the time – like right now, I’m looking at a bowl of M&Ms, I might be telling you this story and just go, "Bowl of M&Ms". You’d go, What? And I’d say, "That’s what I was looking at and it just came out."
Dan: I have a friend whose son had celiac disease and Asperger’s. They worked very hard and recovered him from Asperger’s – but then he got Tourette’s. You get the sense that all of this is brain injury manifesting in one way or the other at one time or the other in ways that can’t necessarily be predicted and can’t necessarily be stopped. It’s just horrible.
Lisa: I had mercury in my brain. I had chelation therapy. I had a high mercury, lead, cadmium and aluminum level. My body for some reason doesn’t process metal well, so then the shot just put me over the edge.
Dan: So you think the mercury in the shot was a big part of it, not just the vaccine itself?
Lisa: Yes. One of the theories the doctor at Christ speculated was the possibility that mercury is heavier, it could settle at the bottom of the bottle and the nurse didn’t shake it up. So I got a “mercury shot.”
If you’re not allowed to own mercury thermometers because that is so deadly, why are you allowed to inject that into your body? You’re not allowed to play with that in the science lab anymore, but really? It’s in the shots? And most people don’t realize it’s in there. Or they’ll say it’s been removed.
Dan: Or that it’s a trace amount, whatever that means.
Lisa: I don’t care if it’s a trace amount. Would you eat a trace amount of plutonium?
Dan: It just is so astonishing to me that the federal government and the pediatricians said in 1999 that mercury should be phased out of all childhood vaccines, and that just as a general principle reducing mercury exposure as much as possible was a good thing, and then here it comes in these flu shots for infants and pregnant women …
Lisa: All I say to pregnant women is, "When you bought your car seat, didn’t you research it?" And they said, "Of course we did, we bought it after reading Consumer Reports." I tell them they need to read the vaccine insert, too – "not tested for safety and efficacy in pregnant women." If you read that, I doubt you would take it.
I tell people this would be like reading a bad novel or watching a bad Lifetime movie, if it hadn’t happened to me. To have the CDC say I couldn’t prove I had a shot, when I could tell they had my record because they had recorded my vaccine lot number in my file …
Dan: So ultimately, they paid you.
Lisa: Yes, but even then, I’ll never forget I was laying in the hospital, my friend Jackie comes running in and says, "Oh my god, Lisa, they know this happens. I Googled 'flu vaccines reactions,' there’s a whole program that pays you."
They don’t tell people that. And most people don’t know your doctor has no liability.
Dan: It’s amazing when you watch the coverage on TV or the Web from these mainstream outlets, it’s like getting the flu shot is practically a civic duty and protects other people. The idea that any reactions are so rare …
Lisa: I guess whether it’s worth the risk is whether you’re the one that ends up paralyzed.
Dan Olmsted is Editor of Age of Autism.