EPISODE 9
Making Matters Worse: What Happens When a Patient Complains of an Adverse Drug Reaction
In the second of three mini-episodes, Heather and Lee recap lessons learned from previous guests Dr. David Healy and Dr. Charles Bennett, and look ahead to forthcoming episodes with Andrew Marriott and Dr. Beatrice Golomb.
TRANSCRIPT
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Lee: Yeah, today, Heather, you know we’ve done a couple podcasts, we have a couple coming that haven’t been posted yet, and, you know, we’ve talked to several experts about different things, you know, with Andrew Marriott to do with his experience with the Lariam and we’ve got a podcast coming on the Gulf War illness with Dr. Beatrice Golomb, and then, of course, there’s been lots of conversations in and around the, you know, side effects and harm caused by the fluoroquinolones. But I know that you and I were just talking the other day and starting to piece it together and realizing that what’s happening, despite which toxin or drug that has caused you the harm, the damage seems to be damage at a cellular level, like damage to the mitochondria. And I think one of the things that Dr. Beatrice Golomb mentioned when we were talking with her was if you’ve had a toxicity or you’ve had an adverse reaction to one medication, the likelihood of subsequent to other medications that are less safe will be a higher chance, like a higher incidence of adverse drug reactions. So I don’t know, I thought we might just want to talk a little bit about that.
Heather: Yeah, I think — you know, I think that instinctually, once you have an adverse drug reaction and you connect it, I think you know you can connect that to other — that type of vulnerability, you know, to — because I thought that was really fascinating to hear. You don’t really read about that much — or I haven’t — that if, you know, your kind of the proclivity or the likelihood of future reactions to other drugs, it appears to be something, whether it’s — you know, I know there’s genetic testing now for specific drugs where some people just don’t methylate or metabolize drugs in the same way. Again, another area where if researchers such as Dr. Golomb could get — you know, if it was more a priority I know in the United States for that type of research to be done, it could really avoid a lot of these adverse drug reactions because people would be more aware of drugs they can and can’t take. And there does seem to be a common theme because we keep hearing of this mitochondrial damage that creates the type of issues that we hear about in these different podcasts, you know, and some that we’ve talked about — you know, malaria drugs; we’ve talked about fluoroquinolones. The drugs that were used for the Gulf War, you know, Army members who were — military members who were given that. So yeah, it’s just really interesting at the way it affects the body, and while the symptomology might be a little different, it seems like the core damage seems to be this issue at the cellular level.
Lee: Yeah, which would make sense if you had been harmed by something in your — not at your optimum, that subsequent exposures to different things you’d be more susceptible. And I know a lot of people definitely have reported that. There is also — I think you mentioned — probably a genetic component. Why is it that, you know, with even the fluoroquinolones — I think very dangerous medications — I think a lot of people actually have been affected that don’t even know because the symptoms are those that can be — you know, if you’re elderly, joint pain, fatigue, memory loss, brain fog — those could all be attributed to what people would say is age and not make the connection. But there are certain people that seem to be more susceptible for sure. So I know that — you know, I think there definitely needs to be more research on the genetic component, but I think it might be interesting to try and find some experts that talk a little bit about what do you do, you know, like, when you had an adverse drug reaction and you know that potentially your mitochondria has been damaged? Like, what kinds of things and treatments — you know, without slapping on a whole pile of more pharmaceuticals — can people do? I know personally what Charlie — what, you know, helped, I believe helped with her. But it would be really interesting to either talk to more people what worked or even to find maybe some expert that has — you know, I know Dr. Golomb sort of touched on some and that will come up in her podcast coming forward. But it would be nice to dive a bit deeper into what works because, you know, it’s one thing to have these side effects and to be harmed, but a lot of the question is, now what do I do? That certainly was my first question.
Heather: Yeah, and the danger and the need for this was kind of two-pronged, but unfortunately the first reaction from most health care providers, when there is a complaint of an adverse drug reaction or there’s a complaint that a medication — I think we see this a lot with psychotropic drugs causing anxiety, causing issues. The first response is often increasing the dosage or messing with the dosage of that drug, which is just really incredible to me because if you’re reacting badly to a drug, the last thing you need is more of it, or more of a drug like it, because if there does exist this kind of threat or propensity to have an adverse reaction to a drug, and it is broad in that respect, you know, it just seems like that has to be given some weight on behalf of the health care system in determining, you know, how to address what the patient is going through, and that’s rarely done. You know, I know in my circumstances with my son, I talk about it a lot, there was no effort to address the underlying issue, even if they didn’t believe him when he told them he thought he was having a reaction to the drug. It was just completely sidetracked, and you know, that happens, so then, you know, “let’s give you more of the drug you’re taking because it certainly can’t be from that.” In this case I’m talking about anxiety drugs, when they start making people have more anxiety, and it’s even on the labeling of a lot of them, especially when you’re dealing with benzodiazepines, but they’re given more. And it just really takes a situation from being, you know, dangerous to fatal. And I think, you know, that’s an area that really needs to be looked at. And I know there’s testing out there. I would love to have someone who knows a lot about the genetic testing come on because I know they test for different drug classes. But I believe the reason that’s not happening is because the way our health system is set up, certainly in terms of the pharmaceutical industry, is in order to make the profits, you’re going to make more profits if you could broaden or widen the use of the drug, you know? So we have drugs that are specifically for certain ailments that are being used for a host of other issues in order to — what I believe is to increase their sales, which just really, you know, creates a big problem also because people are getting drugs that aren’t even really, in a lot of instances, for the issues they’re presenting at at the doctor.
Lee: Yeah, it’s sort of a cascade where people come in with symptoms — I know that was the case with my daughter — had all these symptoms; they said, well, even if it was a drug reaction, the drug is out of her system. They didn’t recognize the delayed reaction, which we’ve talked — you know, even with Andrew Marriott, he talks about the Lariam.
Heather: Yeah. The damage is done, you know?
Lee: Yeah, true. But then their next thing is — because I think that they go, you know — I hope this is going to change but the medical profession wants to help, and I think quite often the solution they think is more prescriptions. “Well, let’s just treat those symptoms,” which in the case of my daughter it was going to be — I think there were four or five doctors that recommended corticosteroids, which we now know, from the stuff that came out at the European medical meeting, was that that actually made people worse.
Heather: Contraindicated, yeah.
Lee: Yeah. And I think I had read that at the time and made the decision. It wasn’t any informed decision because nobody informed me, but I informed myself and realized that that would actually be not helpful, actually probably make her worse. So I’m happy that I at least made that decision.
Heather: Yeah, I mean just, for example, when Shea had his nasal surgery and was given that large dose for a long period of time of Levaquin, they prescribed it with steroids, which increased the likelihood. You know, this was a kid that never took a lot of medicine, you know? And you read about that, and if I as a layperson can go and read about that after he passed away and I’m looking at these scripts he was giving him and, you know, the research he had done that no one listened to, it’s just really mind-boggling, you know, because it’s like, if I can find this and you’re a health care provider and you took an oath, you know, to do no harm — you know, how did we even get here? It’s just — it becomes very frustrating.
You know, recently I’ve been traveling. You know that. I was just recently in Turkey and prior to that was in Barbados for a while. What’s really interesting — and I think as a backdrop — you know, we’re one of the few countries, the United States, where you can actually advertise these drugs, especially on television, you know? You don’t see this all “ask your doctor,” “ask your doctor,” you know, about specific drugs. I think — I would have to look it up, but I think it’s just the U.S. and New Zealand. I’m not positive. I would have to look that up. But it is, when you’re kind of watching television in other countries, it’s amazing because we don’t realize how inundated we are with that here in this country. And I know, you know, when people who aren’t from here take note of that and watch, it’s really surprising to see those type of advertisements on TV.
Lee: Yeah, and that really makes a difference. I remember when I was practicing in asthma education and the drug Singulair, which was a medication, a pill form for treatment of asthma came out and it was all over the — because, you know, in Canada we obviously get a lot of the U.S. stations. And we had a swarm of parents coming in wanting that medication for their child, and, you know, many of them went on it and, you know, personally I put my son who had asthma — you know, through the allergist, he went on that, and it was like Dr. Jekyll and Mr. Hyde. He was only about six or seven, but I’m like, who is this kid? He became so aggressive and couldn’t sit still. It was just crazy, and I thought, oh, that’s weird. And of course, this was before all my experience to do with Charlie so I wasn’t as in tune with all these adverse drug effects; I just assumed, you know, it was prescribed, it was safe, it was on the market. But I had to stop because I made the connection. And after I stopped he got better. And I even went so far, when I brought it up to numerous physicians, they said no, it’s not listed as a side effect. I actually put him back on and within a day, you know, his dad was like, is he back on the medication because he’s, like, crazy? And he was. And we had to stop again. And then afterwards there were numerous parents that came in reporting this. We now know that there’s been a lot of literature that’s come out on those medications that that’s exactly the side effects that it causes. As a matter of fact, there’s been kids that have committed suicide on that medication. So, yeah, I mean, what’s safe at one point, you know, it needs to be continually reevaluated, and these doctors need to continually look at the data and the research. But we go back to what we were talking about in a previous segment was the importance of reporting. I never reported that. I had no idea back then; even as a, you know, practicing nurse back then I had no idea that I should have probably reported that side effect in my son.
Heather: And I think the bottom line is anecdotes are important. They are important. You know, it’s really frustrating and maddening for me to watch now with the VAERS reporting because there doesn’t — you know, there seems to be a real push to silence or just to avoid any adverse reporting, you know, during the pandemic and now with the COVID vaccines, and the attack has seemed to be — in terms of VAERS, you hear a lot of reports now — I was watching a major news station and where they were — you know, they had a doctor on and he was saying, well, you can’t trust that; you can’t trust that data because it’s so — a lot of it’s self-reported; it’s reported by patients and they don’t know that that’s — you know, they don’t know enough to correlate it or to know, so, you know — and just shame on them, shame on that, because, as we’ve seen, all the changes we’ve seen in the drug labeling, the things I’ve fought for for the drugs my son was given, anecdotes are important; that’s where it starts. And if they were doing their job in these random control trials, we wouldn’t have this issue. Unfortunately, it’s been put upon us as the public to figure that out. But yeah, you know, I hope that there remains a balance. Yeah, maybe there is some errors in reporting, as there is with everything, but to really malign a report because it’s coming from the patient who, in some people’s views, doesn’t have the expertise to make that judgment. We know our bodies better than anyone, you know?
Lee: Right, and I think that Dr. — you know, in the podcast that we did with Dr. David Healy where he, you know, said the mother’s hunch is usually right, I mean, it’s not only the anecdote of the patient but of the parents or some significant other loved one as well that are noticing these things. And we have to listen to that.
Heather: Yeah, what was so fascinating about David Healy’s — you know, he’s a wonderful man, brilliant researcher, brilliant mind. I don’t think anyone could argue with that, even those who might not care for him for a variety of reasons. But what shaped his whole life, you know? His mother losing a child, losing his brother because a health care provider chose to make the determination that she was just hysterical or overbearing or overprotective, whatever — I don’t know the situation — but to give someone a tranquilizer because they believe there is something wrong with their child. I mean, that’s unforgivable. And yeah, doctors miss things, but when treatment or whatever you’re doing or not doing becomes destructive and a patient worsens, I mean, you have to have the flexibility and the willingness to set aside your ego to say, you know, science is question and error, and if you can’t question yourself, you have no business being a scientist, a health provider, a doctor. You know, this isn’t — is not about individuals and it’s just — you know, to hear that — I always wonder why he helped us all because — I mean, I guess from all I’ve gone through, sometimes I get a little bit of a jaded view — (laughs) — of, you know, how much people are willing to do for each other. And you know, it’s just interesting how these stories have shaped us and shaped some of the people we’ve talked to and provided the impetus to speak out and to really try to make a difference. And I think everyone — we heard from Dr. Charles Bennett. Look at what he’s gone through for speaking out, you know? And that was by being a good scientist. I’m not aware of him going through any adverse drug events for himself or his family, but really being what a scientist does: questioning the data, looking at all angles, and not disregarding anything. And, you know, look what happened to him. It’s just really unconscionable.