Mefloquine Toxicity with Dr. Remington Nevin
READ the blog here: https://cck-law.com/blog/va-disability-for-mefloquine-toxicity/
- What is mefloquine? Larium?
- How did Dr. Nevin start studying mefloquine?
- How long has the U.S. military been using mefloquine? During which conflicts?
- Symptoms of Mefloquine Toxicity
- When does mefloquine toxicity typically start after taking the drug?
- How long do symptoms of mefloquine poisoning last?
- Does the military still prescribe mefloquine?
- Service Connection for Mefloquine Toxicity (esp. medical nexus for mefloquine use and psychiatric symptoms)
- Is mefloquine use documented in veterans’ service records?
- Other evidence for VA claims for mefloquine toxicity
- Is there a VA diagnostic code for mefloquine toxicity/mefloquine poisoning?
- Analogous ratings for mefloquine toxicity
- Is there ongoing research on mefloquine toxicity?
- Next steps for veterans who think they might be suffering from mefloquine toxicity
- Final Thoughts from Dr. Remington Nevin
Emma: Good afternoon and welcome to Facebook Live with Chisholm Chisholm & Kilpatrick. I’m Emma Peterson, an attorney here at the firm. And with me is Courtney Ross, also an attorney and CCK. And we are both very excited to welcome guest to CCK’s Facebook Live, Dr. Remington Nevin. He is here today to talk to us about an exciting topic, mefloquine toxicity. So, we are going to be jumping right in just to get as much time as we can in with Dr. Nevin. If you do have questions– and we hope that you do– throughout this broadcast, please feel free to post them in the comments section. We will do all that we can to address them as they come in. But we do think this might be a really interesting topic. So, if we don’t get back to you right away, we will try to answer your question either at the end of the day or tomorrow. So, with that, let’s just dive right in. Dr. Nevin, what’s mefloquine?
Dr. Nevin: Yeah. Thanks so much. And welcome everyone. Mefloquine is an anti malarial drug. It was originally sold under the brand name, Lariam. And it’s been commonly given to U.S. service members on overseas deployments. It’s a once a week, white, round, roughly smaller than dime sized or a fingernail sized tablet and it’s given weekly to troops overseas as part of command efforts to prevent malaria. Malaria, as we know, is a common problem in tropical areas where the U.S. military operates. And for many years, mefloquine was the military’s preferred anti malarial.
Emma: Okay. And so, let’s just back up a little bit. And I probably should start with this.
How did you get into studying mefloquine, the effects of mefloquine? What is your background in this area?
Dr. Nevin: Right. So, I’m a former U.S. military public health, preventive medicine physician. I was trained at the U.S. military’s medical school. I have training in occupational medicine, drug safety, epidemiology and public health. And it was on a deployment with the 82nd Airborne Division, I was their public health officer. I was on a deployment to Afghanistan during the surge in 2007, that I became aware of systematic problems with the military’s use of this drug. Like many military physicians at the time, I wasn’t very familiar with the drug’s inherent dangers that were much more familiar with those now. But at that time in 2007, I knew that the drugs should not be used among service members with mental health contraindications. Things like depression, anxiety, folks taking anti-depressants, for example. And at the time that I deployed, I knew that these problems were rising in prevalence in the U.S. military. And I saw problems with the use of the drug, such that this drug was being prescribed to these service members. And that’s what began what’s now and over decades long interest in this in this area.
Dr. Nevin: Yeah.
Courtney: Could you talk a little bit about how long the U.S. military has been using mefloquine? And if there’s specific conflicts that we know it was used in?
Dr. Nevin: So, mefloquine was licensed by the Food and Drug Administration here in the United States in 1989. So, it’s been 30 years that the drug has been available. But the U.S. military only began using it on a large scale with the operations in Somalia, 1992, ’93, ’94. Before then, it had been used. And there are some reports of isolated use in the 1980’s and possibly even in the late 1970’s. So, it is possible some veterans were exposed before it was licensed. But for the most part, the bulk of the use of this drug was beginning with operations in Somalia. And that means it was not used during the Gulf War conflict. For the most part. There’s always exceptions. But really, it was the Somalia conflict used by special operations and on small scale missions around the world in the 1990’s. And then the next large scale use of the drug began, of course, with operations in Afghanistan in 2001, where it was a preferred drug for for many years. When we began operations in Iraq in 2003, mefloquine was also the drug of choice at least for the initial part of that conflict. Use declined significantly beginning in around 2004 in Iraq. But isolated reports of use in Iraq continued for many years. And it was widely used in Afghanistan until beginning in around 2009, when the U.S. Army first among the services, implemented policy moving away from mefloquine back to a daily drug, doxycycline, which interestingly enough was the drug of choice back in 1989 before mefloquine was made available. So, that’s very interesting. And then use all but stopped in the U.S. military in 2013 around the time that the FDA added a boxed warning or black box to the drug’s label.
Emma: Okay. So, what types of symptoms are service members and veterans that took mefloquine? What did they experience when they took the drug? What do they experience continuing going forward? What really was the impetus behind that black box warning?
Dr. Nevin: Right. So, ever since the drug was first licensed here in the United States, the product label has warned of fairly significant and severe and even serious adverse effects. We’ve known all along that mefloquine can cause symptoms such as nightmares, insomnia, abnormal dreams, anxiety, depression, panic, paranoia cognitive, changes changes in personality. Really any psychiatric symptom that one can imagine has been reported with mefloquine use. Mefloquine can also cause a number of neurological symptoms. Things like tinnitus or ringing in the ears, subjective hearing impairment, paresthesias or tingling in the hands and feet, disequilibrium, dizziness and vertigo, a sense of imbalance on one’s feet. And we think even more complex problems. Things like complex sleep disturbances, including sleep apnea and possibly even some neuroendocrine disorders and gastrointestinal disorders. All of these symptoms and signs can be plausibly linked to the drug’s inherent neurotoxicity.
Courtney: And when a veteran takes the mefloquine, what’s the time period for how quickly, if they do experience some [inaudible] start to experience at after injecting the drug?
Dr. Nevin: Yeah. That’s an excellent question and it raises the concept of what I’ve termed, symptomatic exposure. We’ve all heard of veterans and officers and others who say, “I took mefloquine and I was fine. I didn’t have any symptoms.” Fantastic. That’s great. And thank goodness that you didn’t because you really wouldn’t wish some of the symptoms on your worst enemy. The nightmares in particular. What we find though is that a sizable minority and the precise percentage really awaits further determination, but it’s sizable. It’s at least 10 percent. It’s very likely a third of users experience symptoms, prodromal symptoms, symptoms that predict these more serious events. Typically, within the first few doses, the manufacturer, early on during use of the drug, even acknowledged that these prodromal symptoms typically manifest within the first one, two, three or four doses. Which means, typically, within the first month or so of use of mefloquine, if you are susceptible to these effects, you’ll experience one or more of these symptoms. And if the drug is being used correctly, those symptoms should lead to the drug’s immediate discontinuation. But unfortunately, far more often than not, what we find in the military is that veterans were often ordered to continue taking the drug despite experiencing these symptoms, that even the manufacturer says, requires the drug’s immediate discontinuation.
Emma: And how long do these symptoms last? If you stop taking mefloquine, do these symptoms go away? Is it a lifelong problem? What should folks be thinking about.
Dr. Nevin: So, hopefully, if you recognize that you have this personal intolerance to mefloquine and that for whatever reason you are susceptible to these effects, hopefully, if you’ve discontinued the drug as soon as possible– let’s say, you take one tablet, you have terrible nightmares. Hopefully, you’ve stopped then taking the drug and you don’t take that second weekly tablet. You go to your doctor and you say, “I need a safer daily drug, doxycycline.” Of course, that didn’t happen in most cases. Unfortunately, even the drug’s manufacturer says these prodromal symptoms could be prodromal to what they say is a more serious event. Well, what could be more serious than anxiety, depression, restlessness or confusion? These are all very serious. I think that turned more serious event is actually a euphemism for the permanent disability, the permanent long lasting effects that we should have known all along could be caused by this drug. Now, what percentage of folks actually experience chronic effects from mefloquine? Unfortunately, we don’t know. We don’t know. But there is some suggestive evidence that indicates that this problem is much worse than we had thought. So, for example, a recent study out of the Scandinavian countries examined folks that reported acute or what they thought were short term effects from mefloquine use, symptoms such as nightmares. And what this study found was that on contacting these folks several years later, over 20 percent who had reported nightmares with use of mefloquine were still reporting these symptoms three years or more after use, of those reporting cognitive impairment, concentration problems, memory problems. Something like 30 percent or more were still experiencing these symptoms over three years after use. So, a not insignificant percentage of folks who experienced these short term symptoms. What we thought were short term symptoms. These symptoms may persist in a sizable minority become chronic and contribute to permanent disability.
Courtney: So, Dr. Nevin, you alluded to this a little bit before about when the Army, and the Navy, the Marines stopped using mefloquine and some of that corresponded with when the FDA put the black box warning on the box. Does any branch of the U.S. military still prescribe mefloquine today?
Dr. Nevin: So, hopefully not. I maintain some contact with folks inside the military who have influence in this area. And my understanding based on a review of recent data is that new prescriptions for mefloquine account for far less than one half of one percent of all new anti malarial prescriptions in the U.S. military. And I’m told that if one tried to order mefloquine today as a prescriber in the U.S. military will be very difficult. They’d have to run through all sorts of hoops and fill out authorization forms and so on. So, I think as a practical matter, I think most new exposure to mefloquine in the military has stopped. And that’s excellent. And I think that trend began in earnest in 2013 with the U.S. military policy change that declared mefloquine a drug of last resort. But that being said, for the better part of the last quarter century, mefloquine was often viewed as the first line drug or the drug of choice. And so, who knows how many tens of thousands or even hundreds of thousands of veterans have had some type of symptomatic exposure to the drug. Meaning they took the drug and also experienced these prolonged symptoms corresponding to a period of being ordered to use the drug for a long period of time.
Emma: So, I think now we’ll shift into I think what most people want to know. Can you get benefits, disability benefits for mefloquine toxicity. And we have a number of Facebook Lives and blog posts about how you get service connection. So, as a review, everyone knows being in service event, in your current disability. And then, of course, I think the most important factor for these types of cases it’s going to be nexus. So, can we get nexus in these mefloquine toxicity cases?
Dr. Nevin: Absolutely. And why wouldn’t we be able to demonstrate this? No less an authority than the Food and Drug Administration has made clear. This drug can cause permanent symptoms, permanent adverse effects. Things like dizziness, disequilibrium. And, of course, these symptoms can contribute to significant disabilities. Psychiatric symptoms that last years after use can similarly be disabling. So, it shouldn’t come as any surprise that there are a number of veterans who are experiencing these long lasting or even permanent symptoms that are contributing in some significant way to disability. And, in fact, the V.A. has awarded several disability claims to veterans who over the years have filed for benefits and who had supporting medical documentation, an opinion from a physician, who opines based on their review of the pertinent facts that in their opinion it’s more likely than not that these lasting symptoms are due not to some purely psychiatric condition, not due to, for example, a concussive event or a trauma. But due to the effects of the drug. And in many of these cases, it’s quite obvious. It’s very obvious that they suffered a short term, adverse reaction to the drug. And in fact, if followed carefully in subsequent years, it was shown that these symptoms persisted. They never, in fact, went away. That what we had hoped were simply short term symptoms persisted and then contributed to permanent disability. The earliest case I’m aware of that resulted in an award of this permanent disability was from the early 2000’s. It was from the start of the Iraq conflict. And I’ve been involved in dozens and dozens of claims in recent years that are making their way through the V.A. disability process. And, of course, these dozens of cases are easily the tip of a very, very large iceberg.
Emma: So, I think the takeaway is that, just to be clear, this is not a presumption that V.A. has. It’s not something that they have conceded causes these things like herbicide exposure or Camp Lejeune water contamination. So, it is something that you are getting me to go out and get an opinion on. But it’s good to know that sounds like the science is there and there are people out there that are willing to assist with developing their claim.
Courtney: Yeah. And so, as Emma mentioned, one of the other things that you need to show to get service connection for disability is the in-service incurrence which here would be taking the mefloquine while you’re in service. Is it often documented or is there somewhere in the record that veterans can look for to show that they they took mefloquine as part of their service?
Dr. Nevin: Yeah. And this is really for the V.A. This is the unfortunate thing is that as all veterans know, who’ve been exposed to mefloquine, who’ve taken mefloquine. This drug has been very poorly documented in service treatment records. And in fact, no less an authority than the military’s top physician, Dr. Woodson in 2012 wrote a memorandum where he clearly stated, he clearly conceded that some deploying service members have been issued mefloquine or prescribed mefloquine without documentation in their service treatment records. And unfortunately, we’ll need to do some sort of study to determine just how common this problem is. But in my experience, over half the cases involve reliable use of mefloquine, where we’re almost certain that the veteran took mefloquine. It really can’t be any other drug based on all of the other facts. But it’s simply not documented in the military medical records. And this isn’t surprising because mefloquine, unlike a drug, that you would get prescribed at a doctor’s visit for your particular individual problem. Mefloquine has been viewed by the military as an item of equipment, as an item of issue. You’re really not prescribed mefloquine in the military. You’re issued it. Like you’re issued your ammo or your gun. And for example, when I deployed to Afghanistan with the 82nd Airborne in 2007, I was told on my way to board the plane, I was told to reach into a garbage bag and pick out a box of mefloquine. And it ends up, fortunately, everyone on our roster had been prescribed the drug. And so, we had a prescription record of mefloquine in our medical records. But if someone else had shown up at the last minute to my unit and had joined that line, they would have reached into that bag, grabbed a box of mefloquine with someone else’s name on it and they wouldn’t have been on that roster. And so, they would have been exposed to mefloquine with no proof in their military, medical records, as it was I had a box with someone else’s name on it. And someone else had my box. And this is not at all uncommon. And you’ll hear stories from veterans about being issued the drug information or being just given a baggie and told nothing about the drug. Just to take one once a week. So, the quality of documentation of mefloquine has been conceded by beauty to be poor and this is substantiated by so much reliable veteran testimony and even what the military itself concedes. So, in many cases, establishing exposure to mefloquine must be done through other means. So, for example, there are certain deployments where the use of mefloquine is first line drug. This is widely known. So, for example, the early months of the Iraq deployment in 2003. Mefloquine was the frontline drug. One should be assumed to have taken mefloquine unless there is a reason to presume otherwise. Certain defined deployments. Everyone in the unit got the same drug. And so, if you can establish that other people in the unit took that drug, you can infer that you yourself took it and this can be established through at least statements and so on. And there are regions of the world where really the use of mefloquine would be assumed. Like, for example, sub-Saharan, Africa, Liberia, very malarias area. The military for years that said this is a perfect place to use mefloquine. And this is our preferred drug in this environment. So, if a soldier deployed there any time after mefloquine’s availability, 1989, it’s not unreasonable to assume they were exposed to mefloquine.
Courtney: Yeah. And I think a key take away there is that if a veteran– if it’s not documented in the veteran’s record that late testimony might be a key piece of evidence that you don’t have to develop for your case and kind of explaining where you were deployed to and that you were given an anti malarial drug that you had to take once a week, possibly describing what the drug looked like that you took, so that we can establish that in service [inaudible].
Dr. Nevin: Yeah. And it’s actually not that complicated. If you assume veterans testimony as reliable as the V.A. generally has to do, if a veteran reports a reliable history of taking a white, round, roughly smaller than a dime sized, fingernail sized tablet once a week, if it came in a box labeled Lariam or mefloquine, that’s good evidence that it was mefloquine. But if they took a weekly anti malarial drug and they were deployed to areas of known resistance to the other weekly drug, chloroquine, then you can safely rule out chloroquine as the drug. So, if someone reports weekly use of an anti malarial, obviously, it could be chloroquine or mefloquine. But most deployments over the last quarter century have been to areas with chloroquine resistance, Africa, for example. Afghanistan. So, they wouldn’t have been given chloroquine, you can assume that weekly drug equals mefloquine in those cases.
Emma: So, sounds like some other evidence you could use would be just some independent research on your area of deployment and also getting those lay statements and describing the conditions in which you took the pill by use statements from people in your unit, all super helpful evidence to show that in-service incurrence. Any other types of evidence that you think might be helpful for people listening out there and submitting these claims besides lay statements. Obviously, getting a medical nexus letter. Any other types of evidence that you think would be helpful people should know about?
Dr. Nevin: I’m contacted frequently by veterans and, of course, in order for me to opine on whether a veteran has mefloquine poisoning, I first need to establish with reasonable certainty that they have been exposed to mefloquine. So, this is always the first step in my working up a client. And I was surprised at first at how many veterans had actually kept their pill, pack or their bottle or their little baggie with their mefloquine. So, in many cases, a veteran actually has this medication in their possession. And in my experience, that has been acceptable evidence to the V.A.. Even though they may not have a prescription record for mefloquine, even though there may not be a doctor’s note prescribing mefloquine, often if you look through your service treatment records, there may be a scribbled note under current medications that one is taking Metflor, MQ or Lariam, so, that’s good evidence that you were taking mefloquine on deployment. And then, especially in later years, the Post Deployment Health assessments had actually inquired about use of anti malarial and in some cases, that form itself documents that the veteran reported, self reported a history of mefloquine. You see, there are many opportunities besides a prescription to establish reasonable evidence of exposure to this drug. And in the end, worst case scenario, when there’s none of this, if the veteran recalls that they took this drug, Lariam, mefloquine can describe its’ shape, appearance, how it was packaged. Typically it was made available in blister packs. And so, the veterans will have to– will remember peeling it out of this opaque blister pack on a weekly basis. Well, we know they’re deployed to a malarias area. They’re reporting weekly use of a drug that’s consistent in appearance with mefloquine. So, resolving uncertainty in the veterans favor, that’s mefloquine. And if the V.A. and D.O.D. have a problem with trusting veterans on reporting what drug they use, they should have taken better care to document what drugs they were giving to soldiers and they didn’t. And so, this is what results– as a result.
Emma: So, since there’s, obviously, no presumption from mefloquine exposure, does and V.A.– as far as you know, in your experience walking these cases, does V.A. have a diagnostic code for mefloquine toxicity or do we have to kind of pull things together to make that happen?
Dr. Nevin: Yeah. And that’s an excellent question because we’re sort of at the stage with mefloquine poisoning that we were with PTSD in the 1970’s. Many veterans today are surprised to learn there was no diagnosis of post-traumatic stress disorder during the Vietnam years. There’s only the efforts of Vietnam veterans that led the psychiatric community to recognize and define diagnostic criteria for a new disease which they called post-traumatic stress disorder. And I think we’re at that state, we’re in that position with mefloquine poisoning. I view these signs and symptoms, all the psychiatric symptoms, all of the neurological signs and symptoms associated with mefloquine use– I don’t view those as side effects. I view those as symptoms of a disease, a disease caused by poisoning of the brain by mefloquine and related quinoline drugs. Our group, we have a nonprofit called the Quinism Foundation. We call this disease Quinism or Quinism. And we hope in due course, this disease will be recognized, that it will be easily diagnosed, that there’ll be diagnostic criteria for it. There’ll be a diagnostic code. There’ll be a [inaudible] term for this condition. But we’re not there yet. We’re not there yet. We can talk about mefloquine poisoning because mefloquine poisoning does cause various problems. But for the moment, what we’re left with is mefloquine poisoning being conceded by the V.A. in some cases as causing certain psychiatric disorders and certain neurological disorders. So, of the claims that have been awarded thus far, the veteran proposes that their anxiety disorder is a residual or has been caused by their mefloquine exposure. And so, they meet diagnostic criteria for anxiety disorder unspecified. And their physician or myself or another expert opines that the cause of this anxiety disorder was their use of mefloquine. So, you establish a diagnosis, you establish disability or degree of disability and you establish a nexus to military service, thus meeting V.A. criteria. And there have been several of these claims awarded. So, it’s not mefloquine poisoning that they’re claiming. The mefloquine poisoning or the mefloquine exposure provides the nexus to military service. So, veterans shouldn’t claim mefloquine poisoning. And it’s tempting for the veteran, too. I recognize that. But what the veteran has to do is identify those actual diagnoses that exist today in the medical textbooks and the link those to mefloquine use pretty much any psychiatric disorder. In my review of this issue over the 25 years of this drug has been plus years of this drug’s been available, the symptoms of mefloquine poisoning have mimicked virtually every psychiatric disorder. So, if a veteran’s been diagnosed with, for example, bipolar disorder and they took mefloquine and the symptoms began in the aftermath of use of mefloquine, it’s possible that bipolar disorder diagnosis as a result of symptoms of mefloquine poisoning. So, these psychiatric conditions may be caused by mefloquine poisoning and then neurological conditions. Vertigo, disequilibrium, dizziness. These may have contributed to things like diagnoses for benign positional vertigo, Meniere’s disease. It’s diagnosed as that by clinicians that don’t recognize the role of mefloquine. And in my experience, the V.A. has awarded compensation for conditions like that, which the veteran has been able to argue or actually do to mefloquine.
Emma: And I think that V.A.’s used to doing this, right Courtney?
Emma: They’ll rate things by analogy or they’ll rate your residuals, the mefloquine, the in-service injury or an event, residual disabilities, neurological effects, psychiatric effects can be rated separately. And so, you certainly want to talk to your veterans service officer or their colleagues at DAV and a credit representative. Whoever you are working with on your claim, talk to your friends, think about how to frame this. But like Dr. Nevin said, you don’t want to claim that you want sort of connection for mefloquine poisoning or mefloquine toxicity. VA’s probably not going to [inaudible] for them to give you a benefit for that. You need to couch it in their terms, phrase it in terms of these are my residual disabilities from that mefloquine toxicity.
Courtney: Yeah. And since there is no diagnostic code for mefloquine toxicity in your experience in the cases you’ve seen where conditions get granted, do they rate psychiatric conditions under the diagnostic criteria for mental health disorders?
Dr. Nevin: I’m familiar with a few handfuls of cases of successful psychiatric claims. A very common condition that is awarded is anxiety disorder, anxiety disorder unspecified or depressive disorder unspecified. But, of course, the V.A. only awards one mental health diagnosis. And in many cases, anxiety alone or depression alone is not sufficient to account for the range of symptoms that the veteran is experiencing. So, for example, a veteran may return home from a mefloquine deployment and have anxiety as a predominant feature. But they may also be suffering through the effects of occasional hallucinations, paranoia, delusions. They may have cognitive impairment. And all of these additional psychiatric symptoms can contribute to the psychiatric rating percentage. And so, you’ll get these very unusual situations that medically don’t make any sense where someone is diagnosed with depression. But then awarded a very high percentage as a result of all of these other symptoms that really only makes sense in the context of mefloquine poisoning. So, I think what that speaks to is that in due course, the V.A. is going to have to recognize that trying to hammer this round peg into a square hole, doesn’t make sense. It doesn’t make sense that really the underlying diagnosis is mefloquine poisoning. And perhaps one day we’ll see the V.A. develop a DBQ and conduct CNP examinations assessing for all of the symptoms that we know are caused by mefloquine and then permit a reasonable rating percentage with an appropriate diagnosis a.k.a. mefloquine poisoning. But, of course, we’re not there yet and judging by how long it takes for other conditions to be recognized by the V.A., it’ll probably be several years before we get there. So, don’t hold your breath.
But we will get there.
Courtney: To that point though, is there ongoing research on that’s related to the effects of this drug on service members?
Dr. Nevin: So, in the V.A.’s defense, and I recognize there are very heroic people within the V.A. and DOD bureaucracies, who know how bad this problem is and who have wanted to speak up and speak publicly about this for many, many years and have been wisely not doing so because it would be disadvantageous to their careers. But there are many, many people within these organizations that know this is a problem. Recently, we’ve seen several very heroic individuals within these organizations work hard to advance favorable policies. We saw the military, for example, acknowledge that this drug has not been wisely used, hasn’t been well documented. We got that memorandum on record. We saw the military move away from the drug. On the V.A. side, many years ago, we had some good documents come out acknowledging the long term health problems of mefloquine, encouraging people to look into this. More recently, the V.A. has funded a study by the National Academies of Sciences, Engineering and Medicine to look into published evidence of chronic effects of mefloquine. I’ve spoken to this group many times. They’re a good group of people. But as I told them, this study is unfortunate. It’s flawed from the start because what they’re doing is reviewing the published literature on mefloquine. And there just hasn’t been any published research into these chronic effects. So, not surprisingly, if they just limit their research to what’s been published, they’re not going to find much. Our group has been telling this committee at the National Academies. They have to listen to veterans. They have to do what the drug regulators did and actually review the individual medical records and drug adverse event reports that have been filed by a veteran. They have to listen to their stories. And if they do that, I’m confident that the National Academies through their research will conclude as drug regulators have, that this drug does indeed cause many significant severe chronic effects. So, we’ll see what comes from the National Academies’ study. I’m cautiously optimistic that they will conclude that at least everything our group has been saying and that everything veterans have been saying is plausible and requires further research and not slam the door on claims of this nature. But we’ll see. We’ll see in about a year when this study is released.
Emma: So, if a veteran thinks they might be suffering from the effects of mefloquine during their time in service, what should they do next? Is there a treatment? Is there something they need to go tell their doctor? What should the next steps be?
Dr. Nevin: So, my experience is that many veterans who are suffering from mefloquine poisoning have known all along that mefloquine was the cause of their problems. They were perfectly healthy. They took this pill and then within a few weeks, they or their family members or their unit members notice all sorts of very significant changes. And these changes, in many cases, are not plausibly explained by things like combat or exposure to concussive events. In some cases, the nightmares and anxiety and insomnia start at home even before they have deployed. And the nightmares had nothing to do with combat. Their nightmares of monsters and horrific things like that. And so, the veteran knows. Veterans know when they’ve been poisoned. People know when they’ve been poisoned. And the veteran knows. But unfortunately, for many years, many of these veterans were told, it can’t be mefloquine. And so, instead they’ve adopted other explanations for their symptoms. In some cases, they’ve been told incorrectly they have PTSD. Some will have PTSD. But some have instead adopted PTSD as an explanation for their symptoms or traumatic brain injury. But not all of their symptoms have been fully explained by what they’ve been diagnosed with. So, really, I would say the first step is to take a step back and think what symptoms do you believe are attributed to your use of the drug? And have you had all of those symptoms worked up fully? So, for example, there are many veterans that come to me, who have been suffering from symptoms that have been attributed to post-traumatic stress disorder. And they have a PTSD rating and they’re reasonably happy with that. But they’ve struggled for years with dizziness and vertigo and subjective hearing impairment and tinnitus. And all of these symptoms together could qualify, for example, for many years of rating, which is 60 percent in some cases. But they haven’t pursued formal diagnosis or work up for these symptoms because when they did initially look into it, they were told it’s nothing. But if they actually seek medical care to pursue a diagnosis, what they may find in this particular example is evidence of a central or brain stem cause for their vertigo, dizziness, disequilibrium, tinnitus, subjective hearing impairment. There may actually be objective evidence available on examination, that they have another disability that could be rated. And so, I would encourage veterans to first ensure that all of their complaints are thoroughly worked up, thoroughly worked up.
Emma: So, it sounds like you need to take a step back, personally assess what’s going on. If there are symptoms or conditions that you feel haven’t been addressed fully, talk to your doctor. Have an honest conversation. Explain, “This doesn’t make sense to me.” Ask for answers. Bring this up. Say, “Hey, listen. I was prescribed mefloquine. What do you think about that? What should we do next?”
Dr. Nevin: “Could this be mefloquine?”
Emma: Right. So, it sounds you need to definitely be an advocate for yourself and fully make sure that all the symptoms you’re experiencing are somehow explained.
Dr. Nevin: Yeah. And so, for example, if they have received a PTSD diagnosis, but they do have additional symptoms. Psychosis symptoms, for example. Significant paranoia, hallucinations, cognitive impairment. And those symptoms haven’t been fully accounted for by their existing diagnoses. And I would encourage them to seek further evaluation for that. Because, of course, the first step in any claim is to show that you actually have a disabling diagnosis. And in many cases, veterans have just kept a lot of symptoms inside and they haven’t reported it.
Emma: All right. Well, do you have any final thoughts for us that you want to share with our viewers with Facebook Live about mefloquine poisoning? Things they should be on the lookout for, things you want them to know about this issue?
Dr. Nevin: Well, I would say in the ten or twelve years that I’ve been looking into this issue, I– every year, I’m amazed at how many more veterans are out there, who’ve been affected by this. I’m concerned that in the final analysis, when we finally done our tally of how big a problem this is. That even I’ll be surprised by how bad this is. It could very well be single digit percentages or more of folks that have been exposed to mefloquine that are suffering some degree of permanent disability as a result of their use of this drug. Single digit percentages. All of the evidence I’ve looked at so far, supports this. And there are tens of thousands, if not hundreds of thousands of veterans who have been exposed to this drug. So, if you think you’ve been harmed by mefloquine, the numbers speak for themselves. It’s entirely possible that you have been. So, I would encourage you to look into this more. Learn about mefloquine. Learn about the symptoms that are caused by mefloquine. Get online. Learn from other veterans who have struggled with this condition and see if this helps to make sense of your condition. And then if it does, if it makes sense to you, then trust yourself. You know better than anyone, if you’ve been poisoned. People know when they’ve been poisoned. Take that information and go to your doctor and see if they can help work this condition up and you’d be surprised. Many doctors now are aware of this condition. They’re well read on it. And even without my help or another experts help, many doctors out there will be confident and able to say, “Yes. You have mefloquine poisoning.”
Emma: Well, I want to thank you so much for joining us here. And thank you for coming into CCK and joining us for our Facebook Live.
Dr. Nevin: My pleasure.
Emma: It’s been a really informative and definitely an interesting topic. And we want to say thanks to all of you for tuning in. And we’ll see you next time.
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