Sanctuary Trauma and Lariam Toxicity

Illustration: Lost on the Sea of Medicine, © 2014 created by Billiam James

This is the first of 4 posts on the idea of Sanctuary Trauma. 

Some weeks ago, Trixie Foster got in touch. Trixie is an extraordinary campaigner on behalf of those injured by Lariam (mefloquine) – see the Strange History and Lariam Hell. She also takes up the cause of those injured by other quinolones, like the Fluoroquinolones (See Flox-Tox, Flox and Tox Get Together). Not forgetting Pfizer’s trovafloxacin, one of the most toxic of the lot, which features in between the lines in Eric Rubin Boston Strangler – see if you can spot where.

Trixie’s email let me and others know about a talk The Lived Experience of Lariam Toxicity by Dave Rimmington. Given how busy I’ve been it was lucky I clicked on the video link. The talk was compelling. It’s a must listen to. Dave has also transcribed it and this features below.

Introduction to Lariam

Most people to come speak at these events are here…… because they’ve been successful. I’m here, because I haven’t!

For the 20 plus years despite my best efforts for surviving the most horrendous adverse symptoms of mefloquine toxicity, it’s not only just trashed me, but my family, and also the wider veteran community.

I failed! And I need your help! Which is why I’ve agreed to speak today.

You know, one of the challenges when I was offered to speak at this event was to deliver 20 years of Lariam toxicity in just 20 minutes. It’s completely impossible! It’s almost a half a lifetime of suffering!  So, whilst this is going to be a whistle-stop tour into Lariam toxicity, or chronic quinoline encephalopathy, or ‘Quinism,’ I really need this to be about YOU, YOUR awareness, YOUR clients, or family’s awareness, and how YOU can make a difference to the veteran cohort.

My experience with the drug first took place during a rapid deployment to Sierra Leone, with 1- PARA battle group in May 2000 on OP PALLISER. I didn’t even know where Sierra Leone was. Once we’d gone to the queue to get an issue of ammo, our jungle boots, jungle hats, we had an ‘Int’ [Intelligence] brief.  I’d no idea what was happening, and I certainly had no idea about the wider threat of tropical diseases.

After five days of being in theatre I soon got a good idea of the tropical threats! One day, eight days later, I was just finished guard and I walked across the compound, and was tossed a couple of packets of Lariam by a couple of blokes. My mates were putting away their anti-malarial drugs into their kit.  I asked “How many of these do you take, guys?” “Yeah, one tablet every week Dave!”

I was a bit sceptical! I’d never heard of a one tablet a week. But to be fair, I’d have pretty much done anything to stop being eaten alive by then. So, I took my tablet pretty much straightaway.  After the first dose, within hours, I wasn’t feeling quite right!

I was feeling nauseous, I’d lost my appetite! I could remember at the evening brief, whilst getting a set of orders from A1 Echelon, I was feeling dizzy when I sat down, I can remember writing the notes and losing focus, and having blurred vision, whilst I was trying to write.  That came and went throughout the tour. I wasn’t gonna say anything because, we’re on an operational tour, and we’re meant to be ‘roughty-toughty’ soldiers. Just crack on! But, certainly that night I didn’t sleep and in fact, I hardly slept for the whole duration of the tour.

I thought, you know what, maybe if I can just take on more water and maybe get rid of this dehydration, I’d be in a better place.

Little did I know that within days the symptoms were going to get much, much, worse. I was feeling paranoid. I felt every African person passing me was a threat or an enemy.

I had really unusual thoughts, aggressive thoughts about brutal killings, which were completely out of the norm. Depressed mood was kicking in and the feeling that I shouldn’t have been there, I didn’t need to be there. I remember one time actually in terms of hallucinations. There were two small African children, one of them carrying an AK 47. And as I was going over to the UN compound, they disappeared into the bush.

In terms of vivid dreams, I can remember , during the night you could hear everybody else like screaming in the middle of the night. In fact, one night, a lad from 1PARA woke up from a mefloquine dream and shot himself in a forearm. I’m not quite sure how you do that, but yeah. He wasn’t the only one. My mate Phil, next to me, woke up screaming that he was being pinned down by a big spider.

My dreams weren’t as funky as that. I was just talking to my deceased granddad about his two dogs, ‘Squibs’ and ‘Piddles.’ In the morning, it was so lifelike and real, I was looking over compound wall looking for him, it was so vivid. If only I’d been made aware of the ‘Blackbox warning’, or been briefed, or had a risk assessment, in line with MOD [Ministry of Defence] policy.

Because ultimately, the continued use of mefloquine in the presence of these prodromal symptoms, these symptoms I was experiencing, not only risks further intoxication, but adds to a more serious event. The drug should have been discontinued. I never knew that. Nobody else knew that. In fact, it was a bit of a laughing joke that having these funky dreams is all part and parcel of the Lariam dreams.

Sanctuary Trauma

After about a month in Africa, I got back to Colchester, and  reported immediately to the medical reception centre. I wasn’t in a good place. I was dripping with sweat. I thought I’d caught some tropical disease, the way I was feeling.

I got tested straightaway. It came back as negative. Oddly enough, I had to keep taking the Lariam throughout. We were told “oh, yeah, just finish off the rest of the Lariam, when you get back as well, that way you’ll be well protected”

But my family started to notice the change; and the mood swings; and how I’d become a completely different person. One night I threw myself out of bed from the vivid dreams that I was having.

Knowing that I could risk my full career by going to the doctor, as I’d seen with all the soldiers when they talked about mental health – I’ve seen their careers stopped, binned, ruined, I was really anxious about that. But I took courage, and went to see an Army doctor.

One of the difficulties was that I’d never experienced mental health before. I didn’t know what words to use. There was no mental health in my family or anything like that. So I was stumbling trying to explain the symptoms, to explain my experience or what I’ve been feeling what I’ve been going through. But literally within a split second, the doctor shut me down straightaway. “Look! You don’t have PTSD! You didn’t see any action! Stop wasting my time!”

I couldn’t believe what he had done. He destroyed me. And petrified that my chain of command was going to find this out, that my career was going to be over, there was no way I was ever going to talk about this, ever again, and certainly not ever go and get help.

The only thing I could do to survive was to suppress my symptoms, push them away, mask my emotions, and put on a face – smile on the outside dying on the inside. I became a workaholic, not only to avoid my family where I’d become a completely horrible monster –  but to keep me distracted.

One of the benefits of being away, or being a workaholic, as I was working in a training environment, I was able to release some aggression. But the symptoms were persistent, and immensely tiring! Trying to fight the symptoms of depression, putting on an act, was horrendous. And the fact I couldn’t release all my aggression made me so tired. I’d become a completely different person and it started turning inwards.

Suicidal ideation was really kicking in. I really wasn’t in a good place! After four years, suppressing the symptoms … it really was just too much… and in a split second… I hanged myself.

That really hurt me! My 8-year-old son found me. I was blue and lifeless, and there was  blood pouring from the back of my head. A few days later, I was woken up in Colchester ICU in a most horrendous state. This was just the next chapter in Lariam toxicity.

There’s Nowt so Blind as a Doctor

I talked about ‘Sanctuary Trauma’ earlier. That initial doctor’s appointment was so important. He could have saved a life, and saved other people’s lives, if he had taken the time to understand Lariam. It wasn’t a new phenomenon! You know, Lariam toxicity, and the adverse effects have been around since 1989. Even the World Health Organisation, you know, slammed it when it was first marketed.

The point is that when you go in to see the doctor, you expect to get help and support, but instead, you get this invalidation, gaslighting or rejection, that pushes you further, and further, into this trauma – like myself, just squirrelling it all away. This has got to stop!

What, in terms of Sanctuary trauma, have I gone through? The list is endless, to be fair, you know, when you’re in that crisis moment, I’d left the army and I was thinking about taking my life again, I was in a poor state. I approached ‘combat stress’ [a military mental health charity] and was in desperate need. But they didn’t screen for or acknowledge Lariam toxicity.

If I see my GP, I will be told that “Well!” you know, “it’s got a long half-life, but Lariam will be out your system by now!” I fully understand that. But this is a neurotoxic drug. Lariam passes through the blood brain barrier and causes persistent damage to the brain.

I’ve tried to engage with adult mental health services and the immediate diagnosis of convenience was, “Oh, your military? So, you’ve been diagnosed with PTSD?” “No! This is Larium toxicity!” And you know it was a case of….”What’s that?”

I tried to engage in with the Foundation Trust. I spoke to the strategic director, which was really great, and they were really interested, but then said “Thanks, Dave. But yeah, that’s really interesting, but if we concentrate on PTSD, it brings us in more funding!” That wasn’t the answer I wanted to hear!

When the Clinical Commissioning Group ran a series of training sessions, on ‘hearing hidden voices in mental health and wellbeing,’ I was rejected. They said “We’ve already got people talking about veteran issues!”

I’ve been misdiagnosed by psychiatrists as depressive disorder.

When I went to see the tropical medicine and infectious diseases place, they agreed that the symptoms were consistent with Lariam toxicity, but he said he wasn’t a psychiatrist, and so couldn’t actually make the diagnosis!?!

Similarly, consistent cognitive assessments by the neuropsychologist also couldn’t diagnose Lariam toxicity, based on a lack of research, and matched controls. So, I was left in limbo yet again!

I thought, maybe the MOD would be able to help with Veterans UK? With a name like that, you would expect them to ‘square you way’ [help you]. But the Secretary of State, rejected my war pensions claim.

My War Pension Claim went to tribunal, and totally by surprise, and to such relief, the whole panel agreed, unanimously, that my symptoms were down to Lariam toxicity! The panel consists of a military member, a judge, and a senior doctor. It just so happened that the military member was the former Colonel of the Parachute Regiment, Giles Orpen-Smellie. It turned out, that he was Second in Command of 1 PARA, on OP PALLISER! He categorically said that he fully understood that this was all down to Lariam toxicity, and he also had to deal with the aftereffects in his Battalion, in the Regiment, when he got back.

I thought I’d ‘flag this up’ [escalate] a little bit further and approached the Veteran Advisor to the Office of Veteran Affairs. But after chasing him for months on end, and being brushed aside I was told, “Well, this is only very, very rare, and only affects a small number of people!.” So still no help!

I approached General ‘The Lord’ Dannatt, as well. He’d had ‘lived experiences’ with his son, Bertie, which conflicted with what I’d been told by the Office of Veterans Affairs.  He believed there was actually a high number of cases!

There’s only one place I could take it further, by taking it to my own MP, who had no idea, and referred it back to Johnny Mercer MP, the member of the defence select committee, who got the drug labelled as “a drug of last resort!” Johnny didn’t really want to take it any further.

Where Next?

If you go to .Gov Website, there’s actually now ‘mefloquine information signposting for former service personnel’ but  the bottom line, after you read all the stuff, it says “Go back to your GP!” So now you see that we’re stuck in this ‘never ending washing machine of Sanctuary Trauma’ and there is no help, treatment or acknowledgement!

At the same time, none of the military service charities, or service leads, mention ‘Lariam’ or ‘Mefloquine’ on their website, and will not respond, or communicate about this type of neurotoxic brain injury.

Where do we go? I’ve lost count how many struggling veterans that have reached out to me online in fear of the never-ending Sanctuary trauma or were looking to take their own life! Only two weeks ago, I was chatting to a lad ex-3PARA who reached out to me, telling me that he was struggling, and it was going to take his own life! He was petrified about getting pushed back into this washing machine, and being misdiagnosed with PTSD, when clearly it was Lariam! This guy had never been on an Operational tour. In fact, his issue started when he went to Kenya and was given Lariam, and subsequently ‘piled in’ [deteriorated] on that!

The thing is, he’s not the only one! I’ve spoken to hundreds, if not thousands of people from around the world that have all experienced Lariam toxicity. And what’s important to note is that some of these people are civilians that have also been subjected to the drug!

So, neurotoxicity is not a new phenomenon! You know, it’s this type of Acquired Brain Injury [ABI] that causes physical damage to the brain, and brainstem! There are all sorts of examples: you got PANS and PANDAS; you’ve got antivirals and seizure in children, carbon monoxide poisoning. You know, even lead poisoning as well causes neurotoxic damage to the brain. Lead poisoning wasn’t really recognised until the 1980s. Even PTSD wasn’t recognised until the 1980s. Before then it was called Cowardice or Shell Shock.

Some of you guys might remember the tragic case of student, Alana Cutland. That took her own life jumping from a plane, flying over Madagascar. I’ve spoken with her father, after reports of her being on Lariam. This went cold in the inquiry but it still shows how the adverse effects of anti-malarial drugs can cause psychosis and suicide!

So why is there a problem? Well, it is biased research funding. More profitable research is not usually beneficial to the patient. Its biased reporting in medical journals and in the media. There’re commercial conflicts of interest. Awareness and education of clinicians that just don’t understand that Lariam can be a root cause. All they see is a sticky plaster, you’ve got symptoms, it’s PTSD! You know, an inability to diagnose Lariam and default to a diagnosis of convenience, PTSD! There’s no long term follow up on patients, certainly not during the trials and certainly not those who’ve presented symptoms. There’s no interest.

There’s a lack of medical records from those that have suffered and left the military. The MOD [Ministry of Defence] has a disregard for the authorities and Regulators.  A Defence Select Committee required the MOD to make Mefloquine ‘a drug of last resort’. this led the MOD to carry out a study that was meant to be published in 2016. But now, they blindly turn around to the MHRA [The Medicines and Healthcare products Regulatory Agency] and withhold it!  This study has been put on the shelf, and allowed to gather dust, despite annual chases by the Defence Select Committee to see the results. I wonder why?

You know, up until last night, there was 68 veteran suicides, that we know of. We now have 69! I know the lads from ‘The Rifles’ sustained heavy losses from suicide. But there’s a common denominator here that’s been consistently overlooked! And I’ve spoken to the group guys and confirmed that the majority of the guys were on Lariam, both in Kenya, prior to deployment to Afghanistan, and also in Afghanistan as well!

And it’s ironic that they’ve taken 26 losses just this year, and that’s has not been looked into? Veteran suicide continues to be ignored by the MOD and where information, has been passed on coroner’s inquests have not investigated it properly. I’m not going to name specific names now, or specific cases, but you might recognise a few names in there. But you can read about them in a forthcoming book called ‘If you Wake at Midnight’ ‘Lariam the wonder drug scandal.’ That should be released soon. These are true stories. I’d recommend getting it.

How can you help? We need screening. Did they take Lariam. Did they suffer adverse effects. When they’re presenting symptoms, do you need to be ‘on it!’

You need to be training researchers to distinguish the effects of Lariam toxicity from other disorders such as PTSD and TBI.

Clinical guidance is of key importance here. We need to be drafting this clinical guidance to give confidence to the clinician to make that diagnosis instead of pushing guys around, and around, this washing machine of never-ended Trauma.

Investigate the veteran’s MedDocs [Medical Documents] thoroughly. If you haven’t got any information, assume that they did take Lariam!  I can’t express how widely Lariam was taken from the mid 1990’s onwards – Kenya, Belize, Brunei, Afghan, Iraq. The guys have been on this drug, and it’s been completely overlooked!

Think neurology, not just mental health, but most importantly, listen!

If you believe your patients, you will save lives and avoid causing Sanctuary Trauma.

The Decapitation of Care from which these illustrations by Billiam James come traces the close links between developments in Western Medicine and Warfare. The first War in which more people died fighting than from disease was only in 1904 and since then keeping soldiers alive has been key to military success. This has meant the military have been at the centre of some of best things in medicine, and especially in surgery. 

The military have also pioneered gaslighting, the execution of troops who don’t seem to be doing their duty, and a denial of injuries that medicines might cause. 

The links between the military and medicine are becoming ever more complex as reflected in increasing references to bioweapons.