One of the biggest hurdles facing those with quinism is the current lack of knowledge about it within the medical community at large. Most of those with quinism have found that their family doctor’s and other healthcare professionals either lack knowledge of the subject, or are skeptical about it. Something that is frequently asked is “what information is there that I can/should provide to my family doctor about quinism?”
Links For Valuable Articles
I have listed a few journal articles that patients can give to their medical professional that will provide valuable information to them. You can either copy and paste the links below to give to them or download and print a hard copy to give to them.
These articles were written by Dr. Remington Nevin of the Quinism Foundation.
Screening for Symptomatic Mefloquine Exposure Among Veterans With Chronic Psychiatric Symptoms
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A Matter Of Saving Lives
When I spoke of saving lives I was referring to the lives of the veterans and any others who are living with chronic quinoline encephalopathy, or quinism. There are a great many such people out there who do not know that they have quinism. These are the ones who were told they have PTSD, and are feeling frustrated and hopeless because they aren’t getting better, in fact they seem to be getting worse. They are driven to such despair that they view suicide as the solution, not knowing that the cause of their problems is actually brain damage brought on by a neurotoxic drug.
There are many who have stepped back from the abyss after learning this information but there are many, many more out there who are ready to leap into it. Families and loved ones of those now suffering or those who are left behind following suicide also benefit from the knowledge that what happened was because of a drug. It can help provide a sense of closure for them.
Democracy is also in peril.
In Canada, Australia, and a number of other democratic countries governments are actively working to subvert the rights of their citizens. These governments need to be called out and the people need to know what is at stake for them.
A democracy needs to have checks and balances in place to ensure that government isn’t breaking the law or becoming a dictatorship. Whistleblowers play a vital role in these checks and balances, and so it is vital that they be afforded protection under the law. Otherwise they can face imprisonment for doing the right thing, even if they are ethically and legally bound to do so.
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Veteran’s Advocate John Dowe Discusses The Mass Tort Litigation, What’s Ahead In 2020, and Advice For Families Affected By Quinism
With Hosts Marj Matchee & Kentrina Jenkins
In this episode of their new series Marj and Trina talk with John Dowe about his own experience as well as other topics relating to mefloquine and veteran’s advocacy. Look for John in future episodes as he will be a contributor to the show.
In this episode Marj and Trina have a conversation with Todd Gilman, a veteran who literally owes his life to the Calgary Veteran’s Association Food Bank. Hear him tell his story and that of the organization that is much more than a food bank and serves as a model that can be utilized across the country.
This Mefloquine Story is from a post made by Canadian veteran Bruce Given. In it he shares a comprehensive history of his life and experiences as someone with chronic quinoline encephalopathy, or quinism. He has joined the ranks of veterans who are advocates for their brothers and sisters in arms and who speak and defend those that cannot do it themselves.
For context I am including the Veteran’s House post that Bruce mentions at the beginning of the post. As usual any editing I have done is to format and not to content. The words written by Bruce are taken directly from the Facebook post.
This is a follow up to the aforementioned letter in the post from Veterans House Charity. Therefore if you have read it you will understand better as to where & how this summation followed. I am sharing as it has been suggested that others could benifit from my doing so. So dont shoot the messenger but definately feel free to comment & share your personal experience. Lift & remove the stigma involved.
As I read through the letter posted 23rd December, 2019 I felt a need to personalize my response using it as a guide to relate as to my experience as such with Mefloquine. I have shared & forwarded the original letter to my personal medical professionals & the veteran community. This needs to be brought forward to any & all concerned from Dr’s to Health Professionals of all sorts including those decision makers within the health system & policy makers like our Members of Parliament.
I am Bruce given. I was administered Mefloquine while on tour in Haiti from March to September 1995. An additional month dosage upon return from the tour made it a 7 straight month for me taking Mefloquine. I experienced symptoms listed on the manufacture’s product monogram black box warning. It still affects me & my family today. The attached letter is asking you to help me in dealing with this Quinism. I retired after a 24 year career with DND & have an infantry background. The original letter is a lengthy read, however it is hoped that the medical providers providing medical assistance to me & others whether physical or mental treatment will provide a better care and understanding of what it is that I/we are suffering from Quinism & deal with.
I have had the same General practitioner since 2003. I have advised him of my psychological treatments along the route all this time as well including any other treatments. I’m not still convinced that I have convinced him of where it is that I am at because of this neurotoxic drug. I believe this letter is a continued step forward in the right direction to him & others.
Amongst the listed psychological conditions, I also relate to most if not all of them; anxiety, depressed mood, mood swings, agitation, poor frustration tolerance, extremely vivid nightmares, difficulty making decisions, restlessness, confusion, problems with memory and attention, as well as sleep dysfunction.
I concur with the accompaniment of other non-psychological issues including digestive problems/IBS which was an immediate issue with the Mefloquine (in relation, I just had my 3rd colonoscopy a few weeks ago), dizziness, vertigo, tinnitus & other hearing challenges/hearing aids, vision disturbances/focusing difficulties, sensitivity to noise, sensitivity to light, unsteady gait, migraines/occasionally headaches more so , thermoregulation difficulties/night sweats, swallowing issues/acid re-flux problem, levels of sleep apnea unable to balance the issue with the sleep apnea machine, I can’t keep it on my head long enough to be useful…it’s another thing that sits in a box not being used & not helping with the problem after serious attempts to work with it. I had a quadruple by-pass in 2010 & an additional Stent in 2011. Stress is HUGE!
I’m aware that Mefloquine/Larium did not affect all who took the medication, maybe 10% or so (one is too many & some have taken their life because of it. I also have teetered upon that situation on more than one occasion), & know that it has not affected all in the same manner. The degree to which one may be affected also varies between individuals & the ailments reflecting the poisoning from that drug.
Documentation from DND/DVA confirm that my Chronic Myofacial Pain Syndrome relates to my Neck & Both Shoulder Girdles. This pain is with me all day every & I’m only not in cognizant pain when I’m not conscious. Since my return from that deployment to Haiti I have had to take a digestive pill with each meal for the past 25 years & I gather for the remainder of my lifetime. Other issues are also chronic & one compounds the other in relation to how my brain & responses to my surroundings/conditions react within myself & to those around me.
Confounding Diagnosis: I have a diagnosis of PTSD, some of which can be related to OSI from deployments on tour & others in relation to my service in general. I have an infantry background where I believe that exposure to blasts/explosions/transport in armored vehicles etc. which have never been taken into account in relation with Quinism as it hasn’t been a diagnosis as such until recent years. I have never been diagnosed with a TBI as such formally that I can tell. Something that surfaces in this regard are multiples of Mini TBI’s as with the aforementioned of the exposure, use & training in things such as Grenades/Mortars/Karl Gustaf/Heavy Machine Guns/TOW Missiles/Mines & the travel/working relationship to armored vehicles, aircraft whether fixed wing or helicopters. The list of such exposure is huge & varied as was my career.
It’s of interest to note that the screening of past exposure to medications was not apparent to me whether to Mefloquine/Larium or otherwise. I’m not a Dr. & was waiting on medical records. I filed for those medical records through the Library & Archives of Canada (ATIP&PR Section 395 Wellington Street Ottawa, Ontario K1A 0N4) back in October of 2018 & received the disk last week. There were over 700 pages in that documented disk. I found 2 pages that related to my tour in Haiti, (Shy for a lengthy tour I thought) where Mefloquine was mentioned. Bonus as for the acknowledgement where many say they have no records as such, sad. However it is not necessary to prove you have taken Mefloquine if it is on a general record already as to what deployments were issued the drug since 1990 ish. You can still submit to the lawsuit by HSH Lawyers & they will advise you one way or the other. I encourage you to do so.
I have never nor do I personally know anyone who has been part of any study or research into these issues on any national or international scope. I would make myself available for such if able to do so. I have solicited my Dr to look into & advise me of any such studies. If you have been a part of such a thing or know of one up & coming please share that information.
Although I am relating to the veteran side of things, I am also aware that Mefloquine has & is in use with the general population for vacation travel & humanitarian missions around the globe. In the view of vacation travel dosages are of a short-term duration it has been determined that even a single dose of Mefloquine can & does have potential consequences. Be aware! Read & head the warnings labeled. I have been amazed to coincidentally be in contact with professionals outside the military who have taken & can relate to Mefloquine/Larium.
Problems with Consistent Primary care & Consistent Medical Records: I served from 1977 to 2000 in Uniform. An additional time as a civilian employed by DND & a couple of years as a Commissionaire. What I may maintain of my old records is in fact old & prior to my remuster to an Engineering Career. Problems for obtaining any records is a bulk issue with a minimal staff being years behind in fulfilling the request from archives for those records. Still concerned over censorship of those records when I received them.
It has been my fortune to having had a particular Psychological/Psychotherapy Provider who put together much of the associated symptoms which are of medical concerns towards some recovery from those issues. The man was at the end of his varied career that had a huge association with the military, (he practiced on a Base for years), first responders (His son is a Police Officer) & others. With his 40 plus years as a practitioner his knowledge & experience is vast. Thus the advantage of a person educated as such was totally valuable & desirable from a patients perspective. He absolutely helped turn my life around for the better. Thank You Sir!
I’m not sure many providers share in their medical concerns over their psychological treatments with/between other professionals. They are conservative in nature of their profession & limits imposed upon them. That one outstanding Dr. gave me an annual page or two assessment to bring issues to the attention of my General Practitioner which certainly didn’t hurt over the years with either of them. I would like to hear that this is becoming more common place in the way forward for the many rather than the few. I understand there are restrictions & I’m stating responses in a limited manner.
Recommendations for Treatment: Screening for past use of Quinoline anti-malarial medication use. No recollection of ever having been asked this by any practitioner. The point to note here is that if never having been asked is to be prepared to offer up that detail. Since becoming aware of the details over the recent years many of those blank voids have made more sense now as to how or why certain things transpired as they did then.
What type of screening for TBI is there? Who do we ask in relation to this? What do we need to be believed that this is a potential problem & given the benefit of the doubt to follow through on it? I was shocked to know people in more precarious situations had not been tested either. Brock Blaszczyk told me so just yesterday. He’s famous for having spoke up to the PM at the Town Hall Meeting in Edmonton where the PM said “WE are asking for more than they are able to give”, seriously this should haunt that man forever.
I had an initial assessment for Vestibular issues. This was as it was first sent out that it could be yet another issue to look into & treat the effects as such. I have to say that I was not impressed by the assessment & it’s openness to alternative interpretations. It was far from scientific with instrumentations lacking. Since then I have found that there is a more clinical/scientific measurement of such issues & will be pursuing that avenue. I have also forwarded the original letter in its entirety to them. Following upon that the person seeing/testing & treating me also took Mefloquine for 5 weeks on an African Trip & can relate, wow, the world is shrinking.
Although I know my mind has some messes within (maybe a lot), I’m not liable to track the situations in a written/diary format. Like all those New Year’s Resolutions we all fall off of after a while this process follows the same relationship to not being able to keep it up over time.
I think I am capable yet to still recall or have some form of documentation to reflect upon for progression in a positive fashion. I’m old school & an old sort of limitations with my own persona to change everything at once or be able to follow up on all I should have/could have/might have done. I would certainly volunteer for a sleep study. Who does that? Where? How do I get a referral? Perhaps because I was already previously diagnosed with sleep apnea I wouldn’t qualify but there are other sleep issues around those parameters of short & broken sleep, difficulties getting & staying there, night sweats, dreams/nightmares etc.
Referrals to Psychotherapy & Psychology experts is a tough call in so far as who one may be comfortable with is not necessarily the same comfort level with another. I would happily suggest that we all find someone in those professions to be able to find some tools to be able to be more capable to find & work with solutions & tools to deal with the daily/weekly/monthly/yearly issues that hold us back from going forward.
My main point here would be to encourage any & all to link up with a Psychology/Therapist treatment program. The limited number of appointments can be expanded upon by doing the paperwork & substantiating the request. I had intensive therapy with both a Psychiatrist & a Psychologist for some 7 years. I then went without either for another 7 years. At the point of becoming as yet another suicidal statistic I returned to a Psychologist who just happened to save & extend my life & the quality of it. Sadly, he has retired, deservingly, however I have moved on as well & in a better state of mind because of him & the treatments over the years. Regardless if seeing someone at differentiating intervals I think that maintaining some sort of contact with someone as such over the years, if that’s possible, is critical in them being able to professionally make recommendations as to forward progression or what they can view & or gage as a lack thereof.
Having mentioned Substantiation I would like to expand upon where that counts. That is also where our Dr’s have to put more of their emphasis upon the paperwork involved.
Other than checking off the boxes on any particular form a substantiation in the way of a paragraph as opposed to a sentence can convey the requirement to be better understood & assessed as to a necessity rather than a convenience per say to follow through with the request in a positive manner. I can relate substantiation to this in regards to everything from my dentures, where we as veterans have a 7 year span between replacements as opposed to civilians 5 year span (that extra 2 years is a lot of wear & lack of chewing capability etc.), medications in expanding or reducing quantities (cost measures versus patient needs/improvement), replacement medications which eliminated others, & the ability to see more than one therapist & for more than the limited number of treatments.
Deployment that exposed me to Mefloquine was Haiti in 1995! Known to DND/VAC as UNMIH Op Pivot. Its’s not listed amongst the deployments list in the letter but left open to other deployments from 1992-2007. It was accepted by the Law firm HSH Lawyers & I now have proof from my medical documents that I just received.
Page 5 is a Neurobehavioral Symptom Inventory (NSI). This is a standard questionnaire amongst the psychological community & I have filled & filed several over the years between different practitioner’s & it’s an ongoing check up on progress or regression. Paperwork is necessary! Ahead to page 17 it states & I couldn’t agree more that in the absence of medical recognition, veterans, myself included, have experienced considerable frustrations. There have been numerous uplifting moments amongst us that our suspicions to something else being responsible for our conditions not being recognized otherwise are now confirmed. It has filled in several blanks as to what & why we are the way we are.
I knew I came back from Haiti a different person. The problems were much different than the PTSD related conditions of a war-torn country during a war when I had been deployed to Croatia in 92/93 wherein the war was from 1991-1995. I have stated feverishly perhaps that my PTSD symptoms are in fact PTSD & verifiable as such. My emphasis on that does not diminish the renewed emphases on the Mefloquine/Quinism side of things which are also verifiable.
I attributed some of it to the 3rd world conditions there but not all inclusive as to how that was relative. It was around that same year in 1995/96 when the Gulf War Syndrome was headlining the news. I hadn’t just returned from the same theater of conflict but certainly found I could check off the majority of those symptoms as relatable to me personally. Now I know why! I have only been recognizing these symptoms as related there to what’s now becoming more recognizable as Quinism within the past 3-4 years as the advocacy for such has surfaced & grows.
The personal cost has been huge. Divorced the first time after a 24 year marriage, I lost my wife, my kids, my home, my finances, my security, my self-esteem/self-worth, my mind & my soul. I divorced a second time after a 6 year relationship where adding insult to injury I lost anything I had salvaged from the first marriage & invested in the second. I am married yet a 3rd time just within this last year & there remains plenty of difficulties in maintaining that relationship as well. We are however more cognizant as to why & unified on treating the cause.
I’ve had homicidal thoughts in the past but naturally common sense prevailed & they were only thoughts not actions, suicidal thoughts/idealizations came & went & not sure to ever really be totally dismissed, been homeless during second divorce…one of those couch/garage/basement guests, helpless or so I thought for some time, financially ruined/still deep in lawyers debts & emotionally scarred for all of my remaining days.
It always will be a struggle! There is no cure! There are however coping mechanisms. I faced many demons & have more to deal with yet. Health issues & recovery is an ongoing venture with which I still manage to find a reason to continue & while in public try to remain/maintain a normal image within others perceptions as to what normal is.