Appalling vaccine injury

welcome to this talk and I'm very pleased to welcome uh Brienne dressing all the way from Utah Brienne thank you very much for coming on oh thanks for having me um and now you have suffered greatly over the past few years so it is a noble thing to to share that so anything you share with us we will appreciate so maybe I think it's probably worth noting actually just before we start there's been quite a lot of publicity this week you've been in the in the times in the UK you've been in the telegraph in the UK uh you've been in the Daily Mail in the UK you've been on Bloomberg internationally so you know the the uh your story is getting out there which is is encouraging but but what is the story Brianne and maybe if you start with a bit of a timeline just just take us back a few years well I guess we can start at the beginning you know back when life was normal um for me before uh my situation I'm in now um I was a healthy mother of two young kids and a preschool teacher my kids were six and eight at the time and everything I did was for them I took them to sacur practice took them to you know gymnastics class and helped out at their schools and uh made sure that they you know had someone there to comfort them if they scraped their knee and my world in my husband's World revolved around our kids you know just like a typical young family um I was healthy and you know uh did rock climbing and skiing and snowboarding and three weeks before my life changed um I hiked a local mountain here it's called Mount typog and it usually takes n and a half hours on average to do and I did it in seven hours like it was no problem so wow um yeah so I was in I was in good good shape and um so when the pandemic hit I did all of the things that that you know that the science and the media was telling me to do I did the social distancing um I made sure that my kids were wearing masks at school and we live in a place where people didn't like wearing masks and put masks on their kids so we definitely were the odd men out for sure um and it was really just because we and we still do live by our beliefs right it doesn't matter what our community or anybody else says if if we feel that it's right then we do it um but because of that when the call came to roll up my sleeve to get my covid vaccine it wasn't a question of if I was going to get it was a question of one so I felt privileged to be able to be part of the solution to get us all out of the pandemic and um I enrolled in a clinical trial for Astro zenica here in the United States so that's kind of the the beginning you know the the the start of how this happened this is 2020 is it this is 2020 yeah so um I and went in for my one and only covid vaccine on November 4th 2020 and when I went in the the test Clinic was very thorough in reviewing the contract with me and I felt very confident going into it because of how the contract was written and how thorough they were because they went through every single page with me and they helped me understand exactly what side effects they had seen so far which at the time it was there was a case of Ms in the UK that they had unraveled of course they said but that wasn't from the shot so I wasn't too worried about that but they did say uh GBS was another complication and so syndrome yeah yeah yeah Yan B and so it was yeah it was it seemed you know like it was not going to be a big deal I had never had any issue with any previous vaccine so yeah boy was I wrong and these side effects were put forward as being remarkably rare you were just being mentioned for completeness yes extremely rare So and the list wasn't very long at all but this is what's interesting to me is this was to towards the tail end of the phase three clinical trial for astrazenica um at the very end of November fizer started rolling out to the public here in the United States so um my suspicion is is Astro zenica probably knew more at that point in time than what the informed consent document showed um but that being said because of those side effects that were listed I did take those side effects seriously when I did end up with side effects yeah so of course the astroica vaccine was never authorized in the United States but a lot of people in the United States like yourself step forward to take part in the phase three clinical trials to test its efficacy and and its safety which um at the time of course we believe was a a philanthropic thing to do this this was how it appeared were we going to get out of the pandemic at that at that time yeah what happened when you got when you got the shot Brian my shot uh it's you know my reaction it started right away um it started within an hour of my injection and it started with tingling down the same arm as my injection and I thought it was strange because it's a very foreign sensation it felt as though I had fallen asleep on my arm for hours right it's that painful sharp pulling sensation that's a little bit electrical and numb at the same time that's what it felt like um and I thought it was odd later that night my vision had become blurred and double and then that night I had a typical vaccine response with the fever and everything else and I was like oh I definitely did not get a placebo it's very obvious with that reaction yeah and then when I got up to get ready for work the next day my left leg was slumped and I was always walking into the left doorways for some reason it was always to the left um I didn't have dropped foot it more like my entire leg was sagging so that day at school um my cute little preschoolers I remember telling them oh your little voices are so loud today uh but it really wasn't them getting louder it was my sensitivity to sound wrapping up as the day progressed and by the end of the class period I had the lights turned off in the classroom and um I had the kids parked in front of a Learning Channel in front of the TV and I was just Hol Up in the corner waiting for the parents to come get them so it was that was the last day that I taught and then over the next two and a half weeks the symptoms just kept piling on Tac cardia Brady cardia um limb weakness uh I lost control of my bladder I had this severe that pins and needles moved from the one arm through my chest over to the other arm and then it moved from my head all the way down to my toes and then it just turned into this nightmarish electrical surge over over and over through my body all the time um it was so bad that I couldn't eat I couldn't sleep the only thing I could do was remind myself to breathe and from then on it was just kind of like this I mean not to be dramatic but it was just unrelenting torture and it's still there to this day all those symptoms are still there other than the sensitivity to light and sound are gone now everything else is still there I've just figured out how to manage the symptoms to bring the severity down enough so I can think I can eat I can have conversations so so you've got this constant sensation all over the surface of your body all the time yeah it's actually it feels like it's inside it moves with my heartbeat so it moves in and out from my heart all the time it's it's the most foreign and unnatural sensation you know that I've ever experienced in my life and it's just insane that I am plagued with it every moment of every day for the rest of my life um yeah it's it's not fun and the other people that I know that have been injured in a similar way from Astro zenica um I feel I feel their pain you know I know exactly what that's like and I wouldn't wish it on my worst enemy so this is actually a constant pain it's not just the discomfort it's actually painful yeah yeah yeah it's painful it's it's a prickling stinging pulling sensation and it like it feels like it's teeny tiny nails moving in my veins comes from the heart moves out and I can feel every single beat that my heart beats because of this moving in and out it was it was in my head at the beginning in my brain and it was so bad that my eyes would vibrate like this and I couldn't see hardly anything it was bad so that's gone too but it's still you know everywhere else in my body I mean I'm I'm just I'm just stunned I mean let's go back to the first week or two that you had this um how how did you sleep how did you eat how did you do anything I didn't I didn't I mean i' I've got to be totally honest with you I mean it almost put me six feet under and that's not an exaggeration I had a plan um I had everything you know set up CU all I wanted was relief it wasn't that I wanted to be done it was just I needed a break and there was no break that would ever come so I just needed to be done and so yeah I had a plan and um the only reason I'm alive to be totally honest is because of my suppor of husband and he recognized the signs right away and he didn't leave me alone for even five minutes for months while this was going on um and it's not like I was pacing around you know like telling people I was going to do it or whatever but because of his training um he knew the signs and what to watch for and as soon as he saw it he contacted a therapist and was like what do I do and uh and so when he would go to the store or if he needed to go into work he had someone come in and sit with me in the dark so just felt you had to be out of this constant yeah I just needed an escape you know and it's it it really breaks my heart because I didn't talk about it at all um for a long time right because it's embarrassing right because nobody wants to feel like they are that weak that they can be brought to their knees you know to the point where you know what I mean anyone can yeah the the level of suffering is is terrifying and yeah um but what finally got me to open up was um a really good friend of mine who is dealing with near identical symptoms from fiser uh she ended her life and that was in May of 2021 and that was what what sort of reception did you get from the doctors you reported this to well uh they all wanted to know what the drug company had to say about it because they figured the drug company would know what to do about it that was the first thing they all asked well what does the drug company say so this this was this was outside of the doctor's experience I mean I've never heard of anything as terrible as this yeah yeah and there it's interesting because there were a couple of doctors looking back through my medical notes um that knew that this was a neurological complication to a vaccine so they must have seen this type of reaction previously I mean just listening to what you've said it's to me it's obviously a severe neuronal inflammation that's being described I mean that is clinically that seems fairly obvious yeah and and that's really what at least your doctors took you seriously to begin with well a couple of them did most of them did not so when I was admitted to the hospital because my legs were noodles and I was Inc continent and the SE severity to light and sound was so bad that I lost 10 pounds in that first two and a half weeks um the the neurologist they they gave me a bunch of drugs to try to Tamp down a silent migraine and I was like okay let's see if that's what it is so they drugged me up really good for three days and then of course the medications didn't do anything because that's not what it was and I remember the lead neurologist came in and she sat down and and she looked at me and she said you know CO's a really hard time and uh we think you just got really stressed out and then you went out and got this vaccine and you just kind of had a mental breakdown so and I have to laugh about it because it's so ridiculous neurologist this is a neurologist a physician yes like one of the best in the state right and so they didn't do a spinal tap they didn't run any you know I didn't even get an MRI while I was in the hospital I got a CBC blood panel and that was it like super simple testing this is all in your head just You' just gone a bit nutty Brian it's just unbelievable yes ex yes and they so the team with all the follow-up they kept saying well you know if you talk to a psychologist and so they actually convinced me that it was anxiety because I was like oh these These are the professionals so I went to a psychiatrist and the psychiatrist did a neurological evow because he was board certified in neurology and he said I don't know what this is but it's not anxiety this is there's something going on in your body um and so he sent them a letter too and said hey you guys need to help her they still wouldn't help me um and then the NIH got involved and the National Institutes of Health in January 11th 2021 so if you think back about where you were in January 2021 the world still largely had yet to get a shot right most people there were people in the US that were just barely starting to get it um and the NIH was very interested in this reaction they were very concerned that it was in the clinical trial with astroica and they started a study that day and they tried to work with my home neurologists that kept persisting it was anxiety and the NIH said she needs IVIG she needs plasm veresis she needs some immunotherapy to stop the Cascade of the reaction and my medical team at home refused so the NIH took pity on me and flew me out so I was in bethesa Maryland and um at the facility there and they did Top ofth Line testing evaluation treatments and I got IVIG there and I went from bedbound to being able to walk around um and I have the data actually on my Apple watch my walking heart rate was being tracked on my Apple watch and I didn't know it at the time and it's interesting because it's nice and low when I was you know before I got my shot and then it shoots up literally the day I get my shot and it stays High until I go to the NIH and right when when I get IVIG then it goes back down this is the intervenous immunoglobulin that would hopefully damp down the yeah and it's there's not a whole lot of research out there on this but there and so they're not sure if it's a you know just expanding the blood volume that's doing it or if it's actually calming down some type of autoimmune Cascade that's triggering these postural you know orthostatic type symptoms um either way it worked in my case and there was documented evidence you know to show that it was effective I mean I mean how what level of relief did you get from this appalling all over body pain sensation so at the beginning it was a 10 out of 10 and after my first couple of runs with IVIG it brought it down to about a six and so now it's sitting at a steady four or five right now so yeah so it's it's bad enough that it definitely is something where I still have to have a lot of willpower to IM mentally to cope with it be okay with it okay with it um but to be able to coexist with this situation so then I can be present for my kids so I can be present for my husband for myself too um the worst place for anyone that's injured is when you're trapped inside your own head with nothing to think about but your own painful Sensations going on whether it's the heart rate fluctuations the tenus the joint pain nerve pain um that's the worst place to be so being able to connect with others has been a really wonderful way for me to be able to get out of of that um situation in my head I andan what you're describing is probably the worst syndrome either as an adverse reaction or as a medical condition I think I've probably ever heard of it just sounds I just can't I I just can't just can't I'm I'm really struggling to just you know imagine how how how you're functional is it's just amazing that you can it's it's hard you know um it's there's a lot of people that they've ended their lives because of it you know um I'm really really really really stubborn and um there is no way that I'm going to let the drug companies have more of me than they already have and so I've done a lot of a lot of mental work to be able to figure out how I can compartmentalize but I will be totally honest I still have days where this overwhelms me and I need to you know go through the cycle of grief and letting you know letting those feelings move through my body and my mind um um they can't you can't just let it all build up it's got to it's got to move through you you know so and that's something that's you know things that we can learn from other people that have dealt with complex chronic illnesses for hundreds of years thousands of years that is not new learning how to cope with chronic pain um and extreme discomfort is something that people have been trying to figure out for a very very very long time um and right now this seems to be working for me um for the most part but it still doesn't mean that I'm happy with the situation or I'm okay with the situation but it just means that you know I'm able to do things with the limited time that I have other than sit in silence and try pain in one part of the body is one thing but you've basically got it all over all the time this is just yeah yeah yeah it feels like I'm rolling in Cactus all the time it's just it's yeah I'm just so sorry you've had to go through this it's appalling it's just thanks I'm not alone that's that's the more frustrating part for me because I was in the clinical trial so there's a part of that where it's like okay you know I signed up to discover what this drug could do and now I know very very well what this drug can do and the drug company does not want to tell anyone what this drug can do and and in subsequent order now there's thousands if not tens of thousands of people like me um that are dealing with the same thing and they had no idea they had no idea this could happen to them and actually that's the main reason for doing this video I think because people that are suffering in in isolation will watch this and realize it's not just them know that this is a group of people all around the world um people are not suffering in isolation and uh I don't know if that helps but uh I think a lot of people certainly say that you know they appreciate the fact that they know they're not um is isolated anymore well that you know that's a really important point right because their chronic pain will rob everything from you right um it'll Rob your sanity it'll Rob your dignity um but there there is a certain Comfort certain degree of comfort that comes from understanding that there are people out there that get it and for the people that are like me totally get it but then I also have this just profound love for people in my situation you know because I understand that they most of the time that's the only thing that they can get right that will actually be able to that they are able to receive and I'm hopeful that every single one of those people has loving patient Family Support um that's probably one of the most important things people can do as caretakers is to just be there and just be there in love that's it um it's it's such a simple thing that we keep forgetting but there's and there's healing power in that too there really is absolutely so the the astroica trial it consisted of two vaccines I believe and you only had one so yes so I got azd A1 two2 two right that was the bch in there yeah um so obviously you didn't have the second one um and presumably as far as you know what was this adverse reaction included in the end of trial data do we do do you know that as far as I know I couldn't find myself in there so the New England Journal of Medicine published the astroica clinical trial data H it was released in October time sounds about I believe maybe September um and there's two interesting things there one is they say they follow all Adverse Events for 730 days they stopped tracking my data at day 60 and the other thing is is that they say that um people dropped out that people opted out to get instead of getting the second dose so basically saying that the clinical trial participants that didn't get the second dose they're all dropouts they just you know their L to the system there is nowhere in the report that shows why why they dropped out so there's some really key pieces of of information there that's missing specifically from the astroica clinical trial report uh after meeting other clinical trial participants namely um the kids clinical trial for 12 to 15-year-olds MADD Deary was injured in that trial same thing there she's coded as a stomach ache in that report um madna Olivia tessar she's a clinical trial participant for the madna clinical trial in the United States the report there shows that she had a minor shoulder upset she ended up with severe lymphadenopathy and that's basically where you have you know your lymph nodes are the sizes of golf ball or um softballs and they needed to be surgically removed she now has Tel lymphoma these are all things that are a little bit different than what is being shown in these clinical trial reports so basically you're just a Dropout as far as you know yeah I'm a quitter so your your adversary action May well not have been in that final paper or we we don't know that for sure but if you're classified as a Dropout we don't know but we sure yeah classified as a Dropout and just to be very clear very specific while I was in the hospital um I was unblinded so the clinical trial company that works for astroica called me personally and said you are correct you got the astroica covid vaccine because of your severe reaction we are telling you to not get the second dose so they told me not to get so they dropped you out rather than you dropping out and you would they did say for sure that follow everyone up for 730 days couple of years and and they followed you up for 60 days you no follow up after 60 days no they couldn't get away from me fast enough how do you contain your anger cuz I'm I'm I'm I'm feeling I'm I'm just outraged by this it's but you're the one that's suffering you know and that's but the thing is is you know some okay chronic illness your emotions impact your health right and it it's not like it's just kind of interconnected they are so intimately connected it will throw you into a tail spin you hear all the time with people that get diagnosed with terminal cancer and then Boop they go fast right um and I understand that but I have kids here that look at me every single day they are watching me they are seeing how I'm dealing with this they are seeing is Mom going to let this overrun her is she going to take this laying down those seriously those are the lessons I do not want to teach my kids so I deal with my anger in in healthy ways when it comes up just like the grief does you know um and yeah I have a potty mouth and it definitely has gotten worse because of this but um I can't cannot let the anger consume me uh that's probably the worst thing I can do for myself and my family and it's love that's keeping you going love for your family love for those that are suffering yeah Absolut 100% yeah 100% tell us about the legal action Brienne how did that start and what's happening so uh according to US law there's this little law called the prep Act and the prep act provides incredible immunity to not only the drug companies but to the doctor that put the shot in your arm the pharmacist that's involved the nurses that see you after your reaction the federal health officials that may or may not help you which we all know that they're not helping um but because of this it's been incredibly uh frustrating for everyone that's injured by a covid vaccine in the United States to know that there is absolutely no accountability coming for what's happened to them so that's been our clear understanding after um talking with all of the vaccine injury law experts Nationwide and I just happened to come across a law firm that works with vaccine injury law that they took a look at my contract and they noted in my contract that as agreed to provide medical and financial help in case of a research related injury and it literally says so long as I didn't cause the injury to myself which I don't think there's any possible way I could cause this to myself I've never heard anything like this before so um yeah so they they said you know what we we think there's a clear pathway here uh not through typical vaccine injury law or or Tor cases cont contract law so yeah breach of contract I mean to me as as a an outside Observer it seems patently obvious the contract was breached yeah and if there's anyone that's curious about that um the complaint is written and it's online now and that is exactly what happened there's no emails missing there's nothing there's no context being pulled out of place it's literally from the beginning the drug company was poof gone and the test Clinic was trying to mediate as well as they could between the drug company and me they were reassuring me that payments were coming that the help was coming from Astro's medical team and then after several months then it was just radio Silence from the test Clinic as well and you've had no help or compensation from them at all I did get a settlement letter I got one settlement offer and it was over a year after my injury the only reason I got this settlement offer was because a reporter reached out to astroica asking for a statement in my case before they ran a mainstream story and they told her oh yeah we're working with her on that we're just waiting for her response and literally either while they were talking to her or right after they emailed me a settlement letter for $1,200 did you say $1,200 I literally 1,200 well it was like one two three something so it was a little over $1,200 I mean to be fair I mean that's that that's that's designed to insult you it's not a Ser I mean it's just POS just poster yeah so yeah you know for the first half of my injury the first half of the first six months of my injury I couldn't understand why the drug company was ignoring us and not helping us at all I was like well maybe they're just really busy with that pandemic you know like I gave them so many like reasons and excuses in my head because I couldn't really wrap my head around them being this corrupt right or this dismissive um especially with the contract that they signed but then after that letter came the settlement came in and they misspelled my name too by the way um then I I finally realized that these guys are not anything they don't share any of the same qualities that I do as a preschool teacher that just wants to do my part so my husband got the email because I was getting infused with the medication actually the ibig so and it cost me $3500 every two weeks so I have to get it twice a month for life it cost $3,500 every time I get it and so my husband snapped a photo of me in the infusion chair sent it back to him finally with like a lovely email of like I can't believe you guys like this is ridiculous and then he just finished it with something like now I'm mad yeah so so what what's what's Happening Now what's the next step in this well the lawyers have filed the case and and we are trying to get as many people to talk about it as possible um we're using this as an opportunity to help shine a light on these very serious and important issues with the clinical trials um these are issues that we've learned is not just exclusive to the covid vaccine trials and we want to make sure that um this process is improved um which unfortunately because there's no accountability or no pathway whatsoever for accountability that can't happen right now and and uh what sort of prognosis have the doctors given you personally or is it impossible to say because they no experience of this I mean have the any how's the future looking so it sucks to look at that for sure um my neuropathy is for sure progressing it's something yeah so at the very beginning of my injury I got a small uh small fiber neuropathy test which I'm not sure if they even do those very often in the UK yeah specializ specialized investigation but basically what they yeah okay yeah so basically what they do is they take little skin punches out of your skin on your usually on your legs and they put it under a microscope and they check the fiber density to see how many nerves small nerves are in in in the sample and by doing so they can test and see if your nerves are dying right or if they're still intact and healthy and working so at the beginning my nerves were fine and I got my skin punch biopsy within a couple of weeks my small nerves were fine my EMG was positive at the beginning now three years later it's been redone and now my small fiber neuropathy Test shows that I do have small fiber neuropathy now so it's my neuropathy progressing my EMG is still positive um I've come up with a really good immunologist MC specialist and one of the best um neurologists for pots postero orthostatic t cardia syndrome and they both have done a Litany of tests on Immunology uh autoimmune conditions um they're doing some genetic testing as well and they've identified that I have a screaming problem with Auto autoimmunity that is not defined so it's not lupus it's not one of these others that that we can understand or recognize currently and they said if I want to have a chance at all of getting on top of it and slowing it or stopping the progression that I need to up my game and move um from IVIG to a drug called rmab and rmab is a mab drug that uh essentially wipes out your B cells and they use it in autoimmunity Ms type conditions currently just remind us what EMG is uh Bri EMG they EMG checks your large fiber nerve testing so of course there's the small fibers and that's how you feel in your skin it's actually wrapped around um small fiber nerves are in your heart so if you have small fiber neuropathy your heart does not be you know the best um especially as it progresses it's It lines your gut and your GI tract so people with the slow and gut motility that could be a reason there um small fiber nerves are everywhere and of course the large fiber nerves is much more what people think of where you know my arm can move right my legs can move um so when people think of a disability when it comes to nerve related issues they do think of large fiber damage that you know is easier to see because you'll be walking with a cane or in a wheelchair uh those type of you you've got both injuries yeah yeah so I've got what is your Mobility like now can you walk on your own I can walk on my own um because my neuropathy is progressing the numbness is getting worse and so I can't feel as much when I'm walking so I actually fell down my stairs about four weeks ago my daughter watched that was the worst part um and it's just because I can't feel my feet you know why you're putting your feet you can't feel where you're putting them yeah yeah yeah yeah yeah you know like I have elderly parents I understand how that goes so now I'm like oh well I'm young and definitely in senior citizen mode so I I need to be aware of of those types of Hazards just around the house now so I out my hand pretty good spraying my ankle pretty bad um had to call my neighbor in to help so that's that's the new reality right I mean it's there's no certainty in any day um it's you don't even know if you're going to get out of bed one day to the next I'm just uh overwhelmed by the severity of the the sensory symptoms though that you've got this feeling all the time it's just um how would that be fortunately for most of us it's beyond our ability to imagine it but but you're living with that and I just um I just I just think it's amazing that you're able to be as functional as you are it really is quite quite mindblowing it's either that or I let it swallow me whole and I die um for real those are it's two two choices and I don't have a choice I've got kids yeah well let's hope uh this reaches lots of people Brian I suspect it may do there'll be a lot of comments and uh people will recognize components of what you say um I recognize components of what you say from many other people but the level of severity you're describing is just another another order of magnitude really so um myself and everyone watching this we're just so sorry you've had to go through this level of suffering and um and basically it's all been unnecessary as well which is the irony of it yeah like had had Society been able to learn from my case and you know make the products safer um inform other people so they can get intervention earlier than I did than I mean the trial should have been stopped at the time that should have been it as far as I'm concerned you know it's just that carried on with the level of that conversation happened in the test Clinic actually in my first evaluation after my reaction so they said oh you need to go make sure that this isn't Ms because it's not a mess then we need to make sure that astroica knows because they'll probably have to put it back on hold that's it sounds nothing like Ms nothing like Ms so I've never met anyone where their Ms with overall sensory sensation I've never I yeah it's true and I kind of I mean I don't have MS but I think I would rather take a test drive with that one because you're numb your lips don't work the way you want it's different I mean I'm sure you can imagine sitting down at the end of a busy day and you just want to relax and unwind there is no relaxing or unwinding for me period um when my kids sit next to me you know to relax time with Mom and they're thrilled right and they I can't con pretend pain all the time and yeah I'm good at pretending that's what moms do though moms are good at pretending but yeah it's it's not an easy way to go it's not an easy way to live thank you for sharing this really appreciate it and uh obviously anytime you want to come on and give us an date you would be um more than welcome anytime we wish you the best for the outcome of the condition and by some miracle let's let's hope it can improve I mean I know the prognosis is not good at the moment but well I'm hopeful you know just like you I'm hopeful that as we start to push this whole issue in the direction of acceptance that we can get more and more eyes on this and solutions to come that's I'm hanging on you know with an iron fist actually for that I do I am hopeful that maybe the took some map does you know knock this down so it's you know really not so bad um there's all kinds of other therapies that people can try too uh there's pea supplement Palm meal lethal big long word um but I can send you a link to it um but it's incredibly helpful for nerve pain I've tried all kinds of medications for nerve pain and none of them touched it right Gaba pentin wasn't for me it's all the standard things the amitri and the Gabapentin the pro Gamblin all yeah all of them right and they all have like a laundry list of side effects that make you a zombie um so the Pea has helped dial that down quite a bit um the food those standard neurolog those standard neurop pane meds didn't make any difference no not for this no it just it just made me like a stoner is really what it felt like like I was just not with it at all so but yeah um the food modification I'm sure you've heard that before was huge so I cut out gluten cut out Dairy and corn soy um and a couple of other things that set me off and that's helped significantly um I want to say even without the IVIG the ivag would do absolutely nothing for me if I didn't clean up my diet um and Americans we eat terribly anyway so I was doing myself the favor there but it's it's dramatic it helps with my brain fog um the food sensitivity issues also obviously but the GI issues uh the skin issues the um nerve pain and the vibrations went down as I changed my diet yeah I mean I mean what we need of course is massive International Research into this everyone should be collected into a cohort the uh the best you know we need a Manhattan Project yeah that would be amazing right I mean and on that to attack this yeah and on that note you know because you know just as well as I do that there's a lot of people that are not that are out there and they're not going to wait around for someone else to figure it out right so that's kind of one of the things that we do um at react 19 the it's a patient advocacy organization that I co-founded and we have a a study that's IRB approved that we're running right now um with in partnership with the University of Maryland and we have a thousand people that have completed the study so far and it's open for another uh 1500 people so this study it asks all kinds of um questions asked about simp symptoms tests diagnosis and most importantly treatments that people are trying so right now we have over a million data points on different therapies and diagnosis um and tests that people are using to pave a pathway forward for um their own improvements their own recovery and obviously the goal of this is is for us to figure this out ourselves we can't wait around for other people to do it so we're going to do it ourselves um I'm really encouraged and excited to see what the DAT is um showing so far we're about to release it in the German language and French language next and after that we're going to expand to Spanish and Italian so why aren't you releasing in English straight away I should I need to we definitely need to finding someone to publish it of course is the that's the goal so we're going to try to be very um strategic about about how we get this published because it's got to be published and we're being very careful and metic meticulous with how the data is managed uh to ensure that this thing will hold up to the scrutiny required to be able to get this type of information into publication yeah yeah are you finding that particular therapies are good for everyone there's certain things that help everyone no or is it different for every individual it's different for every individual and that's why we're really wanting to look into what types of diagnoses people are having put these people into symptom clusters and then and then also we need to also identify what their diagnoses are that they have what types of tests they have to see if we can then tie that to how people are having benefit how some people are having you know catastrophic effects and see if we can start putting some of those pieces together um but of course you know just one really is it really is just beginning isn't it the research this is just yeah and this is something that's totally we're doing it free so it say Grassroots as it comes um we are yeah we're just paying for the the server that protects all the health information and maintains it and everybody else is volunteering their time for it these types of research so there's no there's no money from Big farmer going into this what a coincidence right I it's going to be interesting to see um if they will jump on at some point maybe in 10 15 years when they realize how much money they can make off of treating us um but they're not there yet yeah Brian thank you so much really appreciate it thank you and uh do do do do do come back and update us literally anytime and well do I'd love that and and and and you know on behalf of all the people that recognize that they're suffering similar things you know thank you they would appreciate this I'm I'm I'm yeah I'm going to stop now I'm just overwhelmed with what you've told me it's just incredible but thank you so much yeah any time I appreciate it thanks for being such a good listener you know there's a lot of people and you know I have family members too that all of my family members have been very supportive and helpful but I have one brother that just he can't do it makes them uncomfortable so for sure but I think that's what sets you apart really it's you that's it's you that's done the suffering Brian it's um yeah for now thank you so much well thank you okay try to have a good night

Channel: Dr. John Campbell

Views: 968,577

Keywords: physiology, nursing, NCLEX, health, disease, biology, medicine, nurse education, medical education, pathophysiology, campbell, human biology, human body

Id: re2rTfCWuVg

Length: 49min 18sec (2958 seconds)

Published: Fri May 17 2024