Appalling vaccine injury

as an opportunity to help shed light on these very serious and important problems with clinical trials, these are problems that we have learned are not unique to covid

vaccine

trials and we want to make sure that this process improves, which unfortunately because there is no accountability or any path to accountability that cannot happen at this time and what kind of prognosis the doctors have given him personally or it is impossible to say. because they have no experience with this, I mean they have what the future looks like, so it sucks to look at that for sure, my neuropathy is surely progressing, it's something, yeah, at the beginning of my

injury

I had a little small fiber neuropathy . test I'm not sure if they even do those very often in the UK yes they specialize in specialist investigations but basically what they do okay yes basically what they do is they take little bumps out of the skin from the skin , usually in the legs, and they put it under a microscope and check the fiber. density to see how many nerves there are small nerves in the sample and by doing that they can test and see if your nerves are dying properly or if they are still intact and healthy and functioning so at first my nerves were fine and I had a needle biopsy of skin in a couple of weeks.

My little nerves were fine. My EMG was positive at first. Now, three years later, they did it again and now my small fiber neuropathy. The test shows that I now have small fiber neuropathy, so my neuropathy is progressing. my EMG is still positive. I have found a very good immunologist, CM specialist and one of the best neurologists for postero orthostatic cardia syndrome and both have performed a litany of tests on immunology. Autoimmune conditions. I'm also doing some genetic testing and they've identified that I have a screaming problem with autoimmunity that is not defined, so it's not lupus, it's not one of these other ones that we can currently understand or recognize and they said if I want to have a chance to get over it and slow it down or stop the progression I need to up my game and go from IVIG to a drug called rmab and rmab is a mab drug that essentially kills B cells and they Use it in type M autoimmunity conditions currently just reminding us what EMG is uh Bri EMG, the EMG checks the evidence of your large nerve fibers, so of course there are the small fibers and that's what it feels like on your skin, it's actually wrapped around the small nerve fibers. your heart, so if you have small fiber neuropathy, your heart is not the best, especially as it goes, it lines your gut and your gastrointestinal tract, so people with slow intestinal motility could be a reason why there is small fiber nerves.

They are everywhere and of course large nerve fibers are much more than people think, you know, my arm can move well, my legs can move, so when people think of a disability when they When it comes to problems related to the nerves, they do think about great damage to the fibers. that you know it's easier to see because you'll be walking with a cane or in a wheelchair uh that kind of you guys have both injuries yeah yeah so I know what your mobility is now can you walk on your own? I can walk on my own because my neuropathy is progressing, the numbness is getting worse and so I can't feel as much when I walk, so I fell down the stairs about four weeks ago and my daughter saw me, 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 can't you feel where you're putting them yeah, yeah, yeah, yeah, you know, I have elderly parents, I understand how that goes.

Now I'm like, well, I'm young and I'm definitely in old person mode, so I need to be aware of those kinds of dangers that are in the house now, so I stuck my hand out pretty good, spraying my ankle pretty bad. I had to call. my neighbor came to help, so that's the new reality, right? I mean, there is no certainty on any day. You don't even know if you're going to get out of bed from one day to the next. I'm just overwhelmed. Because of the severity of the sensory symptoms, you have this feeling all the time.

It's just, what would that be like? Fortunately for most of us, it's beyond our ability to imagine, but you're living with it and I just, um. I just think it's amazing that you can be as functional as you are, it's pretty mind-blowing really, it's either that or I let it swallow me whole and die, um, really, those are two, two options and no I don't have a choice, I have kids. , yeah, well, hopefully this reaches a lot of people, Brian, I suspect it may work, there will be a lot of comments and people will recognize the components of what you say.

I recognize the components of what you say. You say that about a lot of other people, but the level of severity that you're describing is just another order of magnitude, so, myself and everyone watching this, we're really sorry that you had to go through this level of suffering and um and basically, everything has also been unnecessary, which is ironic, yes, if society could have learned from my case and you know, make products safer, inform other people so they can intervene before me, I mean the trial . it should have stopped at the time it should have been like that as far as I'm concerned, you know, it's just that it continued to the level of that conversation that happened at the testing clinic, in fact, at my first evaluation after my reaction , then they said, oh, you.

I have to make sure this isn't Ms because it's not a disaster, so we have to make sure Astroica knows because they'll probably have to put it back on hold. That sounds nothing like Ms, nothing like Ms, so I've never met anyone who had MS with general sensory sensation. Never, yes, that's true and I kind of want to say that I don't have MS, but I think I'd rather test drive that one because your lips are numb. You don't work the way you want, it's different. I mean, I'm sure you can imagine sitting at the end of a busy day and just want to relax and unwind.

For me there is no relaxation or rest, period, um, when my children sit down. next to me, you know how to relax with mom and they're excited, right, and I can't fake pain all the time and yeah, I'm good at pretending that's what moms do, even though moms are good at faking it, but yeah, it's it's not an easy way to do it, it's not an easy way to live, thank you for sharing this, I really appreciate it and obviously any time you want to come and give us a date you are more than welcome as long as we wish you the best for the outcome of the condition and by some miracle, hopefully it can improve.

I mean, I know the prognosis isn't good right now, but hey, I hope you know that as well as you do. I'm hopeful that as we start to push this whole issue forward. in the direction of accepting that we can have more and more eyes on this and solutions to come, that's what I'm holding on to, you know, with an iron fist, actually, that's why I do it, I'm hoping that maybe Maybe they've taken a map, you know? down, so you know, it's really not that bad, there are all kinds of other therapies that people can try as well, there's a pea supplement, palm flour, lethal, long word, but I can send you a link, but it's incredibly useful for nerve pain.

I have tried all kinds of medications for nerve pain and none of them touched it well. Gaba pentin wasn't for me, it's all the standard stuff, amitri and gabapentin, the pro Gamblin, all yes, all good and all have like a laundry. list of side effects that turn you into a zombie, um, so the pea has helped reduce it a little, um, the food, those standard neurolog, those standard neurop pane meds didn't make any difference, no, not for this, no, it just made me feel like. a stoner is really what I felt like I just wasn't into it at all, but yeah, um, the food modification, I'm sure you've heard that before, was huge, so I cut out gluten, dairy, and corn, soybeans, um and a couple of other things that made me angry and that helped me significantly.

I mean even without IVIG, IVIG would do absolutely nothing for me if I didn't clean up my diet. And we Americans eat terribly anyway, so I was doing it myself. favor there but it's dramatic, it helps with my brain fog, food sensitivity issues too obviously, but the GI issues, skin issues, nerve pain and vibrations went down as I changed my diet, yeah, I mean, I mean what we need. Of course, it's a massive international investigation into this, everyone should be put together in a cohort. Best you know, we need a Manhattan Project, yeah, that would be awesome, right?

I mean, and on that, attacking this, yeah, and on that note, you know, because you know. As good as I am, there are a lot of people who aren't and aren't going to wait for someone else to figure it out right, so that's one of the things we do when reacting. 19 is a patient advocacy organization that I co-founded and we have an IRB approved study that we're running right now in partnership with the University of Maryland and we have a thousand people who have completed the study so far and it's open to another 1,500 people, so so this study raises all kinds of questions about simple 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 diagnoses and tests that people are using to pave the way to their own improvements, their own recovery and obviously the point of this is for us to figure it out ourselves, we can't wait 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 shows so far, we're about to release it in German and French next and then we'll expand it to Spanish and Italian, so why?

Won't you publish it in English right away? It should, we definitely need to find someone to publish it, of course, that's the goal, so we're going to try to be very strategic about how we publish it because it has to be published and we're being very careful and meticulous with how it's managed. the data, to ensure that this stands up to the scrutiny required to be able to publish this type of information, yes, yes, are you finding it? which particular therapies are good for everyone there are certain things that help everyone no or it's different for each individual it's different for each individual and that's why we really want to investigate what types of diagnoses people have and classify them into groups of symptoms and then , we also need to identify what their diagnoses are, what types of tests they have to see if we can link that to how people are benefiting, how some people are having, you know the catastrophic effects and see if I can start to put some of those pieces together, um, but of course, you know only one really is it's just getting started, isn't it research?

This is just yes and this is something that is totally free, so it says Grassroots as it comes, yes, we are only paying for the server that protects all the health information and maintains it, and everyone else volunteers their time for this type of investigations, so there is no Big Farmer money for this. a coincidence right, it's going to be interesting to see if they'll come together at some point, maybe 10 or 15 years from now, when they realize how much money they can make treating us, but they're not there yet, yeah Brian , thank you. I really appreciate it so much thank you and uh yeah yeah come back and update us literally anytime and I would love that and and and you know on behalf of all the people out there who recognize that they're suffering from similar things.

You know, thank you, they would appreciate this. I'm, I'm, yeah, I'm going to stop now. I'm overwhelmed with what you've told me, it's just incredible, but thank you very much, yes, any time, I appreciate it. Thank you for being such a good listener. You know there are a lot of people and you know that I have family too. All my family members have been very supportive and helpful, but I have a brother who just can't do it. uncomfortable, sure, but I think that's what sets you apart really is you, it's you who has suffered Brian, it's um, yeah, for now, thank you very much, well, thank you, okay, try to have a good night.