you mentioned the bruising and then also the spine zaps and said you were going to talk abt them more specifically, and i’m not sure you did! i’m assuming it was that you found out they were caused by various other infections?
i know i’m so sorry i totally forgot, but the bruises were caused by Babesia and the ‘zaps’ were from Lyme! i was supposed to talk about it again but you know what my memory is like😅💚
Chemo would wipe me completely out. And it was cumulative so as I kept going it would get worse. I took loads of naps. Slept under heated blankets to help the bone ache, Which is brought on by bone marrow making more blood cells. Don’t beat yourself up for being so tired or reacting the way you do to treatments. It’s just your body working. Just trust the process and you’ll be ok. ❤❤ thank you for being so open! It brings me comfort🩵
Your unique scenario with your health is actually one of the driving forces behind my current university degree, as I want to research for brain infections, diseases, and mental disorders. You being so open about your journey is also really inspiring as someone who also struggles with disability. You've got this! We believe in you! 💛💛💛
The herx reaction actually happens because the bacteria give off neurotoxins as they die and those neurotoxins circulate in the blood for a time. Very common in patients with Lyme and assorted coinfections (which Bartonella, Babesia and Erlichia all are). Rickettsia is a type of infection that has traits of both viruses and bacteria - not sure if it makes sense just to say "rickettsia" on its own. And interferon is the thing that you're feeling when you feel sort of hot and cold as your body temperature is rising in response to an infection. It's unpleasant but important.
when im depressed and i just really wanna go away, i remember that my immune system and my whole body is fighting for my life too, so i should not let it down you inspire me to take care of my health as well, i really hope you can recover for a bunch of those infections and symptons this year, evie. thank you sm for being a wonderful person in this world ❤
I have a question and this is just a curious question for you. Is this all related to your pandas pans just to curious question I’m wondering I’m curious just like everybody else.
The bravery with which you face up to all of this is awe-inspiring, Evie. Not just how you cope with all the things that are thrown at you, but also that you can calmly and openly talk to everyone about it when the vast majority of people would be locked in a darkened room and not engaging with anyone. You deserve so much to start getting some tangible improvements and all the fair-minded people who keep up to date with what you're doing will have everything crossed that something better will start to happen very soon. Take good care.
I am 63 with coronary heart disease and type 2 diabetes but watching your videos makes me feel like I just have a slight case of wind compared to what you have to endure. You are an absolute trooper, stay strong and positive and keep these great vids coming.❤👍
I was diagnosed with type 2 diabetes last year and reversed it I take 2400 mg of Ceylon cinnamon 2400 mg of Berberine and went on the carnivore diet, it also helped 2 of my friends also.
You are so strong for going through all of this, you're the strongest person ever honestly, and I hope all of these treatments and medical trips will all be 10000% worth it. Keep going, we will be with you through it all. You're amazing, sending love ❤
Not only do I love the informative videos bc I love learning, but I also just love the way you speak, it's very comforting and it feels like I'm with a friend. I've been feeling very lonely so just listening to you talk was just what I needed tonight ❤️
Ever since I saw your first video several years ago, I have been very impressed with how strong and open you have been about what you are going through. I always look forward to your videos when you are strong enough to make and post them. You have a great community that supports you.
Evie! You are a light in the world!! Sending you many MANY hugs! 🫶🏼❤️ Thank you for feeling like you can share these personal things with us.✨ Also! The winged linerrrrr in this videos!! 🥹
Thanks for the update, Evie. It always amazes me how someone who looks so good can be so poorly! You have a good insight into your condition, and explain it very clearly to us non-medics. Good luck with your future treatment. Beans!
Thank you for the update! We really appreciate you keeping us all in the loop as you're on this journey :) Hang in there; you have been unbelievably tough throughout all of this. These infections don't know who they're dealing with!!
Hi Evie! Thank you for the video update. WOW! That was a lot! You are looking better and hopefully, you will stay strong, patient, and stay in the fight. I too, and struggling with a lot of chronic things myself, being epileptic, having had Lyme Disease, and serious joint issues. I can relate to many things you have and are experiencing. Your legs will need some time, so be patient. Also, don't try to do too many things at once, ok? Pace your activities. I personally understand. I am a football (soccer) fanatic. I used to be left wing forward flying up and down the sideline crossing and shooting balls for 90 minutes. My conditions stopped me from playing seriously for decades now, but I am getting back on my feet to eventually challenge my nephews again in the backyard. You will be back tumbling again. Oh! Don't worry about crying in the streets of London. Many Chelsea fans are doing that often. 😁You are young, and you are a fighter. You will get better, got it???!!!😉👍
I hope you know how much you help people by sharing your story and knowing they are not alone. It‘s hard to keep fighting for so many years and I hope your current treatment gives you some hope and relief of your symptoms. You’ve got this.
your experience with your leg issues is very relatable, i've been going through something similar and it's so hard not only to my physical health but also to my mental health. thank you for being so open about everything, it makes me feel like i'm not alone ❤
Thank you so much for the updates on your health and experience. It's very educational. You do a great job explaining your conditions. I've been following you for 2 years now and I've seen you go through a lot. It is amazing how far you've come. Prayers that you continue to improve and live a happy life ❤
You are amazing and brave. I made the mistake of letting people hurt me, which affected how I lived. It’s much better now. It is people like yourself sharing your experiences that gives others hope to fight and endure. You rock!
Evie I've followed you for quite a few years now and I am glad that you are finnally getting answers to what is going on with your body. However I know that it is overwhelming to see all of these new diagnoses. I'm sending you much strenght so you can finnally get the life you deserve back and please keep looking for that light at the end of the dark ❤❤ I love your videos and how real you are, you have no idea how helpful it can be to people suffering something similar to see you fighting and also being vulnerable ❤ (sorry if there are any mistakes, english is not my first language)
you are so so strong for putting up with all of that (not that you really have a choice). in contrast to my depression, anxiety and ed, i cannot imagine how tired you are from all of those things when i myself feel so horrible from just few diagnoses. not to compare these very different illnesses too much, this is just a thought i had in my mind and thought to share. i wish you all the best and a lot of strength and positivity❤❤
Thank you for continuing to be you - share what you are going through, share what it means and educate therefore spreading awareness!! Sending good vibes, love and light your way
Oh hunny, my heart goes out to you. I can’t even imagine what you must be going through. I myself struggle with quiet a few chronic conditions, one is pots which I know you struggle with as well. Thank you for being so open and sharing this. You are such an inspiration, honestly. I’m sending all my love and blessings. I really hope all these changes will help to get a grasp on things. You are so very loved. Keep hanging in there love. Thank you again for being so open about these things. You will be in my thoughts and prayers.❤️
Thank you so much for keeping us up to date. I'm sorry to hear there is such a difficult road ahead. I hope for every bit of luck and relief that can come to you
Appreciate greatly you taking the time to post for the TH-cam only people ❤ hoping so badly for you that you get some relief soon with the treatments you are receiving. Love from Nova Scotia
I just found out few months ago that I have digorge syndrome. And I'm 27yo. I'm also deaf and autistic. My doctor's haven't took me seriously until I got my digorge syndrome diagnosis. Most people get the diagnosis as a baby and some even thru ultrasound in utero. But it took them27years to find mine. And it affects a lot of things im still learning. Mine affects my kidneys, my heart, my immune system I'm immunocompromised (I had sinusitis for2 mo, a week of no symptoms only to get bronchitis and only a week of no symptoms before I got two months of phemonia. So this winter and autumn I've been consistently sick!) And I feel you on it's a lot to process bc it is definitely a lot to process. But I also feel the same where it's where we can't allow ourselves to think about it 24/7 bc it would completely consume our lives.
Prayers and warm wishes. You are a remarkable young woman and I hope that your health improves and you receive all the joy, happiness, and success you deserve.
Sending Love. I find it very strange I could be so endeared to basically a stranger, you have such a strong will and I truly hope things go well for you. ❤
Thank you for sharing! Currently struggling with post Covid which caused an autoimmune flare up. I suspect I may have lyme, but no confirmed test. I’ve been on low dose naltrexone for about 3 weeks now & just finished my 4th intravenous ozone/ultraviolet treatment. I’m definitely still not 100% but have seen substantial improvement in the last month. The mental impact was much worse than I expected. When you can’t do things you were able do a short time ago, it really hits you hard. Keep your head up!
I love how you explained everything going on etc. and i love your video's. i hope you feel better soon. btw i have chronic lyme disease i had antibiotics in the begin when it was an acute infection, but it didn't work fully, so my lyme is not treatable anymore. Now i walk funny and not very good because lyme disease is famous for hurting knees, i can walk but every once in a wile my knee drops and i sit on the floor. Stay strong Evie❤ much love and have a nice day :)
Thanks for the update Evie, I was wondering how you were. Sending you soooooo much love and healing. I really do believe that some help will come from somewhere for you. Lots of love and hugs
You are a TROOPER!!! This must be very hard for you, but you are not giving up. Be proud of yourself!!! You are working very hard & it's admirable!! I love watching your content when I'm feeling low. Just know, you're spreading hope & light to this world. You deserve happiness & deserve to get better. I pray for you
I was just telling a friend about you yesterday. I was explaining how you go through so much and how huge an inspiration you are to me.🫶🏻 thanks for sharing your experiences with the world, you're so brave and you're helping so many people!!💗 we're so proud of you evie
I’m so sorry you’ve had to endure so much pain and side effects of the infusion. I hope things start to get better as soon as possible. Sending lots of love and strength for you ❤
Watching this young lady go threw all she does makes me think about there are so many people out there who have health problems way worse than i do. and to try and not to be so hard on my self all the time such a strong person 🙏❤
Oh Evie, it is so heartbreaking to hear what your body is going through. You are such an inspiration. You seem so positive even as you go through hell daily. I wish I could give you a hug. I pray these medicines knock out every one of these infections and that your legs grow stronger. ❤❤ Much love to you!
I have been following you and your story for quite some time now. Every time, I am shocked. What you have to go through is truly terrible. I am 50 years old and have three daughters, so I can empathize with how your parents must feel. I send you a lot of strength and hope for improvement for you.
Hi, I’m Kate, nice to know you Evie! I have followed your journey since the first video, I know that you’ve been through a lot of tough times, I just want to say that you are a big inspiration for the people who know you and support you, you have an army behind you, so don’t be afraid of being your true self, that’s what matters❤️ no matter what, please remember that you have a lovely family, and a very strong army behind you to hold onto you, love you Evie!
This came to mind, I’ll share on the off chance it’s helpful :) Words are so powerful, so if you find thinking if your immune system as tired feels sad, think of it as small, meaning you need to work to help it grow. It’s too small to do what it needs to do right now, but it’s strong (for its size) and willing, and so just needs to get bigger! Thank you for sharing, you’re going through so much, am sending you all my good thoughts ❤
Take your time one quote I have in mind “Even in the darkest of times there will always be light at the end of the tunnel.” To be honest I also suffer from seizures but seeing your videos motivate me so keep trying and never give up.
Thank you so much for these updates Evie, it means so much. Iv had mostly the same issues since i was a kid getting progressively worse without treatment (27 now). Id be lost without this info. Starting on treatment journey now.. Sorry i havnt showed my gratitude before its hard to get the space from symptoms to do so. If you could share the contact or name of your doctor in poland that would be massive, life saving tbh. Sending you so much love and gratitude!!!
I love your content 🥰 Most of the time when you post or some live videos you’ve done in the past I was at work. I really wanted a mandala from your online shop and I was very angry at myself because my adhd made me forgot even tho second time I had an alarm going off. Since then you improved a lot and I’m very happy to see you doing well ! One advise I can give is never ever care about how you walk because at some point everyone will do something embarrassing but hey 👋 this is life. It’s ok to be ok ! I’m happy that although you take so much medication it’s actually giving some results and that’s the most important thing ever 😅
I want to start by saying wow! You're absolutely incredible and such an inspiration and perfect example of advocating for yourself... The medical based trauma you must have from all of this must be astounding. I can't help but feel angry that noone took you so seriously in the beginning I guess this is quite a common thing to with unknown/rare conditions and cases where so much is happening and overlapping you're not sure where to begin and what to tackle first ... You have such a beautiful soul and I'm so truly happy you are heading in the right direction... Reading through through these comments they're much friendlier than insta there's some right dicks on their... I wonder if they would take the time to watch this video... Highly educational and very informative.. I thank you ❤
I'm so glad you're getting answers so that you can at least have the mental relief that theres a reason for everything you've been through and continue to experience. I wonder though,I may have missed it previously, how did you contract all these infections in the first place? I know a lot are related to tick bites and animal scratches but do you remember a particular incident or is it just assumed there must have been an incident since the infections are present? I'm so proud of you and thankful that you've continued to share this with us all because it is definitely not an easy thing to do. As someone who has dealt with both long term illness and injury I know how taxing just dealing with it is and sometimes the last thing you want to do is talk about it during any down time.
I really hope there's a day when you can go back to these videos and say you don't feel this way anymore. And I say that for anyone else who has problems causing any sort of pain or problems, I personally don't deal with any sort of issue like this but hearing you not be able to do gymnastics as much makes me wonder what it would be like if I couldn't do things I'm passionate about anymore. It's great you're getting the proper treatment now, I hope it all works out in the end
❤❤❤❤ I think there’s improvement in your tics, as you were able to speak for a good bit without tics, you are a very articulate young lady and so glad you are undertaking educating people, wishing u a full recovery from bartonella ❤❤❤❤
Is there anything we can do to help? Obviously we’re all here to support you, we’re all rooting for you and we love the amount of education and awareness you’re providing online. But if there’s anything we can physically do, like donating more for example, please let us know! I’d love to help any way I can, you deserve the world, and I know I speak for plenty of other people who follow you when I say we just want you to have a good quality of life.
You have a lot going on and yet you’re still standing and breathing did I mention that I love your channel so much and if I can contribute to any of your infusions or your other things, believe me, I would but just know that your channel is really good and I love it❤
I absolutely love your videos you are so awesome 🙌🏻 ❤❤❤❤❤ I really feel for you it’s really sad that you have been through the mill but at least you’re getting better ❤️🩹
❤❤evie you’re so amazing thanks for hearting my comment you’re truly inspirational and your personality is wonderful! Your mom is also absolutely wonderful as well beautiful mom and she raised a beautiful daughter 🥰🥰
How can someone have so many so rare infections? I mean Lyme disease is already quite rare right, but together with all the other infections only doctors ever heard about is crazy... Stay strong! ❤❤
Hey! Thanks for being so open to teaching others and bringing awareness. I'm wondering if you know the name of the blood panel your doctor did to test you for the infections? I am trying to get my doctor to test me but it has been a giant fight and I'm getting so so tired. It would be nice to know so I can just go to him and say exactly what I want or go to the US (I'm Canadian) and pay out of pocket to get it done. I'm just so tired of feeling ill and having nobody understand 😭
Hi Evie, I am so glad you are in the race to get better and better. Sorry for the question, but I got confused with your lyme diagnosis, does it mean you don't have panda's? I mean, is it lyme instead of panda's, or both??
My wife sorts her medication into pill pots on a Sunday evening. That way she doesn't have to find the motivation to sort them daily. This works so much better.
This is really long, I’m not sure how comfortable you feel answering this, and I totally understand if you don’t. But I wanted to ask what were some of your very first symptoms that led to eventually getting SOT? What was the symptom(s) that made you realize like “hey, this isn’t typical. What’s causing it and how do we find out?” I’m chronically ill with a few conditions and I just turned 21, meaning I aged out of the chronic pain clinic I was going to at a children’s hospital. I haven’t found a new CP specialist yet. But lately I’ve been feeling a different kind of pain, I’m weaker than I was before, and I’m having to use my wheelchair more and more. If I’m going to be out for more than 2 hours, I’m most likely in my chair. And that’s after buying an electric chair because a manual just wasn’t possible anymore. So I’m wondering what was the thing that made you decide “I need to go see a doctor.” Searches online haven’t really helped me figure this out, and I thought (if you’re ok with answering this) maybe an actual patient’s response would make more sense than medical jargon. Thank you in advance for potentially reading this whole thing. I hope you start to see better reactions to your treatments and that you can get to a place where you’re not struggling like this. Much love from FL🩵🤍
Hi Evie. First off, I just wanted to say that I’ve been following your journey for years and I’m always inspired by your strength. I’ve been battling health issues daily myself. I did have a question. Since getting these results, do you guys know if you got all these infections from a tick alone or did the tick give you one or two infections and due to your declining immune function, you eventually developed more infections over the years?
It's estimated that 50% of ticks carry a disease and you can get these I factions nor just from ticks . Flies ,nurseries ECT . I wish I would've known all of this years ago
From one chronically ill human to another, I just want to give you a big hug. But as someone who hugs physcially hurt, ill send you well wishes instead lol. I understand youre self concious of how youre walking, but just keep in mind that everyone is so in their own head, no one will think twice about how it looks. Thats something thats helped me, I used to be so embarassed asking for help at grocery stores, especially loading things that other 20yr olds could. I had a younger couple one time scoff, and say alloud "how lazy can you be that you need help loading groceries". I went home and cried, my dad was so mad at them. I dont rememeber where or who said it, but explained how if you see someone out who looks different, odd, or whatever have you, how often do you think of it? For almost everyone, its only that 1 time or day. We are so in our own heads, and so is everyone else, that we really shouldnt limit ourselves worried about what others will think. Im probably doing a horrible job cobnveying that lol but trust me, even if you look "odd", dont let it stop you from going out and doing things that will ultimately bring you happiness. My mother has myasthenia gravis, an autoimmune disoarder that attacks the muscles. Every year or so, for anywhere from 1-6 months, one of her eyes half closes. Its accompanied by wobby gait, coordination loss etc. She worried everyone would think she was a lush, because it did make her look almost drunk. Well, now shes got such a good spirit about it, she tapes her eye open and goes about her day! That has also further given me confidence not to care what others think. I know it is so hard in your teens and 20s though, when you see all your "normal" peers. One things for sure though, you are a warrior! Chronically ill is not for the weak or faint of heart, and even though it takes from us, it gives us the biggest hearts, more empathy, more understanding, and I think thats the beauty in the darkness of it all. Wishing you nothing but success and healthier days ahead ms Evie, youve got a long list in that book, dont let it defeat you. 1 at a time, and the time will pass no matter what, so even when they say it might take years, its worth it! ❤❤❤
Hey Evie, I'm amazed every single time I see you trying to be positive despite it all. You are so incredibly strong, and I hope you get better soon. What I wanted to ask is, have you tried medical marijuana? I don't know if it's a thing in the UK, but maybe it helps with pain and moods? I also heard it was good for tics and seizures and anxiety (I don't know if that is true; I don't want to spread false information). I know it's not for everyone, and a lot of people have strong opinions on it, but a friend of mine was severely ill with many different rare aggressive things, and he said taking THC really helps him a lot with pain and calming down, he sadly passed away in 2019 due to his severe illnesses. I just wanted to know if that was maybe something worth trying or if you have tried already OR maybe you dont even want to or like it, which is totally valid as well. Lots of love from Germany
Evie I just want to hug you and say that you should never lose your faith and hope❤ Things should get better eventually! I don't know if I understand it correct. But do you get all these infections because of your immune system? Or it all has been happening to your health, all the issues've been caused by some infection that you got when was a child? Like a tick bite could've caused Lime decease? Sorry if I'm not getting it right xx❤❤
Hi Evie Meg it sound like your very much on top of this and have a very good understanding of the whole situation . I was wondering if have tried strength training with weights for your legs and arms, maybe ankle weights, leg lifts, and sqwot. I think it would really help if u are able to do it. I wish u nothing but the best.
Apart from all the diagnoses you have had, i see a woman that is much brighter and 'controlled' than when i first saw you. A huge improvement that you really, really(!) can be enormously proud of. Is the handful of pills really your daily dose?
you mentioned the bruising and then also the spine zaps and said you were going to talk abt them more specifically, and i’m not sure you did! i’m assuming it was that you found out they were caused by various other infections?
i know i’m so sorry i totally forgot, but the bruises were caused by Babesia and the ‘zaps’ were from Lyme! i was supposed to talk about it again but you know what my memory is like😅💚
Not sure if this helps but it may be worth giving them a phone call, UK Bartonella: diagnostic and reference services:
www.gov.uk/guidance/bartonella
Chemo would wipe me completely out. And it was cumulative so as I kept going it would get worse. I took loads of naps. Slept under heated blankets to help the bone ache, Which is brought on by bone marrow making more blood cells. Don’t beat yourself up for being so tired or reacting the way you do to treatments. It’s just your body working. Just trust the process and you’ll be ok. ❤❤ thank you for being so open! It brings me comfort🩵
Your unique scenario with your health is actually one of the driving forces behind my current university degree, as I want to research for brain infections, diseases, and mental disorders. You being so open about your journey is also really inspiring as someone who also struggles with disability. You've got this! We believe in you! 💛💛💛
The world needs more people like you. ❤️
The herx reaction actually happens because the bacteria give off neurotoxins as they die and those neurotoxins circulate in the blood for a time. Very common in patients with Lyme and assorted coinfections (which Bartonella, Babesia and Erlichia all are). Rickettsia is a type of infection that has traits of both viruses and bacteria - not sure if it makes sense just to say "rickettsia" on its own. And interferon is the thing that you're feeling when you feel sort of hot and cold as your body temperature is rising in response to an infection. It's unpleasant but important.
when im depressed and i just really wanna go away, i remember that my immune system and my whole body is fighting for my life too, so i should not let it down
you inspire me to take care of my health as well, i really hope you can recover for a bunch of those infections and symptons this year, evie. thank you sm for being a wonderful person in this world ❤
I needed to hear this, even though I know I wasn't the target audience. Thank you :)
@@echouv661 💓
i love that we have such a great role model and advocate in the ticcing community icl
YES. I have tourette's and she has educated so many people for us!!
I have a question and this is just a curious question for you. Is this all related to your pandas pans just to curious question I’m wondering I’m curious just like everybody else.
@@RippingStars mhm! i have PANS!
@@dinahakim7114 mine is both ii have pans and posobly tourrets just waiting for the one year mark
The bravery with which you face up to all of this is awe-inspiring, Evie. Not just how you cope with all the things that are thrown at you, but also that you can calmly and openly talk to everyone about it when the vast majority of people would be locked in a darkened room and not engaging with anyone.
You deserve so much to start getting some tangible improvements and all the fair-minded people who keep up to date with what you're doing will have everything crossed that something better will start to happen very soon. Take good care.
I am 63 with coronary heart disease and type 2 diabetes but watching your videos makes me feel like I just have a slight case of wind compared to what you have to endure. You are an absolute trooper, stay strong and positive and keep these great vids coming.❤👍
Don't lie,heart issues are much more paramount than what this liar is claiming to have.
@@solidsnakesimulation666 what is wrong with you?
I was diagnosed with type 2 diabetes last year and reversed it I take 2400 mg of Ceylon cinnamon 2400 mg of Berberine and went on the carnivore diet, it also helped 2 of my friends also.
You are so strong for going through all of this, you're the strongest person ever honestly, and I hope all of these treatments and medical trips will all be 10000% worth it. Keep going, we will be with you through it all. You're amazing, sending love ❤
Not only do I love the informative videos bc I love learning, but I also just love the way you speak, it's very comforting and it feels like I'm with a friend. I've been feeling very lonely so just listening to you talk was just what I needed tonight ❤️
Ever since I saw your first video several years ago, I have been very impressed with how strong and open you have been about what you are going through. I always look forward to your videos when you are strong enough to make and post them. You have a great community that supports you.
Evie! You are a light in the world!! Sending you many MANY hugs! 🫶🏼❤️ Thank you for feeling like you can share these personal things with us.✨ Also! The winged linerrrrr in this videos!! 🥹
Been having such a tough day!! Seeing the notification you posted really made me smile. ❤
Thanks for the update, Evie. It always amazes me how someone who looks so good can be so poorly! You have a good insight into your condition, and explain it very clearly to us non-medics. Good luck with your future treatment. Beans!
Thank you for the update! We really appreciate you keeping us all in the loop as you're on this journey :) Hang in there; you have been unbelievably tough throughout all of this. These infections don't know who they're dealing with!!
Hi Evie! Thank you for the video update. WOW! That was a lot! You are looking better and hopefully, you will stay strong, patient, and stay in the fight. I too, and struggling with a lot of chronic things myself, being epileptic, having had Lyme Disease, and serious joint issues. I can relate to many things you have and are experiencing. Your legs will need some time, so be patient. Also, don't try to do too many things at once, ok? Pace your activities. I personally understand. I am a football (soccer) fanatic. I used to be left wing forward flying up and down the sideline crossing and shooting balls for 90 minutes. My conditions stopped me from playing seriously for decades now, but I am getting back on my feet to eventually challenge my nephews again in the backyard. You will be back tumbling again. Oh! Don't worry about crying in the streets of London. Many Chelsea fans are doing that often. 😁You are young, and you are a fighter. You will get better, got it???!!!😉👍
What a lovely human being you are. I hope people appreciate your intellect and courage.
I hope you know how much you help people by sharing your story and knowing they are not alone. It‘s hard to keep fighting for so many years and I hope your current treatment gives you some hope and relief of your symptoms. You’ve got this.
You are so strong Evie! ❤
your experience with your leg issues is very relatable, i've been going through something similar and it's so hard not only to my physical health but also to my mental health. thank you for being so open about everything, it makes me feel like i'm not alone ❤
Thank you so much for the updates on your health and experience. It's very educational. You do a great job explaining your conditions. I've been following you for 2 years now and I've seen you go through a lot. It is amazing how far you've come. Prayers that you continue to improve and live a happy life ❤
You are amazing and brave. I made the mistake of letting people hurt me, which affected how I lived. It’s much better now. It is people like yourself sharing your experiences that gives others hope to fight and endure. You rock!
Evie I've followed you for quite a few years now and I am glad that you are finnally getting answers to what is going on with your body. However I know that it is overwhelming to see all of these new diagnoses. I'm sending you much strenght so you can finnally get the life you deserve back and please keep looking for that light at the end of the dark ❤❤ I love your videos and how real you are, you have no idea how helpful it can be to people suffering something similar to see you fighting and also being vulnerable ❤ (sorry if there are any mistakes, english is not my first language)
you are so so strong for putting up with all of that (not that you really have a choice). in contrast to my depression, anxiety and ed, i cannot imagine how tired you are from all of those things when i myself feel so horrible from just few diagnoses. not to compare these very different illnesses too much, this is just a thought i had in my mind and thought to share. i wish you all the best and a lot of strength and positivity❤❤
Thank you for continuing to be you - share what you are going through, share what it means and educate therefore spreading awareness!! Sending good vibes, love and light your way
Oh hunny, my heart goes out to you. I can’t even imagine what you must be going through. I myself struggle with quiet a few chronic conditions, one is pots which I know you struggle with as well. Thank you for being so open and sharing this. You are such an inspiration, honestly. I’m sending all my love and blessings. I really hope all these changes will help to get a grasp on things. You are so very loved. Keep hanging in there love. Thank you again for being so open about these things. You will be in my thoughts and prayers.❤️
Thank you so much for keeping us up to date. I'm sorry to hear there is such a difficult road ahead. I hope for every bit of luck and relief that can come to you
you have a way of saying im strong with out saying it❤ your amazing and i continue to follow you and enjoy learning from you
I’m so proud of your progress Evie! You’ve got this no matter what! Look how far you’ve come already!❤❤
Appreciate greatly you taking the time to post for the TH-cam only people ❤ hoping so badly for you that you get some relief soon with the treatments you are receiving. Love from Nova Scotia
I just found out few months ago that I have digorge syndrome. And I'm 27yo. I'm also deaf and autistic. My doctor's haven't took me seriously until I got my digorge syndrome diagnosis. Most people get the diagnosis as a baby and some even thru ultrasound in utero. But it took them27years to find mine. And it affects a lot of things im still learning. Mine affects my kidneys, my heart, my immune system I'm immunocompromised (I had sinusitis for2 mo, a week of no symptoms only to get bronchitis and only a week of no symptoms before I got two months of phemonia. So this winter and autumn I've been consistently sick!) And I feel you on it's a lot to process bc it is definitely a lot to process. But I also feel the same where it's where we can't allow ourselves to think about it 24/7 bc it would completely consume our lives.
Prayers and warm wishes. You are a remarkable young woman and I hope that your health improves and you receive all the joy, happiness, and success you deserve.
Sending Love.
I find it very strange I could be so endeared to basically a stranger, you have such a strong will and I truly hope things go well for you.
❤
you’re so incredibly strong evie! i don’t know how you can do this with a smile on your face still! you’re superhuman. love you so much evie ❤❤❤
Thank you for sharing!
Currently struggling with post Covid which caused an autoimmune flare up. I suspect I may have lyme, but no confirmed test.
I’ve been on low dose naltrexone for about 3 weeks now & just finished my 4th intravenous ozone/ultraviolet treatment. I’m definitely still not 100% but have seen substantial improvement in the last month.
The mental impact was much worse than I expected. When you can’t do things you were able do a short time ago, it really hits you hard.
Keep your head up!
I love how you explained everything going on etc. and i love your video's. i hope you feel better soon. btw i have chronic lyme disease i had antibiotics in the begin when it was an acute infection, but it didn't work fully, so my lyme is not treatable anymore. Now i walk funny and not very good because lyme disease is famous for hurting knees, i can walk but every once in a wile my knee drops and i sit on the floor. Stay strong Evie❤ much love and have a nice day :)
Thanks for the update Evie, I was wondering how you were. Sending you soooooo much love and healing. I really do believe that some help will come from somewhere for you. Lots of love and hugs
You are a TROOPER!!! This must be very hard for you, but you are not giving up. Be proud of yourself!!! You are working very hard & it's admirable!! I love watching your content when I'm feeling low. Just know, you're spreading hope & light to this world. You deserve happiness & deserve to get better. I pray for you
I was just telling a friend about you yesterday. I was explaining how you go through so much and how huge an inspiration you are to me.🫶🏻 thanks for sharing your experiences with the world, you're so brave and you're helping so many people!!💗 we're so proud of you evie
I’m so sorry you’ve had to endure so much pain and side effects of the infusion. I hope things start to get better as soon as possible. Sending lots of love and strength for you ❤
Watching this young lady go threw all she does makes me think about there are so many people out there who have health problems way worse than i do. and to try and not to be so hard on my self all the time such a strong person 🙏❤
Oh Evie, it is so heartbreaking to hear what your body is going through. You are such an inspiration. You seem so positive even as you go through hell daily. I wish I could give you a hug. I pray these medicines knock out every one of these infections and that your legs grow stronger. ❤❤ Much love to you!
I have been following you and your story for quite some time now. Every time, I am shocked. What you have to go through is truly terrible. I am 50 years old and have three daughters, so I can empathize with how your parents must feel. I send you a lot of strength and hope for improvement for you.
Thx for the update Evie. Your openness and bravery inspires others to open up about their own issues. Hoping for the best for you. 🙏
Hi, I’m Kate, nice to know you Evie! I have followed your journey since the first video, I know that you’ve been through a lot of tough times, I just want to say that you are a big inspiration for the people who know you and support you, you have an army behind you, so don’t be afraid of being your true self, that’s what matters❤️ no matter what, please remember that you have a lovely family, and a very strong army behind you to hold onto you, love you Evie!
This came to mind, I’ll share on the off chance it’s helpful :) Words are so powerful, so if you find thinking if your immune system as tired feels sad, think of it as small, meaning you need to work to help it grow. It’s too small to do what it needs to do right now, but it’s strong (for its size) and willing, and so just needs to get bigger!
Thank you for sharing, you’re going through so much, am sending you all my good thoughts ❤
So nice to see you are doing well, thank you for sharing your honest vids. Lot's of Love!!
Take your time one quote I have in mind “Even in the darkest of times there will always be light at the end of the tunnel.” To be honest I also suffer from seizures but seeing your videos motivate me so keep trying and never give up.
Thank you so much for these updates Evie, it means so much.
Iv had mostly the same issues since i was a kid getting progressively worse without treatment (27 now). Id be lost without this info. Starting on treatment journey now..
Sorry i havnt showed my gratitude before its hard to get the space from symptoms to do so.
If you could share the contact or name of your doctor in poland that would be massive, life saving tbh.
Sending you so much love and gratitude!!!
Hey, I am on that same road. And was wondering which clinic you visited as well?
I love your content 🥰
Most of the time when you post or some live videos you’ve done in the past I was at work.
I really wanted a mandala from your online shop and I was very angry at myself because my adhd made me forgot even tho second time I had an alarm going off.
Since then you improved a lot and I’m very happy to see you doing well ! One advise I can give is never ever care about how you walk because at some point everyone will do something embarrassing but hey 👋 this is life. It’s ok to be ok !
I’m happy that although you take so much medication it’s actually giving some results and that’s the most important thing ever 😅
thank you❤i have another art sale coming up x
I want to start by saying wow! You're absolutely incredible and such an inspiration and perfect example of advocating for yourself... The medical based trauma you must have from all of this must be astounding. I can't help but feel angry that noone took you so seriously in the beginning I guess this is quite a common thing to with unknown/rare conditions and cases where so much is happening and overlapping you're not sure where to begin and what to tackle first
... You have such a beautiful soul and I'm so truly happy you are heading in the right direction... Reading through through these comments they're much friendlier than insta there's some right dicks on their... I wonder if they would take the time to watch this video... Highly educational and very informative..
I thank you ❤
IM SO PROUD OF YOU EVIE!!!! You are amazing ❤💚🐼 ✨how far you’ve come and you were so brave to do the infusion✨ 🐼
I love the eye makeup its pretty🥰
you seem like a lovely person, wishing you all the best
Wow! You have been through so much, and are such a fighter! Thank you for sharing your journey and educating us on your health.
I hope you find the answers you’re searching for!! Keep staying strong and positive ❤ thank you for sharing your story!
You are a very strong girl, never forget that there are 650 thousand people behind you who believe in you, I love you ❤❤❤
I love you so much and I’m glad you know what’s going on or what you have your so brave and I’m proud of you xx stay strong princess xxx
I'm so glad you're getting answers so that you can at least have the mental relief that theres a reason for everything you've been through and continue to experience. I wonder though,I may have missed it previously, how did you contract all these infections in the first place? I know a lot are related to tick bites and animal scratches but do you remember a particular incident or is it just assumed there must have been an incident since the infections are present?
I'm so proud of you and thankful that you've continued to share this with us all because it is definitely not an easy thing to do. As someone who has dealt with both long term illness and injury I know how taxing just dealing with it is and sometimes the last thing you want to do is talk about it during any down time.
I really hope there's a day when you can go back to these videos and say you don't feel this way anymore. And I say that for anyone else who has problems causing any sort of pain or problems, I personally don't deal with any sort of issue like this but hearing you not be able to do gymnastics as much makes me wonder what it would be like if I couldn't do things I'm passionate about anymore.
It's great you're getting the proper treatment now, I hope it all works out in the end
I hope your treatment continues to go well and your legs improve soon!
You're Very Strong Evie You Got This 💙 Girl 🤗
❤❤❤❤ I think there’s improvement in your tics, as you were able to speak for a good bit without tics, you are a very articulate young lady and so glad you are undertaking educating people, wishing u a full recovery from bartonella ❤❤❤❤
Evie is the best in the world.🐼
I love your educational videos, wait for this video, we love you.😊❤❤🎉😂
wow I didn't realize how many subscribers you have! good work!
I hope the treatments end up helping you feel better soon 💞
I think you’re very brave, inspirational , and a lovely person. Keep up your interesting vlogs ⭐️
stay strong girl,we all love you
I'm sorry that it's so tough but I'm glad you're going in the right direction ❤
Wishing you the best! Thank you for being so open
Is there anything we can do to help? Obviously we’re all here to support you, we’re all rooting for you and we love the amount of education and awareness you’re providing online. But if there’s anything we can physically do, like donating more for example, please let us know! I’d love to help any way I can, you deserve the world, and I know I speak for plenty of other people who follow you when I say we just want you to have a good quality of life.
You have a lot going on and yet you’re still standing and breathing did I mention that I love your channel so much and if I can contribute to any of your infusions or your other things, believe me, I would but just know that your channel is really good and I love it❤
Evie ..... wishing you all the best with your new treatments .. love you dude ... youre a very special human xx
miss you keith❤️❤️
aww I miss you too ... havent seen you in an age @@thistrippyhippie
You are amazing. Can you do a video about how your nails are done with your tics?
But how did you catch all of these infections😢😢
You are strong, we all believe in you❤
You’re totally Awesome and Amazing!
I absolutely love your videos you are so awesome 🙌🏻 ❤❤❤❤❤ I really feel for you it’s really sad that you have been through the mill but at least you’re getting better ❤️🩹
I work as a vet tech and a lot of these things you are positive for we see a lot in animals. I hope you start feeling better. Tick are disgusting!
❤❤evie you’re so amazing thanks for hearting my comment you’re truly inspirational and your personality is wonderful! Your mom is also absolutely wonderful as well beautiful mom and she raised a beautiful daughter 🥰🥰
How can someone have so many so rare infections? I mean Lyme disease is already quite rare right, but together with all the other infections only doctors ever heard about is crazy... Stay strong! ❤❤
Have you tried LDI? Low Dose Immunotherapy? Apparently many with Lymes and Pans are getting good results with that and it's a fairly gentle process
You're such a brave young woman, Evie.
Stay Strong Evie!❤❤
Hey! Thanks for being so open to teaching others and bringing awareness. I'm wondering if you know the name of the blood panel your doctor did to test you for the infections? I am trying to get my doctor to test me but it has been a giant fight and I'm getting so so tired. It would be nice to know so I can just go to him and say exactly what I want or go to the US (I'm Canadian) and pay out of pocket to get it done. I'm just so tired of feeling ill and having nobody understand 😭
Your so sweet and so so sos so strongest girl i ever seen i hope you feel so better ☺️
Hi Evie, I am so glad you are in the race to get better and better. Sorry for the question, but I got confused with your lyme diagnosis, does it mean you don't have panda's? I mean, is it lyme instead of panda's, or both??
Also, I've always loved your positive vibes and your style ❤✌️
My wife sorts her medication into pill pots on a Sunday evening. That way she doesn't have to find the motivation to sort them daily. This works so much better.
my mum does this for me too❤️
This is really long, I’m not sure how comfortable you feel answering this, and I totally understand if you don’t. But I wanted to ask what were some of your very first symptoms that led to eventually getting SOT? What was the symptom(s) that made you realize like “hey, this isn’t typical. What’s causing it and how do we find out?”
I’m chronically ill with a few conditions and I just turned 21, meaning I aged out of the chronic pain clinic I was going to at a children’s hospital. I haven’t found a new CP specialist yet. But lately I’ve been feeling a different kind of pain, I’m weaker than I was before, and I’m having to use my wheelchair more and more. If I’m going to be out for more than 2 hours, I’m most likely in my chair. And that’s after buying an electric chair because a manual just wasn’t possible anymore.
So I’m wondering what was the thing that made you decide “I need to go see a doctor.” Searches online haven’t really helped me figure this out, and I thought (if you’re ok with answering this) maybe an actual patient’s response would make more sense than medical jargon.
Thank you in advance for potentially reading this whole thing. I hope you start to see better reactions to your treatments and that you can get to a place where you’re not struggling like this. Much love from FL🩵🤍
Hi Evie. First off, I just wanted to say that I’ve been following your journey for years and I’m always inspired by your strength. I’ve been battling health issues daily myself. I did have a question. Since getting these results, do you guys know if you got all these infections from a tick alone or did the tick give you one or two infections and due to your declining immune function, you eventually developed more infections over the years?
I just can't understand HOW that happens, so many infections...
if someone has one, they’re more likely to have another…
It's estimated that 50% of ticks carry a disease and you can get these I factions nor just from ticks . Flies ,nurseries ECT . I wish I would've known all of this years ago
@@thistrippyhippie :(
Immunodeficiency
From one chronically ill human to another, I just want to give you a big hug. But as someone who hugs physcially hurt, ill send you well wishes instead lol. I understand youre self concious of how youre walking, but just keep in mind that everyone is so in their own head, no one will think twice about how it looks. Thats something thats helped me, I used to be so embarassed asking for help at grocery stores, especially loading things that other 20yr olds could. I had a younger couple one time scoff, and say alloud "how lazy can you be that you need help loading groceries". I went home and cried, my dad was so mad at them. I dont rememeber where or who said it, but explained how if you see someone out who looks different, odd, or whatever have you, how often do you think of it? For almost everyone, its only that 1 time or day. We are so in our own heads, and so is everyone else, that we really shouldnt limit ourselves worried about what others will think.
Im probably doing a horrible job cobnveying that lol but trust me, even if you look "odd", dont let it stop you from going out and doing things that will ultimately bring you happiness.
My mother has myasthenia gravis, an autoimmune disoarder that attacks the muscles. Every year or so, for anywhere from 1-6 months, one of her eyes half closes. Its accompanied by wobby gait, coordination loss etc. She worried everyone would think she was a lush, because it did make her look almost drunk. Well, now shes got such a good spirit about it, she tapes her eye open and goes about her day! That has also further given me confidence not to care what others think. I know it is so hard in your teens and 20s though, when you see all your "normal" peers.
One things for sure though, you are a warrior! Chronically ill is not for the weak or faint of heart, and even though it takes from us, it gives us the biggest hearts, more empathy, more understanding, and I think thats the beauty in the darkness of it all.
Wishing you nothing but success and healthier days ahead ms Evie, youve got a long list in that book, dont let it defeat you. 1 at a time, and the time will pass no matter what, so even when they say it might take years, its worth it! ❤❤❤
Hey Evie, I'm amazed every single time I see you trying to be positive despite it all. You are so incredibly strong, and I hope you get better soon. What I wanted to ask is, have you tried medical marijuana? I don't know if it's a thing in the UK, but maybe it helps with pain and moods? I also heard it was good for tics and seizures and anxiety (I don't know if that is true; I don't want to spread false information).
I know it's not for everyone, and a lot of people have strong opinions on it, but a friend of mine was severely ill with many different rare aggressive things, and he said taking THC really helps him a lot with pain and calming down, he sadly passed away in 2019 due to his severe illnesses. I just wanted to know if that was maybe something worth trying or if you have tried already OR maybe you dont even want to or like it, which is totally valid as well. Lots of love from Germany
Evie I just want to hug you and say that you should never lose your faith and hope❤ Things should get better eventually!
I don't know if I understand it correct. But do you get all these infections because of your immune system? Or it all has been happening to your health, all the issues've been caused by some infection that you got when was a child? Like a tick bite could've caused Lime decease? Sorry if I'm not getting it right
xx❤❤
Wow well done we are all here for you if u need love you
You are a beautiful person evie always wish the best for you sweetheart
Prayers
Hi Evie Meg it sound like your very much on top of this and have a very good understanding of the whole situation . I was wondering if have tried strength training with weights for your legs and arms, maybe ankle weights, leg lifts, and sqwot. I think it would really help if u are able to do it. I wish u nothing but the best.
All my best to you....stay strong....
Apart from all the diagnoses you have had, i see a woman that is much brighter and 'controlled' than when i first saw you. A huge improvement that you really, really(!) can be enormously proud of.
Is the handful of pills really your daily dose?
Where will you have to go to get IVIG? Just found your channel excellent information explained so beautifully thank you i hope you get better soon.