Poland Vlog 2 || The Treatment Begins....
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- Опубликовано: 15 сен 2024
- medical treatment & blood tests at 03:25 so skip to 05:38 if you don't want to see anything medical, or to 04:30 if you're okay with medical stuff but don't wanna see blood 🩸
hello everyoneee!♥️ pretty big and exciting video today, I can't even tell you how nervous I was for this trip. the first time for anything is always scary but something medical is a whole other level. having my 2 special supporters (3 including mum) helped me massively. i'm very lucky🥰
FAQ's:
🦠 “what was the infusion for and why did you have it?" the infusion I had is called SOT. (Supportive Oligonucleotide Technique) this specific SOT was for Bartonella vinsonii (more info below) which is a infection I have which can trigger PANS/encephalitis. the plan was for me to have IVIG, which is a major and very promising treatment to help PANS/encephalitis. but when I was in Poland last year and they took a huge amount of blood, they found multiple infections in my body. these have to be treated first or else IVIG won't have any positive effects. so, they planned for me to have SOT! I may need multiple rounds as it's unlikely one SOT will totally kill off the Bartonella but right now I don't know.
🦠"what is Bartonella?" Bartonella is a co-infection to Lyme disease. it lives in the lining of my blood vessels and red blood cells. The severity varies between person to person, some may have a couple symptoms while another person could be totaly debilitated by Bartonella. Bart is a bacteria that can cause symptoms including; headaches, insomina, hallucinations, anxiety, depression, 'scratch like' marks on the skin (main sign of Bartonella) bone pain especially in the shins, anger outbursts/rage, fatigue, seizures, POTS, brain fog, dissociation, pain in the soles of feet (another main sign of Bart) swollen lymph nodes and much more. there are multiple strains of Bart but the one I have is called Bartonella vinsonii. More info here: projectlyme.or...
🦠"why could you not just have the infusion in the UK? Don't they have free health care?" Yes, in the UK we do have free health care. for certain conditions. the UK is quite far behind on research regarding Lyme disease and other infections. if you google Bartonella, you'll see there is no NHS page for it. it is still under researched and not often diagnosed, but many of us with PANS also have co-infections which are often the underlying cause. in the UK, they do not offer me SOT for the illness I have. in fact, they don't offer me any treatment on the NHS for my PANS/encephalitis, ntohing at all. I had to go private just for antibiotics and pay for everything myself. One round of SOT cost me over £2,000, and the 16 tubes of blood I had taken in this video was £1,745. because what they are looking for in my blood is so specific and detailed. believe me, if I could do all this in the UK i obviously would! but that's not even an option. IVIG will also be in Poland as they won't give it to me in the UK :(
-🦠"what does the SOT do?" SOT is also a treatment for cancer. in my case of course it is treating lyme disease co-infections. SOT was actually made from my own blood, a sample of my blood was sent off to Greece where they made the SOT. so SOT is custom made for the person receiving it, and will only work for the person it was made for.
"SOT works by creating a shutoff “key” that fits into a chosen “lock” portion of a pathogen or cancer cell. The “lock” is a specific section of DNA that normally controls an important function of the cancer cell or pathogen.
The “key” binds to the “lock” and blocks the function and the replication of the cell - thereby killing the cancer cell or pathogen, and preventing its replication." Quote taken from
www.drrachelwe... Essentially, SOT is going to stop the Bartonella from replicating in my body.
hopefully that answers the basic questions!♥️I know it's all very techinal, took me a long time to understand it all and if I'm honest I'm still learning. I also have another co-infection called Babesia, and it is likely I will need a SOT specifically for that too, but it’s not certain and at the moment I'm focussing on the here & now.
thank you for coming along with me and giving me the space to document this next chapter🥰♥️
links:
⭐️insta: www.instagram....
⭐️my treatment fundraiser: www.gofundme.c...
⭐️my shop: www.thistrippy...
⭐️tiktok: www.tiktok.com/@thistrippyhippie
I just LOVE AND ADORE the love Max and Harvey have for Evie! 😭💕 Literally the best Trio ever!
As someone that has dealt with both long term illnesses that took way too long to diagnose and long term injuries which limited my mobility for a epriod of time, I cant image the absolutely relief you must be feeling irght now. Feeling like you finally have a diagnosis which explains everything and the hope that a treatment plan will make any kind of difference no matter how small would be like taking the weight of the world off my shoulders. Just remember on your hardest days where you wonder why on earth you're going through this - 'it was worth the chance and I wouldn't know without trying'. For everyday you struggle its not one more day of struggling, its one less day until a good day.
The nurse was so sweet!! And having the boys and your mum must have helped too! Wishing you all the best ❤️
Max and Harvey always know what to say to make you laugh and feel better. I’m so glad they were able to be there with you for support
You look so, so pretty~. 🥰 Could not be happier for you and could not be prouder of you. ❤ Was also so delightful to see Max and Harvey there. True friendship right there. 😊 Onwards and upwards from here! Much love to you and yours, as always, Evie~. 💜💜💜
Glad to hear it all went well! Was also a pleasure me and my team helping you at the airport, sorry I was so awkward 😅
im really glad you are able to go to poland for treatment and i hope that you meet your treatment fund goals.. you deserve to get treatment so that your quality of life is better and you have immense love and support from not only your family but from us too ♥ edit: love your outfits and makeup looks ! happy that Max and Harvey were there to comfort you
I'm so glad to see you're getting the treatment you need I know getting money for it, waiting lists, etc can be such a pain, but I'm genuinely glad to see you're getting treatments/testing/etc. that you need, Eevie. ❤
Edited for spelling errors.
Despite your (understandable) anxiety, you coped with all those needles and blood samples with flying colours! Better than I would have! Hope the infusion does its job and kicks in soon. Keep us posted.
i was recently in the hospital for an awful infection i had, IV antibiotics for 5 days and got my blood taken (about 8 tubes) every day. I'm so inspired and proud to see the way you handled this, because at the point I was at, when I got poked I cried. My arms were so incredibly bruised and sore, and seeing this just gave me a little bit of hope and motivation to not let my thoughts bully me anymore. Much love, Evie
Greeting from Poland :) I hope you get much better after treatment
Pozdrawiamy! 😊
I love that you keep us updated❤️
I love your vlogs!! As someone who lives with several chronic illnesses it’s always so comforting to remember I’m not alone w health battles and my day to day life just taking care of myself. Thank you for sharing! All the love! ❤❤
Evie, you're my safe person ❤ I watched this video to feel relaxed and it made me happy cry😢. I love you so much and really wish you're feeling better now💗
I just found your channel and I hope you will get the treatment you need and everything goes well! I’ll be sticking around ❤❤❤
I am so glad you have friends that will drop everything and meet you there. That shows how totally awesome you are. That is so great you got your treatment. Keep you your good mind set as you continue to get your treatment. May god bless you and your family and friends.
i dont have nearly as many health struggles as you, but i still have some and seeing your journey and how strong you are really helps me with my struggles. you show so many ppl that it's 100% possible to get through and stay positive during rough times like this. i hope these treatments are effective and you start doing better, you deserve it! thanks for everything you do, evie
I can't express enough how happy I am for you to start a new proper treatment. God bless you🙏 Let it help you to become a healthy Evie❤
10:14 Yes you look awesome with this look!
Happy to hear it went well and that you enjoyed the flight. I love flying!
you absolutely smashed it just like last time. Having max and Harvey there as well must of been really comforting to give you something to focus on instead of just thinking about what was happening
hope you enjoyed poland!!
i am so pround of you. max and harvey are the best
I wish I had Max and Harvey for all my medical appointments! I’m so happy for you and proud of you for being in control of your anxiety rather than let it control you!
Evie Girl Stay Strong!!!! From all the guys here on shift at the firehouse......Keep on digging!!! Chin Up! We are pulling for you!!!!
Soooo hoping this treatment course does the trick for you in improving your quality of life long-term. Sux that it isn't accessible in your home country but exciting to have a change of scenery for you and what magnificent friends Max and Harvey are. True legends (all three of u)
Sending lots of love ❤❤ Your editing style is really nice and calming, I hope you feel better soon 🫶
this is so nice to hear🥰glad you like it, thank you♥️♥️
Always love to see Max and Harvey because they love you so much!
I’m so proud of you you did amazing and your hair looks absolutely amazing and you make up ❤️❤️❤️❤️❤️ and you’re walking is improving a lot Xxxx
aha my walking isn’t improving at all infact it’s been slowly declining but thank you💜
@@thistrippyhippie just remember they will get better as time goes on.Xx ❤️🖤
this vlog felt very real, i enjoyed it a lot, and it felt like i was there with you. you’re so brave, and inspiring truly. hope these next months won’t be too rough on you❤
Oh, Evie, Max, Harvey and a cat cafe were so cute❤ Made my day
You did amazing, so proud of you. Our minds have the power to make it feel like the world is coming to an end. But we forget that the mind is just as powerful for creating positive outcomes. We are immensely powerful ❤
So happy for you and glad that everything went well, you're an inspiration and a true light in this world.
I’m unbelievably happy for you and love you with Max and Harvey’s love for you like brothers
So glad you’re doing alright!!! Glad the treatment went well and it was awesome to see the guys with you as well! I’m sure they were a massive comfort! ❤️
Max and Harvey are so wonderful. I wish I had friends like them!
You will probably not read this, but I just wanted to say how proud I am of everything you do Evie! ❤❤ To stand up and fight against so many different issues is just amazingly tough, and I am so happy for you to have started your journey towards recovery ☺ Sending you so much love!💖
I actually am so excited to see that your tics are not as bad as they were back then,All prayers worked and I can’t stop smiling and your just teaching me and everyone else that watches your content to Stay strong and never give up,
*Suffering does not last forever*
You Get This 💙 Evie
This makes me happy for you Evie to have supportive family and friends...what I'm missing is just friends...wishing I had some...😢
Same here , but when it comes down to it , if we have no friends usually it could be that God does not see the ones around us as friends . Most of mine have passed away , all my family has passed away as of 2 years ago , and my wife stole our daughter and bailed on me as I was dealing with being sick .
Wow...I'm so sorry...😢@@jasontimothywells9895
I love the crochet cardigan💜
Evie, I’m so proud of you for taking such a big step. I hope that all is going well as your body deals with things! ❤❤❤❤
Max and Harvey are true friends right there❤ they showed up over plane to stay with you thru your infusions
YOU GO GIRL! YOU CAN CRUSH THIS!!!! We're rooting for you!!!
You got this, and sending hugs! So happy things worked out.
God bless you, kiddo. Always be strong.
I almost want to cry im so happy for you! I hope a new improved chapter of your life is soon to begin❤
I love this video so much I’m so proud of you Evie sending some loving ❤❤
I'm so happy you are getting the treatment you need Evie, I'm proud of you!
Máš neskutočne silnú mamu ❤
I wish you all the best Evie!!!💚💙
Love all the support you have.😊
So nice to see friends supporting friends like this. Just having a distraction can make things so much easier.
You’re a strong girly✨🌼
Also, side note for people with anxiety or any heightened emotion - i was shown a video yesterday called the struggle switch by Dr Russ Harris. I think it’s a good watch and might help or interest some people 😌
Thanks for the captions, they're highly appreciated ^^ I hope to see them in all your videos now, although I know it does take a lot of time and energy 💜
Excited to watch!! ❤
You have such wonderful friends! I have MEcfs and pther chronic illnesses and had to leave sixth form when i got really ill. Most of my friends have drifted away and i dont have the energy to keep in touch. I often feel like i would be a burden but we definitely shouldnt listen to what our brains tell us! ❤ your friends clearly love and care for you which was so beautiful to see.
I really loved this new video, for better or worse you never stop fighting and that is very important, thank you for sharing your experiences, you know and I also know that all this is not easy, but I love your way of always having something positive and see behind all the bad there are always wonderful moments, I also went to the aquarium last year in August the month of my birthday really sorry that you had a seizure there, but I know just like you that in the end it will all be worth it, sometimes you have to take risks to move forward in this Life, you know we don't live in easy times all over the world because there are many people who don't want peace, I'm glad you are very happy, take care of yourself friend, I hope you feel better with this treatment, by the way I saw that Harvey's finger almost at the end 😂 the guys are very funny, blessings ❤️🐼🤗❄️💪
Nobody:
Literally nobody:
Evie: randomly saying some of the the wisest things I’ve ever heard. Also the amazing warrior will unintentionally provide the life advice I’ve really needed to hear.
Evie if you see this: thank you for everything. Sharing your journey means you have to be vulnerable, yet you are so strong. You remind me that things can get better, and I’m not alone when things get bad
omg Evie u are now in my country. im so proud and thankful for u just being. it feels like u are my friend.
Im so glad you're finally getting treatment ❤ i hope it all goes well you deserve the world after everything youve been through
that cold feeling when you get stuff in your veins is always so weird. had an iv for the first time last year because my health was wonky, and i distinctly remember that cold feeling. like the veins themselves were freezing. i was kind of amazed by it but also didnt want to think about it too much 'cause i thought i might freak out lmao.
Please let us know how your first infusion went. I’m so excited for you and I am praying that it goes well. You got this girl
So glad things went well, and hope they continue too. 🙏🙏
Thank You for sharing your journey with us. My Wife has to deal with Epilepsy and frequent Seizures as well, but I will refrain from saying I know what you are going because every ones issues are different. You have a great family who supports you very well. Take care and be well.
Good to see you enjoy short visit in Poland, try on summer time and get well soon.❤
Proud of you hun sending you a huge hug 🫂 ❤ you got this your a warrior x
Stay warm Poland very cold 🥶 hope u enjoy your stay in Poland hun
Thank you for this video I loved it. Sending you lots of love and hugs and support
Hi I'm very happy for you it's great to see you have something very positive 😊 going on for you wish you the best take it easy and take care I think your amazing take it easy bye
Good to see two warriors got ya back everytime you need them. Take care and keep it strong red girl 💪😎
I don’t want to claim that I know what you are going through because I don’t but I do want to wish you nothing but good healing vibes! I’ve had to be on ivig for a blood disorder and it was hard on my body so I just hope you don’t have the same issues. If you do though please know that even if it feels like it’s never going to end it does and you are valid for any emotions that you may experience while you’re on ivig❤
I love it when you do these types of vlogs! I'm hoping you get better very soon!❤
i love making them🥰thank you🫶🏻
Hi, i came to the conclusion that i can't watch your videos because it triggers my tics but im extremely happy to see that you are getting your treatment and based on the comments i see that everything went well, i am so happy for you, you deserve this
Im so proud of you it looks like a stressful time, you're so strong!
Safe travels! I hope everything goes well, and you continue to heal. ❤ I know you will have finished traveling, by the time you see this, but I believe "well wishes" travel through time. ☺
Max And Harvey are Totally Hilarious and great friends to have when going through something like this. So Proud of Tou Evie. Your amazing ❤️❤️💜💜❤️❤️💙💙💜💜✌️✌️✌️
Hang in there Kid. Hope this helps ease your condition. You have an excellent support community around you. Stay safe and I wish you well.
so happy for u evieeeee
Wishing you the best evie
We don’t need any entertainment or energy levels in this videos, love….just seeing you and your journey is enough. You could post a nap and it would be enough. Much love! ❤
Hi! Hope you enjoyed being in Poland❤ I live here
You're strong, hope you're doing well💖💖💖
No we love you and im glad shes getting the help she needs
i got your book and its really cool and nice to know you more
You got your infusion on my birthday lol! as someone that has also delt with anxiety, various heath issues, and infusions I'm glade it all went well! I hope it really helps you
I am so happy that things went well for you!!❤
SO much pride for you Evie!! You're my hero❤️ also!! The crochet sweater you wore when Max and Harvey arrived, I have to know where you got it!!
a very kind woman in america custom made it for me as a surprise🥰beautiful isn’t it💜🦋
@@thistrippyhippie it's incredible!!! I'm a crochet artist myself and am super inspired by it😊
Every triip has its up and downs, but well done and congrats Evie!
I hope everything works out well for you.
Lotsa luv and best wishes !
Some people in this world just have a beautiful soul it has been said that true beauty is like a stained glass window and can only really be seen if theres a bright light on the inside. I think you have the sun inside of you.
The snow looks so cool. The snow in Australia is literally just mush.
so pleased to hear it's going okay!!!
6:03 You're on the correct side, Evie! :)
I'm so glad that you're finally getting the treatment you need! Just curious, why isn't this something you can get done in the UK - is it a new treatment that hasn't been approved yet?
Your so brave well done and I hope everything goes well for you 💜 😊
Glad to see you fine ❤.
You are doing great! Lot's of Love ❣
Hello Evie! I'm also seeking help for an infection, in this case, a viral one. I googled if SOT could also help fighting mine, and yes! But in my country they don't give it either. Could you please tell me where you had it? I'm feeling big pain, fatigue and anxiety for a while now, more than one month, that doesn't go away. Your video gave me hope that I can get treatment, because here I've seen already many doctors and everybody says it's nothing, but I know it's something, because I've never felt like this before, it is affecting my breathing and even my vision, not mentioning the headaches and the anxiety. I hope you get better day by day and that your health may be fully restored. Big hug, Joana
*i hope you get everything your heart desires*
You've got such good people in your life. 🥰❤
Really glad to hear everything went well Evie :)
Your so gorgeous and strong in so proud of you❤
Stay strong and keep fighting ❤ love you
❤❤❤❤❤