Lou’s Lyme recovery journey

26/07/2023

https://m.youtube.com/watch?v=l72EfWI-tUI&feature=youtu.be

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24/11/2021

They’re little angels everywhere,this very creative lady who used to freshen up and clean our rooms everyday used to reposition certain items to give you a smile 😊

Many days when I was feeling a bit sore and exhausted she made me feel totally distracted and reminded me to smile.The world and me,needs more lightness ❤️

Her name is Christine 🥰

24/11/2021

Plasmapheresis 🩹💉🩹💉
(Transylvania style)

This was the procedure I dreaded the most
However it was very bearable with a bit of local anaesthetic 💉

🩸Some local anaesthetic cream was rubbed into my neck where the dr performing the procedure, made a small incision

🩸Dr placed in a bigger than normal catheter into the central vein near my collar bone
It felt slightly uncomfortable when the incision was being made but they gave me a little sedative and some lovely nurse Anne was rubbing my leg, bless her, that helped calm me down too

🩸So your blood is filtered, plasma separated into bad and good
The bad or toxic plasma in the pic below which is brown is removed 🙏and the yellow plasma is filtered back into the catheter

🩸Total procedure time is approx 6-7 hours
The filtering machine behind my head in pic does all the work and I even slept for one hour on the bed
So there was absolutely no need for all the worrying I had been doing, it wasn’t too bad at all.

🩸Port stays in your upper chest area until you are discharged,it can be a bit uncomfortable to be honest , particularly to sleep in but you get used to it and saves a lot of prodding and looking for veins for infusions thereafter ❤️

24/11/2021

Update 💊💊💊

Apologies I haven’t posted in a while
I arrived home on Saturday 13 th November( which seems like a lifetime ago) however developed a horrendous urinary tract flare due potentially to use of catheters in Germany.I was so weak and slept for literally days
After 2 rounds of antibiotics back 2 back I’m starting to feel a bit stronger.
Lots of bed rest,💊💊and hot water bottles 🙏
Thank you for all your well wishes and support
I’ll upload the remaining parts of my Germany journey below 🇩🇪❤️

10/11/2021

Unfortunately we had a Covid outbreak within the hospital, apparently the Covid numbers in Bavaria are very high,so for the past 7 days

😷 We’ve been forced to all wear these new FFP2 masks
😷We cannot mix with other patients
😷We must eat all meals in our rooms
😷We cannot leave the hospital grounds 🙈😩😩😩😩😩😩

Tough going but I’ve caught up on a lot of Emmerdale
I stuck to the rules most of the time .........

Thankfully it seems to be contained but I know one of the patients who got Covid and my heart is broken for them,as their treatment is completely halted and they’re in strict quarantine 🥺

10/11/2021

Beware ⚠️ scary photo coming up

Sorry I haven’t posted for 2 days I was feeling particularly rough but I’m doing a lot better today ❤️
So the below pics is to show the difference between me after hyperthermia number 1 and hyperthermia number 2

Huge difference in the swelling

After hyperthermia number 1,I genuinely was frightened by how swollen I was,however by the time I had my second one last Friday there was practically none ❤️
The human body and how it adapts is just amazing 🤩

Post hyperthermia

💧 You wake up in the recovery room and will drink copious amounts of water
I drank 2.5 litres in the space of 2 hours
It’s readily available there for you

💧You will have a catheter attached which the nurse will remove once you can stand up on your own and p*e by yourself

💧A nurse will be coming in and out to check your vitals on a regular basis

💧You will also be wearing some pampers
( I know .......but thankfully they weren’t needed and thank god for them in case they were eh 😅)

I slept through for 12 hours after the first hyperthermia and about 6 hours the second time

There was no pain after just swelling and exhaustion

Also no more nasty cold sores / blisters the second time. They obviously all rush out during the first one and then, thankfully they’re done ✅

ℹ️ For me and for many other Lyme patients here,the side effects from the hyperthermia did not hit us the next day but the day and days after

For me it was mainly herxheimer reaction I experienced after- so my symptoms of Lyme exacerbated,but you’re given plenty of time to rest and lots of infusions to help the body along with detoxification of the toxins that were killed off ❤️

07/11/2021

Beautiful morning in Bavaria- 🍂🍁 shedding

03/11/2021

The Colonic

So I have my 2nd hyperthermia treatment tomorrow at 8am, so today I’m fasting since 11am and you’re scheduled for a colon cleansing or a colonic irrigation some people call it.
I only ever heard of it from Ruby Wax off the Vauxhall ads years ago, apparently all the celebs do it 🥴

Anyway it’s actually grand, not lovely, slightly uncomfortable and causes cramps but that’s it. The dr doing it is super professional and covers as much of you as possible at all times ❤️
Clean intestines are vital to the hyperthermia procedure

Below is the window you look out at while it’s happening- snow on the tops of the Bavarian mountains 🏔
And he loves 80’s ballads 🎵
Lasts approx 30-50 minutes

03/11/2021

Quick update on the cold sores / mouth/nose blisters situation 😖
I’m finally getting a bit of relief 😅
🙏🙏🙏

Thank you so much to everyone for all your support 🥰🥰🥰🥰🥰
Xx means so much

03/11/2021

So the cap was kept on but you can see the size of the needle 🙈(sorry Barry Geraghty)
This is Neural therapy which believe it or not is not that painful👍Dr Piehler here in the photo is the lady that performs it and she’s lovely, she wears Si perfume ❤️
She injects Lyme patients where they have pain and her injections reduce inflammation in the nervous system thus reducing pain and prompting healing pathways.
With me ,she injected my gums as I’ve terrible sinus / allergy problems and she injected my neck and lower back where I have pain
You feel a tiny 🤏🏾 pinch is all and it’s over
She’s brilliant 🙏

02/11/2021

So I had my first hyperthermia session (1 of 2) last Thursday 💪where they heat your body up to 41.6 degrees Celsius in a little chamber like an ICU unit. It’s 1:1 treatment with an ICU member with you,monitoring you for the 6 hours.
You’re never left alone.
This is the main treatment for Lyme disease over here and obviously comes with risks however has a high success rate of completely killing the bacteria borrelia (Lyme disease)completely. It cannot survive in that heat so it is killed off.
I am completely out cold for the procedure thankfully however 2 days prior you need to put this cream that the dr gives you all over your lips and inside the nose area if you’ve ever had a cold sore before🙈🙈Now I probably get 1 cold sore once every 5 years since I was little
To be completely honest ....... I did do that with the cream,4 times a day both days but I’m still now covered in cold sores 😓
On the sides of my mouth, on the roof of my mouth, behind my teeth and in my nose 😩😩😩😩😩😩but I dread to think if I didn’t use it
It’s a nightmare to eat or drink at the minute but I know it’ll pass 🙏

02/11/2021

This is “blue light therapy”
It’s called this due to the snazzy blue headpiece you wear ...but that just relaxes you really,the real aim of this therapy is oxygen regeneration.
First you place your hands on the gold plates, that measures the amount of oxygen in your body (today I was 94% which I think is good )and tells the machine then how much to emit to you. It comes out through the thin black pole thing,that is aimed at your mouth so you can take it in. It comes out in a fine kinda mist so it’s not too overwhelming.The bed you’re lying on vibrates stimulating the cells also
It’s a nice therapy and lasts about 20-30 minutes