Infusio – Day Three

I slept much better on Tuesday night and didn’t wake the next morning until 5.30 am. I was grateful that from the minute I woke up I felt so much better, far less nauseous and revived from finally getting a good night’s sleep (or as revived as a Lyme patient ever feels; it’s all relative of course!). I managed some breakfast and tea in the hotel room, and we were off to Infusio for a 9 am start as was becoming routine. I was scheduled to have IV Therapy first thing, and as I had arrived a little early I got my line put in right away. I had some of the same IVs from Monday and some new ones; Cell Prep, EDTA DMSO, pH Regulator and Dioxychloride followed by Folic Acid, Glutathione and Phospholipids. Thisadded up to a lot of fluid bags to get through, so I made the most of the gorgeous weather by getting comfortable on one of the loungers outside in the sun. Everyone thought it was so funny how happy I was just being outside and soaking in Vitamin D, but honestly the beautiful IV terrace could not have been further away from the basement room where I get my IVs each week in London and I was so appreciative of that (although my clinic does a wonderful job in terms of treatment, the views just can’t compete!). I sometimes think that I was born in the wrong country, because I feel so much happier and healthier when it’s warm and sunny; my joint pain lessens, my skin clears up and I just feel brighter in myself.

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After getting some rest as I made my way through the IVs, I FaceTimed with my sister and was catching up with her when my hand which my line was hooked up to suddenly started burning. In the space of about a minute it went from discomfort to excruciating pain, and Hollis slowed the drip right down and put a heat pack on it. I had just started the Dioxychloride IV which is quite a strong antimicrobial, so we initially thought it was from that, but after it continued to burn even after moving on to the next bag, it became clear that it was being caused by the vein. The heat pack did help somewhat but I was still in a lot of pain and had to receive the last IVs very slowly. I was relieved when they were finally finished as my hand remained very sore and by the evening it was bruised and swollen. I was grateful that my veins had so far held up okay throughout treatment and hoped that this uncomfortable experience was a one off.

 

I was feeling pretty weak and dizzy, so I stayed on the terrace chatting with some of the other patients whilst Alex kindly went and bought me a salad and smoothie from Kreation for lunch. Kreation is a really cool organic juice bar right next to the clinic, which also serves salads, wraps and cookies with lots of naturally vegan and gluten-free options. The café décor is really pretty, and it even has a ‘juice ATM’ out the front; only in Beverly Hills! I’d been struggling to eat during the day at the clinic so I just tried to have something light which I could stomach. I was making sure to drink loads of water and nettle tea to avoid dehydration and aid my lymphatic system in getting rid of all the toxins which were being released from treatment. Dr Kim came out to speak to me about the plan for reducing my Amitriptyline medication, and explained that she had found a specific protocol which should mean I wouldn’t go through withdrawal and experience all the awful side effects I have previously had when reducing the dose. She said that she was just waiting on one more ingredient to go in the detox IVs, but as soon as this was delivered we would start with the tapering. I felt very encouraged by this and appreciated her taking the time to explain the plan, I had previously dealt with doctors who didn’t seem to comprehend the difficulties I have encountered with being on Amitriptyline. In many ways it has been a miracle drug for me, as it was one of the first things which gave me any improvement in my symptoms; it helped hugely with my neuropathic pain and lessened my episodes of vomiting, but unfortunately this came at the cost of a whole host of unpleasant side effects, and a reliance on a medication which I didn’t feel comfortable being on at such a high dose in the long-term. I will save the detailed version of my experience with Amitriptyline for another post, but let’s just say I was extremely excited at the prospect of reducing my dosage under the care and medical supervision of the clinic, and hoped that Dr Kim’s plan would enable me to do this as painlessly as possible.

 

After lunch I spent twenty minutes in the Nova Bed, which was my longest stint yet, and then was sent to the Lymphatic Suit for another forty-five-minute session. Since I wasn’t feeling nearly as sick today I found it more relaxing and therapeutic, and took the opportunity to FaceTime with my parents for the first time since starting treatment, as they had been abroad themselves on holiday. Next up was my daily thymus injection, which I felt I was becoming a pro at, having worked out that the best technique to ensure minimal pain was to stand and put all my weight on the opposite leg. My final appointment before finishing for the day was another General Diagnostics Scan and treatment, and we were then out the door by 4.30 pm. Apart from my swollen hand I was feeling really good, and was amazed at how different I felt to the day before. We walked back to the hotel via Rodeo Drive and had a browse in a couple of the beautiful shops, although I felt extremely out of place in my treatment uniform of leggings, pyjama t-shirt, no makeup and bandages. Once home we headed to the roof for a ginger beer, which was becoming a bit of an end of day ritual, and then ate dinner in the hotel again, although tonight I was well enough to actually go down to the restaurant and eat in which was really nice.

 

I was feeling so inspired being at Infusio and being around people who truly believed I could get better, and who were behind me every step of the way to do so. It’s hard to explain but mentally I felt so good just being in LA and getting out of my normal routine at home. I absolutely love London and think its a wonderful place to live, but after almost three years of being so sick there, it definitely holds some difficult memories. After so long of being too sick to study, work, socialise or even leave the house most days, I was really thriving to be somewhere different, doing something with a purpose every day, and feeling productive and like I was achieving, a really alien feeling to me and one which felt really good. I was also really appreciating how focused on health and wellbeing LA is, and how easy it was for me to eat out with all my food allergies and dietary requirements. It felt like it was almost more unusual for things to contain gluten than not, and restaurants were more than happy to substitute and accommodate any order. Obviously this was great in a practical sense and it was exciting to be able to find so much choice of meals I could actually eat, but it was also good from a mental standpoint. One of the worst things about having severe food allergies, is how unsocial it is, how difficult it is to eat out in a social setting, and how awkward it is to have to ask endless questions to restaurant staff, feeling their judgement at you seemingly being difficult. So far whilst being in LA I hadn’t encountered this difficulty at all, in fact I felt totally normal as most people around me seemed to be doing the same; everyone was either gluten-free or vegan or paleo, in essence I didn’t feel like the odd one out for once and that was a really comfortable feeling.

It had overall been a really great day, easily the best I had felt since arriving, and I was noticing improvements in some of my symptoms already. Although I was very tired from the treatments, my energy throughout the day seemed better and more consistent, and I was noticing small changes with my neurological functioning. It’s quite hard to describe but my brain-fog had started to lift and I no longer felt so jumbled in my mind. I was finding it a little easier to talk to people at the clinic, whereas previously I was always struggling with finding words, comprehending information and maintaining eye contact. Only subtle shifts really, but I could feel them none the less, and after experiencing steady neurological decline over the past year and a half, I was cautiously excited at the realisation that there may be potential to improve these debilitating symptoms. I had ended day three at Infusio feeling truly happy and fulfilled, and Alex mentioned that my eyes were looking more blue than they had in years, which I hoped was another positive sign of good things to come.

 

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