The flight from London to Los Angeles was extremely challenging, just as I knew it would be. I have always been a nervous flyer, and since becoming sick with Lyme Disease I have flown very little, only when absolutely necessary, as being trapped in a pressurised cabin and at risk of catching all kinds of germs and viruses makes me more than a little anxious. The Virgin Atlantic staff were incredibly helpful and we were upgraded to First Class due to my health issues, which definitely made the flight a lot more comfortable. I was so grateful to be able to lie down in a bed, but unfortunately I still experienced horrendous nausea and migraine for the entire flight, due to the pressure in the cabin. I was in so much pain and it was a real wake-up call of how truly unwell I was, I felt so detached and isolated from all the people flying to go on holiday whose biggest concern was which movie they were going to watch first on the plane. We got to the hotel around midnight LA time and I collapsed into bed and straight to sleep. I woke at 5 am which wasn’t too bad considering the jet lag, and I was relieved to be feeling so much better than the night before. We headed out a few hours later to explore a little of LA. I have been to California a few times before, but always further North around San Francisco, so we were keen to see some of the city before treatment started. We spent the rest of Sunday at the farmers market, doing a little shopping at the Grove and then lying by the hotel pool. We went out for dinner at Gracias Madre, an amazing Mexican vegan restaurant I had been recommended, and after a really lovely day we got an early night ready for the first day at Infusio in the morning.
I woke early again and got packed and ready for orientation at the clinic. I was both excited and nervous as I really didn’t know what to expect. I was daunted by both the medical treatment, which I knew would be intensive and very tough on my body, but also simply by the hours and duration of time that would be spent there. Since I became sick with Lyme almost three years ago, I hadn’t worked or studied, and the idea of having to commit to spend from 9-5 anywhere daily was actually pretty scary and I honestly didn’t know if I could do it. We were staying at the Viceroy in Beverly Hills, and although it was definitely not cheap, it turned out to be a great choice as it was so close to the clinic and they had a car service which meant the driver dropped us at the clinic each day. The last thing I wanted to be doing after a long day of treatment was to be stuck in an Uber in LA traffic getting travel sick! Some of the other patients had booked Airbnbs in Beverly Hills and had to move half way through treatment because of mould issues, so I was extremely grateful that my accommodation was so unproblematic and comfortable. We arrived at the clinic for the 8.15 am start and made our way to the reception on the third floor to check in. Although I had already filled in the extensive pre-registration paperwork with my health history, and sent over all my medical records and test results, I filled out another brief symptom questionnaire and collected my consent forms. As soon as I stepped through the door, I was immediately struck by the incredibly peaceful atmosphere of the clinic. Infusio talks a lot about the benefits they see in patients by ‘de-medicalising’ the experience of treatment, and that is definitely reflected in the beautiful décor and the relaxing music, it actually feels far more like a luxury spa than a hospital. A lot of Lyme patients suffer from anxiety and PTSD in some medical settings, due to spending so much time getting invasive tests and treatment in hospitals and emergency rooms, so I thought this was a really good concept and I was very happy to be spending the next couple of weeks somewhere that felt like such a safe and positive space.
The first thing on the schedule was the induction which was given by Ivonne, a Holistic Health Coach who actually suffered with Lyme Disease herself, and is now fully recovered after getting Stem Cells at Infusio a few years ago. Ivonne was very welcoming, and her calm and reassuring presence made me feel less nervous about what lay ahead. Sadly, as a Lyme patient, especially in the UK, you experience so much fear and disappointment, and see so much prolonged suffering amongst others in the community. To see someone who has been in your shoes, and is now in remission and living their life to the full, offers a hope that is almost indescribable, and meeting Ivvone and hearing about her journey gave me that extra bit of motivation and belief that I was ready to face whatever the first day would bring. After Ivonne had shared a little of her story, she encouraged us all to introduce ourselves to the rest of the group. There were three other Lyme patients starting the programme in my intake, all with a family member or partner with them for support, and I felt happy that I wouldn’t be going through the programme alone. We had a tour of the clinic, which has rooms located over three floors, and were shown the Operating Room where the Stem Cell surgery would take place, the lab where the Stem Cells would be processed, and the room where we would receive our new Stem Cells. We then headed upstairs to the Penthouse, where we were given a welcome speech and introduced to the other members of staff – doctors, nurses, support staff and management. We were each given a welcome pack which contained our schedule for the week, alongside logistical information and recommendations of places to eat nearby to the clinic. Each patient’s schedule was slightly different, but everyone’s days were jam packed. It was quite daunting to see so much treatment written down on paper, but that was what I here for, and a I hoped that a lot of treatment equals a lot of potential for healing.
Once the welcome speeches were finished, we were started right away on the first IV therapies. I watched a couple of the other patients getting attached to their drips, and my nerves started setting in. Honestly, I have never been good with needles, and before I got sick with Lyme I was absolutely terrified of blood draws, injections, blood; really anything medical made me incredibly squeamish. Obviously over all the tests and treatment of the past few years I’ve become infinitely better, and after nine months of weekly IV treatment I’m very much used to getting stuck. It’s funny, it’s often said that you don’t know how much you can endure until you have to, and this is so true for so much of my struggle with Lyme, but as a fairly trivial example, my fear of needles definitely reflects this. If you had told me five years ago that I wouldn’t bat an eyelid at getting blood draws, IVs and injections every week I wouldn’t have believed you, but it’s quite remarkable how much you can adapt when your life changes and you have to face your fears in order to survive. However, despite my progress with medical procedures, the fact remains that my veins can be difficult; they tend to be hard to find and nurses often struggle to find one which can make things quite uncomfortable. Hollis, the senior nurse on the programme, came over to get me hooked up and he instantly made me feel so comfortable, chatting away and distracting me from the impending stick. There are some people in this world who just have an aura of kindness surrounding them, and Hollis embodies that concept more than anyone I have ever met. He is not only an incredible nurse, but also such a caring and inspiring person, he makes you feel strong and like you are capable of anything, which when you feel so physically and mentally weakened by illness, is so powerful and motivating. After assessing my veins (which weren’t too keen to make an appearance), Hollis went for one half way down my forearm, which unfortunately we couldn’t get and blood starting leaking out. With this, all of the built up anticipation and nerves of the first day came to the surface and before I knew it I was crying. So silly really, but sometimes when I’m really anxious about something, the smallest thing can set me off and I just need to have a cry and then draw a line and move forwards. I was really embarrassed, fearing that everyone would wonder why I was there and how I expected to get through the programme if I was breaking down over the first IV and a bit of blood, but Hollis was so kind, and one of the other patients, Gena, who was sitting next to me, immediately found a tissue for me, and we had a little moment of shared connection and empathy. I got myself together and Hollis got a good vein in my hand with no problems. I was off, started on my first IV treatment.
IV therapy lasted for the rest of the morning and I had five different IV bags in total. First was stem cell prep, designed to break down the cell membrane, followed by pH regulator, liver detox, ozone and glutathione. I have glutathione a lot at home & tolerate it very well, but the pH regulator made me feel pretty nauseous, and I had burning at the back of my throat which made it a little hard to breathe, but overall it was all tolerable. Whilst I was getting the IVs, I had my first consult with Dr Kim. We discussed my medical files, Lyme tests and other blood work which she had looked over, and I was able to ask her any questions I had about the upcoming treatment. It was a totally new experience for me to consult with an actual LLMD or Lyme Literate Doctor, as we don’t have any in the UK. Whilst I am fortunate enough to have a really good team of physicians who help with the sub-conditions and symptoms I suffer with, & excellent nurses, holistic practitioners who are very knowledgeable about the disease, this was the first time I had been able to consult with a medical doctor who specialised in Lyme Disease. It’s pretty crazy that I had to leave the country to do so, but regardless I was very grateful and really eager to hear what Dr Kim had to say. She explained that all the treatment would be individualised and tailored to my condition, and would be refined based off my scans that would be conducted throughout my time at the clinic. We discussed some of my concerns, one being that I wouldn’t be unable to take anti-histamines after getting Stem Cells as they can interfere with the healing process. I have been heavily reliant on conventional anti-histamines for years to help manage my allergies, but Dr Kim was confident that by starting to take the histamine scavenger on the post-Stem Cell Home Programme right away, I should be able to keep on top of my reactions. Another key concern was the high dose of one of my daily medications, Amitriptyline, which I have been taking since 2015 to manage my nerve pain and Cyclical Vomiting Syndrome. She expressed that I should try to get down to less than half the dose I was currently on before having the procedure, and that she would look into ordering some detox IVs to counter withdrawals. I’d previously had horrendous withdrawal symptoms from reducing the dosage of this medication, and it had taken me over a year to get down from 150mg to 50mg daily, so I was a little nervous about this step but I was reassured by Dr Kim’s plan. She was so patient and thorough in explaining everything to me, and to feel this supported and have so much time given by a Doctor was a totally new experience for me, I felt very reassured that it would be Dr Kim who would be doing my Stem Cell Procedure as I knew from speaking with her that I could trust her 100% and that she really cared about her patients. We also discussed that I should try to stick to a vegan diet as much as possible, with fish and eggs if needed, during treatment to ensure inflammation was as low as possible. Whilst we were talking, Caryn, the hostess bought us green juice, herbal teas and broth, which she would serve throughout the day, alongside almonds and lots of water which I made sure to drink to help my veins by staying hydrated. Caryn is such a warm and kind lady, and she was so sweet complimenting my accent and making me laugh from our first meeting. She was always running around helping the patients and she helped create such a lovely atmosphere in the Penthouse.
After my consult I went outside onto the roof terrace and sat in the sun. The terrace at Infusio is absolutely beautiful, it’s so tranquil and the view is stunning. I absolutely love the heat and I was so happy to feel like, even though I was hooked up to an IV pole, I was still getting a bit of Californian sunshine and could pretend I was on a (slightly unconventional) holiday. Whilst we were outside I got to talk for a couple of hours with Gena and her Mum, and I instantly felt connected to them. It turned out that Gena and I had a very similar Lyme story, from the length we had been sick, to the treatments we had done, and just our overall outlook on the disease and how it had affected our lives. I was so grateful to meet someone who I knew I would get on well with, and I hoped that we would be able to offer support and friendship to each other over the next couple of weeks. I also got to meet some of the patients who were in their second week of the programme, which was really interesting, and I got to ask them how their experience had been so far. They were all very complimentary about Infusio, and were feeling positive, albeit totally exhausted and drained from all the treatment. Before I knew it, my IV’s were finished and it was lunchtime. I felt well enough to walk the couple of blocks to Whole Foods, although once we had got there I realised I wasn’t hungry at all. I managed some avocado sushi but really had to force myself to eat as I was feeling pretty sick by this time from all the IVs.
We made it back to Infusio by 1pm, and my next scheduled therapy was the Hyperbaric Oxygen Chamber. The chamber looks a little like an aeroplane simulator, and you stay inside it for around forty minutes whilst the atmospheric pressure is increased and controlled to ensure inhalation of pure 100% oxygen. The increased flow of oxygen should help to restore normal function to cells and organs which have been damaged by disease, and is supposed to be particularly effective at targeting Lyme Co-infections. I was a little nervous because I don’t really like the feeling of being trapped, but once I was inside and had got the oxygen mask on I realised there was absolutely nothing to be worried about. I lay down under the blankets and rested, and honestly shed a few tears at just feeling a bit overwhelmed at the whole experience so far. I was so grateful to be there, and really thrilled to finally be around doctors who properly understood what was wrong with me and had a plan to make me better. But I also felt overwhelmed at the thought of all the treatment I would be undertaking over the next weeks, and the intensity of the schedule was really sinking in. I felt a little detached from my own body, almost like I was looking in at someone else in the oxygen chamber, a feeling that I’ve experienced many times over the past three years, as it’s difficult sometimes to accept that this is my life and these are the lengths I have to go to to try and survive and recover to get any kind of ‘normal’ life back. I was so tired the time passed quickly, and soon the cabin was being depressurised and I was out, ready for my next appointment. I had my first Global Diagnostics Scan and therapy, a process I would be repeating several times over the course of the programme, where I had magnets attached to a machine stuck onto the inside of my ankles. I then had to switch my phone off and sit completely still without talking for eight minutes whilst the scan was carried out. After that I could talk whilst the treatment completed over the next eighteen minutes. The whole system is based on bio-energetics and uses electronic current to scan the different systems of the body and flag specific areas of inflammation. The results of the scan are used by Dr Kim to tailor the IVs for the next day, and at the 100-day follow-up I will be scanned again and we will then discuss the comparison of results. Patients aren’t given the results of their scans during the initial SVF treatment as the clinic finds that it can cause them to go and try to treat specific problems that may be identified, when it’s really important to do as little alternative treatment as possible during the 100 day post-Stems period. Some patients were a little unhappy about this as they wanted to see what their scans said, but I was quietly relieved that I didn’t need to look over them, as I often struggle with health anxiety and didn’t want to be second guessing problems that may or may not be there by the time of my follow-up in September.
Next I was back up to the Penthouse and had my first session in the Novo Bed. The Novo Bed looks like a traditional tanning bed but delivers Photobiomodulation Therapy, which is a kind of low level laser therapy. I had to take off my clothes and jewellery and lie in the bed whilst it heated up. This kind of laser therapy is supposed to reduce inflammation by repairing tissue and cells and increasing blood circulation. I was to use the Novo Bed several times over the coming weeks and started with only eight minutes today, which would be built up to twenty by the end. Finally, Caryn informed me that I was ready the last treatment for the day, injections! Now of all the treatments on the schedule, I was least looking forwards to the injections, even less so than the actual Stem Cell Procedure itself. Note my previously mentioned aversion to needles, and you can imagine that I was not very keen on the prospect of receiving thirteen injections in one sitting. Hollis explained that I was to receive twelve injections of NAD; eight in the stomach and four in the back, and then one intramuscular Thymus shot . Now I’m used to getting intramuscular shots for B12 and vitamin D at home, but I was really nervous about the stomach shots in particular. The NAD shots were 20mg each and have the ability to help repair cells as well as aid in the production of energy, and Hollis advised that I might feel more energised during the next 72 hours. I would be getting these again on Thursday, but at 40mg per injection. The Thymus shot I would be getting every day, and would be helping the thymus gland balance my immune system. We went into one of the private rooms and I lay down on my back whilst Hollis prepared the injections for my stomach. I have to admit I did start to have a slight freak out and told him I wasn’t ready, but then a sense of calm just came over me and I told myself to dig deep to be as brave as I could be because I needed to get this treatment to get better. Luckily Hollis had an excellent technique by pinching the skin before injecting to distract from the pain; of course they did still sting but it was bearable. The ones on the back were far more painful and I was very glad there were only four of them! I then stood up to get the Thymus shot, and although not particularly pleasant it was all over pretty quickly!
I finished up at 4.45 pm and we walked the ten minutes back to the hotel. I was tired but actually feeling okay, so we went out for an early dinner to Café Gratitude – another vegan restaurant in Beverly Hills where every item on the menu is named after a positive affirmation. It was a beautiful evening and we were able to sit outside which was lovely, and I was back in bed by 8 pm and straight to sleep. Overall my first day at Infusio was a really good one. All the staff were so kind and caring, and it was amazing to feel like I was finally in a place that knew how to treat me, and I could trust that they knew enough about Lyme Disease and my body to give me the best chance possible at recovery. The treatment had been intense but not as bad as I expected, and I was glad to have done the ones I was most nervous about (the injections!) on the first day. It was also really wonderful to meet other Lyme patients, which I hadn’t really been anticipating as I had been so caught up in thinking about what the treatment itself. It’s difficult to explain how comforting it is to connect with other people who have gone through the same things as you, they can understand things in a way that no one else can no matter how hard they try. I’d met a few other Lyme patients at my clinic in London, but this was by far the longest time I had spent talking to other people with Lyme and I really took a lot of inspiration from seeing others battling the same disease which had changed every aspect of my life. Everyone had different symptoms, different challenges and a different story which had got them to this point, but everyone was here for the same reason; to get well. After so many years of walking this journey alone, I felt like I was in the right place to get the help I so desperately needed, and I knew I would be able to take a lot of strength over the coming weeks from the other patients who were also here to fight to get their lives back.