True Story by Kerry (Novavax)

Kerry, 63, Tauranga, Neurological Impairment

My name is Kerry, and this is my true story

Novavax # 1: 4301MF005

Novavax # 2: 4301MF005

I’m 63, I don’t drink or smoke and am vegetarian. I have PTSD from being in a building that collapsed in the Christchurch earthquakes and have been on a low 25mg dose of an antidepressant (Sertraline) for many years. Prior to having the injection I kept healthy and active. I was doing dog walking part time, and I had volunteered for many years with both the Red Cross, and a homeless organisation, and was also doing some work in mental health and addiction services for Bay of Plenty DHB. I was a bit non-conformist and did my own projects. I’d created a brochure on ‘Conscious self-care’ for mental health sufferers – 1000 brochures were printed and ready to go, but the mandates halted me being able to deliver them. I never wanted the injection – it was a firm no from me as it was still in trial and experimental. I’d experienced medical drug mismanagement in the past. My body is sensitive, so i’m very wary of what I put in it and had worked hard to get myself in a good place with my health. They’d set up a special jab clinic in Tauranga for concerns and potential reactions and I spoke with the senior person there for almost an hour with my questions. He couldn’t get me across then line.

Due to being unjabbed, I ended up having Christmas 2021 on my own, the rest of the family were down in Christchurch – it was decided that it was best for me not to be there to protect my mum. In early 2022, I became aware of Novavax and it being a completely different injection make up (I thought it would be the lesser of the two evils). My daughter in Australia had been scheduled for a complex surgery and I knew she needed family there post-surgery to help look after her son (14 months old at the time), I went against everything in me to have the injection so I could be there for her, and put my name on the urgent list for when Novavax became available – Tauranga was one of the 9 places in NZ you could get it.

I had my first Novavax injection on 18th March 2022 and felt absolutely fine which shocked me, but I was delighted. My daughter’s surgery then ended up being postponed without reschedule date and it was the last straw for her, as it had taken a lot to get to the point of having it booked in, so it was decided for her to come back home and have the surgery in NZ and I arranged for them (and the dog) to come.I followed through and had the 2nd Novavax injection on 8th April 2022 and my daughter and grandson arrived the following evening.

Within 48 hours I had my first symptoms with trouble speaking. I wanted to say something but couldn’t get it out. It was like there was a big block in my head, and it hurt. When I did speak, It came out muddled. I knew that something had changed neurologically. Initially I had thought that I was stressed from organising everything for my daughter to arrive. My daughter started to make comments “I can’t talk to you, what’s wrong with you?” I tried my hardest to stay composed, I knew I had to be there for them and felt it was my duty to put them first.

I was at my doctor on the 13th April worried about what was happening to me. She thought I had a lot on top of me so she wasn’t surprised and said maybe I just needed extra support and to see a counsellor.

I started writing things down in a diary each day from the 14th April as my thinking was so foggy, I felt confused, my thoughts had slowed significantly and I had huge difficulty processing them. I’d written ‘I’m unsure if it’s that I worked so hard to prepare for my daughter and grandsons’ arrival, or whether it could it be side effects from my 2nd Novavax injection? and I’ve suddenly had a big cold sore on my lip, which I’ve never had before’.

I was also experiencing high anxiety out of the blue so went back to the doctor the following week. I’d had depressive episodes in my past, but not for years, but it felt like she’d just honed in on that and put what I was experiencing down to my mental health, and advised me to double the dose of my antidepressant medication. I’d known in myself that this was something different – I felt so disorganised, my mind in a tangle, and I had painful pressure in my head that was more on one side. I had enough to try and cope with caring for my grandson and I couldn’t let my daughter know I was struggling, but she observed a lot from this point as I had become very clumsy and uncoordinated, and she couldn’t trust me driving (I knew I shouldn’t have been driving). I was beside myself and running to the doctor every week over 6 weeks as I was scared.

I’d attempted to get my daughters surgery organised, but the whole situation was very difficult – I was coping the best I could and trying to care for them but I wasn’t up to it so she ended up going back to Australia within 6 weeks. She had also had the Novavax injection, I’d seen her have a bleeding nose several times and also drop things out of her hands which I know now were from the injection.

After they’d gone, on Friday 20th May I went to the mall to get groceries, which was all I was capable of doing. I’d gone into the toilets before getting to the supermarket. I suddenly started seeing crazy shapes and colours before my eyes. I could see all these black things bouncing off the back of the toilet door – pale grey and pale brown wormy looking things floating around everywhere. I felt scared and the pressure in my head was unbelievable (that was the first visual disturbance episode, I still have them, but this had been the worst one). I had a tight chest and was finding really hard to breathe so drove the 5 minutes home, immediately calling Healthline who decided to call an ambulance. I arrived at the hospital about 2pm and was put in an isolation room. I had really high blood pressure and my notes state my symptoms were brain fog, exhaustion, vision issues, head pressure, urinary frequency, hair loss, weight loss and generalized weakness over the last 6 weeks. The nurse commented that ‘it could well be a injection side effect’ and had written ‘The history over the past 6 weeks happens to line up with her 2nd Novavax injection, with gradually worsening symptoms. Wakes up in morning feeling like death warmed up, constant feeling of pressure over the top of her head and hardly has energy to do anything’. Simple things like getting up to go to the bench or the toilet seemed impossible. They discharged me about 11pm that night telling me “Because of Covid, it’s better not to stay here”.

My symptoms continued. I was deteriorating and not able to look after myself and at a point of withdrawing from everything I was involved in. I’d lost so much weight and remember telling my mum over the phone that I needed help. I had a call from a Red Cross colleague as I’d not turned up for my weekly shift and she was worried, she could tell over the phone I wasn’t well. I went to see her at work some weeks later and she came up to me and held me and said, ‘what have they done to you?!’. I was pale, thin, and weak and remember saying ‘it’s fme over’. She was shocked with my appearance and called me the next day saying to check my email. She’d sent a ‘To whom it may concern’ letter listing everything she’d noticed (she’s in her 70’s and did this of her own accord).

I’d gotten nowhere with my doctor; she’d tried to treat me for some of the symptoms I had eg. I had lumps in my head, so she gave me a prescription for prednisone for it (but I didn’t take it), She prescribed me facial nerve medication another time as I’d developed a tender lump on the side of my head and one above my right brow. She sent me for blood tests and an ecg because of the pain in my chest but everything came back normal. It felt like she was treating me blindly and I felt very frustrated by her.

She likened my symptoms to ‘Long Covid’ yet I’d not had Covid at all. She printed off all these pamphlets on Long Covid Syndrome and I said to her that post-vaccine syndrome mirrors the same symptoms – she totally ignored me. The last appointment I had with her was on the 14th June. I cried unconsolably in her rooms for about 20 minutes. Nobody was getting it – She’s been on this track about Long Covid, but with all that was going on in my body I was shut down and couldn’t speak, It was such an effort to walk and talk. I’d been in such despair and she was closed off – in my mind I knew It was useless coming back but knew I’d not be back again after this. When I left, she said in an emotionless tone ‘Take care of yourself Kerry’. I felt so alone, it was so hard, and no-one would listen to me. I considered taking my own life. I knew it was the injection that had caused all this, and I had nowhere to go or anyone medically to turn to.

On the 17th June, I contacted the vaccination team I’d previously spoken to. I told the head nurse of the team who I’d spoken to before what was going on with me, she was genuinely concerned and very sorry. On the 20th June I emailed Bay of Plenty DHB telling them about my injury in hope of a response and acknowledgement. On 24th June I posted on the Freedom of Choice Tauranga Facebook page asking if anyone else had experienced any adverse effects. Within 24 hours I’d had about 180 responses! It was overwhelming and I found it a bit too much. When I was able to sift through responses, people had mentioned NZDSOS and Health Forum NZ.

On the 27th June, I called the DHB to follow up on my email as I hadn’t had a response. The person on the end of the phone agreed my email should be acknowledged. On 28th June I was advised by someone they had submitted an adverse event on my behalf with CARM. I’m not sure who (my memory was hazy at this time), I think it was Health Forum NZ. On 30th June I had a call with NZDSOS,which turned out to be not a great experience as the doctor hadn’t conducted herself properly and wasn’t clear in her communication. She was late for my consult, then had to call me back twice more later in the day to finish the appointment (one of the times said she had to go as her brother was calling). She bombarded me with information around my symptoms and was all over the place. She sent a link for me to print that was 84 pages and I jotted down all the supplements she’d said. After I’d gone out to find and buy the right brand of some of the supplements she’d listed, I learnt that $500 of supplements were on its way to me as they sponsored me, but the doctor had never informed me anything about it. A lovely nurse from NZDSOS called saying a box was on its way. A complaint was made, and I was reimbursed the cost to send the box back.

On 4th July I went to a new doctor at a bigger clinic. I specifically asked the receptionist whether they had any open-minded doctors that I could see. She called me back a short time later saying they had two, and I made an appt. Within 1 minute of meeting this doctor, I knew she was the doctor for me. I described what I’d experienced and she straight away said “Your symptoms are similar to a stroke”. I’d also had swollen glands and an inflamed throat that for a few weeks that I couldn’t shake. She also said “It [the injection] has obviously assaulted your immune system” and “The residue from the it can last a long time”. It was clear she’d seen more than just me with post-vaccine syndrome, but advised that there wasn’t a lot more she could do for me and just that I needed to look after myself. She could see on the system that my previous doctor had referred me to the ‘General Medicine’ team at Tauranga Hospital (they see people with complex undiagnosed health issues), but the other doctor had never told me.

After receiving an initial referral confirmation from the ‘General Medicine’ team, I had to follow them up as I didn’t hear from them. The scheduler offered me a cancellation appt for 19th July. The doctor I saw acknowledged from my medical notes that there was a lot going on. It was hard for me to explain as months had passed, it was hard to condense, and I had such problems trying to communicate. She acknowledged how much of an ordeal it was for me and could see that I wasn’t functioning well. She told me she believed me, and said they’d seen many “Weird and wonderful things” post Covid injection and noted that symptoms improve over time. She said, ‘trust me, leave it with me’, but she’s since left there. I was also referred to Allied community health home assessment in early august as I needed some care. They told me they’ll be in touch, but I still haven’t heard from them 2 months on.

In July I wrote to Jacinda about the debilitating symptoms I’ve suffered, that I’m frightened, scared, asking for help, and my life has been seriously impacted by the injection to the point of suicidal thoughts. I had a standard letter back suggesting I contact the MOH. I did, and they sent a similar response saying to write to the Covid-19 response team, so I did that too. They just want to pass the buck.On the 21st July, Helen from Health Forum called, she mentioned neurological impairment was quite a common adverse effect. I wasn’t sure how I connected with her (memory issues) but she was my lifeline at that time – I knew that I was listened to and believed, and I thanked her for that.

I had an MRI on 15th August and the follow up with the General Medicine doctor in September. I explained I’d also had hair loss, shaky hands (embarrassing as people notice) and the daily visual disturbances seeing black dots and grey circles. He’d said, “Nothing points to why your symptoms are happening”. The MRI results on the report in front of him stated ‘Chronic small vessel changes’. He was still deciding my last appt a few weeks ago whether to send me to an immunologist or infectious diseases specialist.

I feel the damage has been done and they’ve left it way to long to treat symptoms – the system is too slow. Unresolved symptoms I’m left with are Nausea (deep in my stomach), fatigue, a funny taste in my mouth I can’t get rid of, dry mouth and my tongue feels funny, hair loss, odd feeling in my right eye and visual disturbances. I had a head cold two weeks ago which I’m still fighting – I would normally bounce back quickly but it’s lingering. I count myself lucky I’ve recovered as much as I have. I find it unacceptable that I’m maimed with my vision and my hair loss and had been completely incapacitated. I went to bed many times wondering whether I was going to wake up the next day. It’s taken a big emotional toll.

I look after myself the best I can and have managed to gently start back with some dog walking for the last 5-6 weeks. and go into the volunteer organisations when I can manage (sometimes only an hour), they are happy to accommodate what I can manage, I’ve been testing out my capacity over time. I hadn’t really told anyone about what happened to me due to fear of their response. I keep moving forward the best I can and count myself lucky, but also worry whether my symptoms willworsen in future.