'How was this trial information kept from us?'

Lives Destroyed : Covid 19 Vaccine injuries: Part III

Dublin based Janet Collins is a wife and mother of three children. She compares the treatment of covid vaccine injured people to the phenomenon of Mother and Baby homes in Ireland’s recent past; a refusal to acknowledge an inconvenient reality. Her story is complex. Having reacted badly to the swine flu vaccine (Pandemrix), she researched carefully, seeking any possible dangers attached to covid vaccines. She found none. Circumstances conspired to tip her in favour of taking a vaccine, despite her reservations. This was not an easy decision for her. In light of what she’s learned since, Janet is deeply angry that information that could have helped her make an informed choice was not available to her.

In conversation, Janet mentioned two items of research that helped her. One is a research paper and the other is a podcast featuring injured trial participants.

“To hear people involved in trials coming on and saying this (negative reaction) happened to them during the trials - that was just shocking to me. Just shocking. How was this information kept from us? I am so angry,” she said.

Janet described her treatment post injury as like ‘being the prize that nobody wants to unwrap in a game of Pass the Parcel.’

She suffers ongoing neuropathy (nerve damage) that makes her life miserable.

“I feel they just want to throw painkillers at me. Nobody really knows what to do.

“I have felt gas-lit, ignored, discarded, forgotten about.  If every appointment and test takes six or twelve months when will I ever find answers? As time ticks by, am I missing out on valuable timue to reverse this? Does anybody care?”

Read Janet’s story below.

My name is Janet Collins. I’m a 52 year old wife and mother of three.  I love being in nature and walking my dog. I’m a stay-at-home mother, my days were full of housework, dog walking, cooking etc but I also have a keen interest in psychology and previously studied it at introduction level and then went on to do sports psychology in my forties. Pre-covid I would meet friends weekly for coffee.  Myself and my husband had planned on visiting the Amalfi Coast to celebrate our 50th birthdays and were looking forward to travelling as two again - now that our children are grown up.

Tell me your thoughts on covid and vaccines at the time of your taking the jab. Did you have any reservations about taking it?

Covid was terrifying really when we look back on it.  We all remember the scenes coming out of Italy.  As I have a previous diagnosis of PoTS syndrome (postural tachycardia syndrome involves rapid heart rate increases) I was really worried about how it might affect me.  A family member was diagnosed with cancer during 2020 which was just awful.

When we started to hear news of vaccines being developed successfully it was such a relief.  I would be lying if I said I didn’t have reservations about them as I had experienced an adverse reaction to my swine flu vaccine.  At the time I was told it could be a coincidence and my existing PoTS was blamed.  I personally felt the swine flu vaccine was the culprit but was lucky to recover after about six months. That reaction was mild and short lived compared to the covid vaccine. In March 2021 we lost a lovely neighbour and friend to covid. It was so sad as he was only weeks away from his own vaccine.  As my family member diagnosed with cancer was visiting hospital, the oncologist etc, I was nervous about picking up covid and worried about my loved one getting it. I was conscious of the impact covid was having on my college age kids, stuck in their bedrooms and missing out on the precious personal development that college brings, the friendships and social life.

All of this, together with not wanting to spread covid, left me deciding to take my vaccine.  I had the Johnson & Johnson vaccine on May 23 2021.

What is your injury? Outline your medical diagnoses, conditions confirmed through tests and medical records.

On the day of the vaccine I immediately had a feeling that my throat was swollen and I just felt weird! I took an antihistamine when I got home and was telling myself it was just my head and the anxiety around it messing with me.  The day after I felt like I had the flu. I felt disconnected and had a rash on my torso and pins and needles in my arm. As the days progressed I noticed a constant headache and began feeling pins and needles in my feet and legs. I was having some dizzy spells and a lot of fatigue. To be honest I put this down to my immune system doing its thing and I tried to push through it.

Around this time we also found out my family member’s cancer had progressed significantly and that they would need surgery within a couple of weeks.

Photo by Sarah Kilian on Unsplash

‘Like having a mobile phone ringing inside you’

My symptoms continued and progressed. There was daily persistent head pressure, blurred vision, pins and needles in my head, feet, legs, hands, fluctuations in blood pressure with really high readings at times, nausea, fatigue and daily skin rashes, internal vibrations. (Janet further described internal vibrations as ‘like having a mobile phone ringing inside you, it comes with involuntary muscle movement.’)

My GP sent me for a brain MRI and referred me on to neurology and immunology.  By the time these appointments came around I had found other people online who were suffering similar symptoms. Within this group people were being diagnosed with small fiber neuropathy (burning pain in the extremities), myocarditis, dysautonomia and mast cell activation issues (severe allergic symptoms).  So many of their symptoms resonated with me.

Dysautonomia symptoms include:

Abnormally fast or slow heart rate, anxiety, excessive sweating or not being able to sweat, fatigue, feeling short of breath (especially during exercise), thirst and headaches.

‘Abandoned and discarded’

The first neurologist I saw left me in tears.  When I told him about others (with similar symptoms) I had found, described my symptoms and asked about small fiber neuropathy his first words to me were ‘I’m a fan of vaccines.’ He dismissed me, saying there was no way a vaccine would cause this.  His parting words to me were ‘you have two choices here, some side effects from a vaccine or possible death from covid, I know which one I would choose.’ I felt utterly abandoned and discarded.

The immunologist ran a huge amount of blood tests to rule out any other causes and said she would see me when the results came back.  I received an appointment to ‘see’ her again six months later, by phone. Six long months of being sick, worrying and no closer to answers.

During this time the relative with cancer underwent surgery but ended up back in hospital with sepsis. It was a horrific time for us all.

I saw a cardiologist in October 2021 who again acknowledged the possibility that the vaccine caused an abnormal immune response and worsened my existing PoTS syndrome.  He ordered a holter monitor and a cardiac CT angiogram.  It took 14 months for me to get the CT scan. I am now waiting on an echo to rule out myocarditis.

I forwarded research documents that confirmed small fiber neuropathy post-vaccine from the National Institutes of Health (NIH) to the neurologist I had seen initially. I got a second appointment to see him where he again dismissed me. He picked holes in the research paper and told me ‘it’s not my area’ and referred me to another neurologist.

My phone consult with the immunologist came around and I had forwarded her any research papers I had, which she gladly discussed. Again she acknowledged my adverse reaction. She felt it was neurology I needed (to see).  When I discussed that I felt my neuropathy was immune mediated (abnormal activity of the immune cells) and therefore possibly treatable she assured me she’d look at this and bring it to a multidisciplinary meeting. We discussed IVIG treatments (IVIG = Intravenous Immunoglobulin a therapy treatment for patients with antibody deficiencies) and plasmapheresis (removal, treatment, and return or exchange of blood plasma to the blood circulation) and how these were being used in Germany to treat adverse reactions. I was so relieved to be listened to.  I subsequently got an appointment to see her again in June 2023. Seven months on from our conversation, there has been no contact about the multidisciplinary meeting or possible treatment. 

I saw a second neurologist in September 2022. She was direct and told me she suspected small fiber neuropathy.  She was diagnosing me clinically based on symptoms; she refused a punch (tissue) biopsy saying it wasn’t necessary and could be false positive or negative. She ordered nerve conduction tests to rule out other causes and she said she was ordering an urgent MRI on my spine to rule out transverse myelitis.  I won’t have the MRI until next month (April 2023). 

‘A breath of fresh air’

Last August I paid privately to see Professor Jack Lambert, Infectious Disease Specialist.  He was a breath of fresh air, having seen so many other consultants and getting no answers.  We discussed vaccine induced long covid, he felt long covid and vaccine-induced long covid were very similar in many ways and discussed possible autoimmune issues and inflammation.  He ran blood tests and started me on a protocol of medication and supplements.  He was empathetic, knowledgeable and reassuring.  He was actually able to describe my symptoms!

So now, twenty months later I have a diagnosis of vaccine induced long covid and a clinical diagnosis of small fiber neuropathy.

Describe how your daily life is affected.

The impact on my life is indescribable. The physical symptoms have been debilitating. The head pressure/ pain and neuropathy are so hard to live with.  I have to use heat pads or ice on my feet and legs to relieve the pain.  I can sleep for ten hours and still be exhausted the next day.  I drag myself through each day hoping tomorrow will be better.  I seldom see friends anymore; my energy goes on the basics of everyday living.  I never know from one day to the next how I will feel.  You certainly learn who your friends are when going through hard times but I do have a few that have been very supportive and I’m grateful to have them.  My family have always been here for me and supportive but as the ‘mother’ I don’t want to upset them so I often just stress alone. I try get on with things and keep positive. 

Did you inform the HPRA?

Yes, the HPRA contacted me on several occasions asking about any diagnosis I received but I couldn’t give them anything as the appointments have been so slow in coming.  They contacted my GP, who again could only tell them my history and symptoms. My GP has always been very supportive but can only do so much.

What has been your experience of the medical system? How has this affected your illness/recovery?

The impact has been huge.  How can I recover without investigation and treatment? The stress and anxiety of being covid 19 vaccine injured is magnified by the ‘for and against’ narrative.  On one side we have ‘safe and effective’ and on the other side we have ‘serves you right, we tried to warn you.’ In between the two here I am suffering, abandoned.  It’s a long and lonely road.

My family as I said have been good.  I have had people say oh it’s because you had PoTS or because you were stressed.  I’ve had people tell me they have had all their vaccines and are fine.  My response to that is I don’t have a nut allergy but I believe some people do.

‘Hearing more and more stories like mine.’  

I feel society puts vaccine injuries into the same pot as anti-vax conspiracy theories.  I have spoken to several health care workers like radiologists, nurses, clinical measurement specialists when getting tests who have (quietly) told me they are hearing more and more stories like mine.  

Are you being heard/ understood?

By some people yes, the immunologist was keen and empathetic but then I didn’t hear from her.  I feel like I’m trying to break down a wall one brick at a time.  I feel like I have to apologise for my reaction and needing help, the pariah of covid.

Tell me about how your financial situation has been affected by your injury.

My husband is the main earner so I haven’t been struggling financially.  I have spent over €1,000 on private appointments and prescriptions.

To finish: tell me how you feel about the future.

My thoughts on the future vary with my symptoms. On bad days I feel like I’m trapped in this small life of just getting by. On good days I allow myself to believe that I am doing better and life will improve with time. What gives me hope is focusing on the good things, the wonderful people I’ve encountered along the way, the belief that my body can heal. It has at times been hard to hang on to that hope especially when appointments are so far apart.

It’s hard not to let it get you down sometimes.  I try not to look too far forward, take each day as it comes. I make a mental list of all the moments I’m grateful for at the end of the day but that’s hard on the days that every nerve in your body has been screaming at you in pain.

I feel like consultants have lifted me up only to drop me again.  Dr Lambert has been the exception.  His protocol (‘Pace not Push’ - Low Dose Naltrexone, and a range of supplements) seems to be helping somewhat, energy is a bit better and I’m getting days with less head pressure and pain.  I am really hopeful that things continue to improve and life can begin again.  I want to travel with my husband, go for long walks on the beach and just live. Life has been small for so long now.

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Warm thanks to those who support my work, it is much appreciated.

#LivesDestroyed #vaccineinjuries series part III

Previously in the series:

What's behind Irish media silence on vaccine harm?

Barry felt a pang of dread pre-Pfizer. He 'stamped it out.'

'I'd give anything to get my health back'