What was your life like before you received the COVID-19 vaccine?
Describe the symptoms and the timeline of the reaction.
I got the vaccine on the 26th of May 2021 (left arm) I didn’t feel anything immediately and I was continuing on with life as normal, so I didn’t see any issue with the second which I received on the 23rd of June 2021. (left arm) I felt nothing immediate once again. 2 hours later, I was home working on the house and suddenly my left arm started to tremor moderately. I stopped working and took Tylenol, the tremor stopped and I didn’t think too much of it and just went on with my day.
The next day the tremor came back but it had spread to both of my arms. Obviously I was concerned but I hadn’t made the correlation that this was from the vaccine yet. I called Telehealth and told them that both of my arms were uncontrollably shaking, and they said that they recommend I record footage of all my symptoms and that I should immediately go to the emergency room.
My mom drove me to the hospital, on arrival we told them what was happening and waited an hour and a half before I was seen, meanwhile my arms were still shaking. When the doctor saw me I wasn’t feeling any pain, the doctor started me on IV fluids and ran blood tests. They thought I was suffering from muscle fatigue or Rhabdomyolysis. The bloodwork came back normal and after 13 hours of bilateral tremors, the tremors stopped suddenly, and the doctors felt that there was no reason to keep me at the hospital any longer, so I was discharged empty-handed. They just told me to stay hydrated and to follow up with my PCP (primary care doctor).
I left the hospital and on the way home I got some electrolyte water, I went straight to bed and rested. The next day, I awoke to the tremors happening intermittently which continued throughout the entire day. My symptoms persisted and continued to intensify over the coming days, and my legs started to suddenly tremor so we made a call to the PCP on the 5th of July, to which we were able to get in and see her the next day. I told the doctor what I was experiencing. (all the symptoms above). The doctor responded; she basically said that she wasn’t sure what was happening and I was sent off for a CT scan and referred for a neurology consult. The CT scan showed there were no abnormalities.
For the next week, I was at home trying to manage my symptoms with rest and fluids, as that’s what I was told to do, and we were also waiting to get in to see the Neurologist for further answers. During that week we had to borrow a wheelchair as the duration of my symptoms started to increase going from minutes to hours and I was unable to walk at this stage. This is when we started to question things ourselves. The only thing that had changed in my life was me getting the vaccine.
We decided to contact and told them I was having neurological symptoms, we were trying to find out if they had any information on this. They read from a script, that it was under emergency use and they didn’t have any liability and told us that all can result in mild reactions. We asked if there was anything they could do for us, but they basically didn’t want anything to do with us at all.
I got in to see the Neurologist on the 13th of July. After presenting all of my symptoms to the doctor, we told him that we thought this was a injury. They ran a basic neurological examination, it showed my reflexes, strength, and cognition were intact. The doctor had never seen anything like this ever before, he whispered and said to my mum, “if this was my son, I would take him to a university hospital, who knows a lot more about the than I do, and to see someone who specializes in this”.
During the visit to the Neurologist my symptoms were increasing on the spot, I was tremoring severely and we had to act fast, so I was taken straight to the emergency room. On arrival, we told the triage nurses that we thought this was a Injury, and they said that they didn’t know much about this, but they would try and fast-track me to the neurology team.
It was quite a significant wait to see someone, eventually, I got a CT scan from the waiting area and I was started on IV fluids and had blood tests underway also. The bloodwork revealed that I had elevated white blood cells and elevated platelets, which we know means the body is dealing with some kind of inflammatory process, however, the doctors did not say that to us and because I wasn’t feeling any pain, the doctors basically said the emergency room wasn’t the right place for me and I needed to see a movement specialist, and they gave me an expedited referral.
I went home and there wasn’t any management for my symptoms, my family just tried to keep me safe. If I was able to walk, I would, otherwise, I just had to use the wheelchair. A few days later, we called again and told them that my symptoms were continuing to worsen. We asked if someone could call me, who could give us some information, and if someone was going to do anything. They said someone “might call us back”. My mum got hot at this point, She said “I’m a health care professional and this isn’t all in his head; the is causing my son to have this problem and someone needs to give me answers.” They put me on hold and asked for a doctors name that they could call. We gave them the first neurologist that we saw and they said that they would call us back. They never called back, but they did send us an incident form. We needed a doctor to take us through the process of filling out this form, which we didn’t have at the time, and still don’t.
On the 20th of July 2021, I had the appointment with the Neurologic Movement Specialist, I saw a paediatric and an adult neurology movement specialist. The result was them giving me the diagnosis of Functional Neurologic Disorder (FND) after running some brief physical examinations. We asked if they could trial me on the steroid levodopa and they said they no. They claimed that they didn’t want to enter any toxins into my system. The adult neurologist told us that the only stays in the body for a couple of weeks. By this stage, we had done a whole lot of our own independent research and challenged that, and said this was an mRNA and that it doesn’t leave the body in the time they stated, but in fact crosses the blood-brain barrier. We also said that the spike proteins were cytotoxic, as Dr. Robert Malone had attested. The paediatric neurologist agreed with us, but the adult neurologist didn’t.
Finally, the adult neurologist did concede that the might have precipitated “something,” but that my condition was most likely brought on by stress and anxiety, which wasn’t true. They did not assess me psychologically to support her claim and offered neither a differential diagnosis nor follow-up. I was told to follow up with my PCP and start physical and occupational therapy, and to undergo psycho-analysis. She told me that “maybe we will know more when you’re your mother's age,” and that she “had other patients to see.”
At this stage, I was stuck in a wheelchair with intermittent upper body tremors and constant lower body tremors. I started physical and occupational therapy on August 3rd. On the 11th they tried progressive relaxation and after I did this, I developed dystonia in all extremities, I also developed facial grimacing, clenched jaw, pursing of lips, and the inability to open my eyes, and from this point on these symptoms persisted along with the tremors, being intermittent and happening at random.
On the 23rd of August, I started having involuntary head movements where my head was shaking back and forth, side to side uncontrollably in addition to all of my other symptoms. On the 27th my chest muscles started to tighten making it difficult to breathe, this was less frequent but still scary nonetheless and has since progressed to involuntary vocal grunting noises.
My dystonia continued, my back was arching and I would flex forward involuntarily, I couldn’t sit upright. I called around to find another neurologist that could help with the dystonia. I had an initial visit with another neurologist on the 1st of September to help us understand why I was having dystonia. The doctor said he was a generalist and didn’t know what to say other than to see a movement specialist and gave us a referral to a new movement specialist. He ordered an MRI which was done on the 15th of September 2021. Until this point, no one would see us.
On October 4th we went back to the doctor who did the MRI to get a reading. The report said there was an “ill defined focus of abnormal signal in the left parietal white matter of unknown etiology, patient age argues against the residua of prior ischemia, a demyelinating lesion is possible although the appearance is not characteristic. He also has a small 5mm well-defined focus of abnormal signal posterior to the fourth ventricle of unknown etiology”. So based on that, the neurologist ordered a lumbar puncture which was performed on October 18th, and on the 25th of October, the results came back negative. He then recommended we see a movement specialist but we were unable to get in and after months of trying to get an appointment with her, ended up seeing a neurosurgeon when we were supposed to meet with the movement specialist.
I saw the neurosurgeon on November 1st, 2021. He said that the lumbar puncture done was very basic and there was an opportunity to do a more in-depth study, but we would have to see the movement specialist in order to have the test done, and he recommended a multi-disciplinary approach to include the movement specialist, neuropsychology and EMG testing.
I had an EMG of my lower extremities on December 1st, the results came back negative. My neuropsychological exam was on November 30th and December 2nd with findings of mild anxiety. The doctor recommended psychotherapy or an in-patient program, implying that my condition was still all in my head.
On the 8th of January 2022, I was at physical therapy and I had my first episode of upper body flaccidity, which is basically a form of paralysis. My brain wasn’t connecting to my limbs. It was quite common that during physical therapy I would end up in the wheelchair unable to walk or experiencing bouts of severe dystonia. They never sent me to hospital, it just became normal and we were told by the hospital that Emergency Room wasn’t the right place for me.
Symptoms progressed to entire body flaccidity to the point of being paralysed for up to 6 hours, where all I could do was move my eyes and mouth. It was extremely terrifying not just for me but my family who are looking after me. There was no one that could help me, I just had to wait it out and hope that It would pass. This has become a part of my daily life, maybe not to that extent every day but the severity Is just as bad in other ways. I have a complete lack of independence and uncertainty of when episodes will begin or end. Literally every day, I lose control of my body and this has not stopped. Nothing improved and has only gotten worse.
At the end of June, I started experiencing what was later diagnosed as bilateral ballistic movements. I would run into walls, walk and not be able to stop, punch holes in walls, kick walls, and anything or anyone in my way. At times the movements were very coordinated like I was boxing or performing a kata. (I used to participate in boxing classes and marital arts, which we think has something to do with this.) These new symptoms have worsened over time, I was not violent towards my family in any way, it was just all involuntary movements and it got to the point my family had to call the ambulance on July 20th, 2022.
The ambulance arrived and took me to the Emergency room, they gave me IV fluids and tested my blood. I never heard the results of this test and they put me on clonazepam, and as soon as my symptoms disappeared, they discharged me from the hospital. I have now been on this drug ever since which does help me a little bit. I saw my neurologist on the 28th of July, we told her that we were no longer going to accept the diagnosis of FND due to stress and anxiety, which was following us around electronically no matter who we saw. She said she was going to look into possible treatment but she didn’t know what treatment to put me on. She called my mum the next morning and said she had found 2 articles of people with hemiballism post and the people were treated with high d0$3s of IV steroids.
I was admitted for 3 days on the 29th of July and I received 1g of IV solu-medrol daily for 3 days and had complete remission of my symptoms. All my symptoms were almost completely relieved for the entirety of my stay. When I left hospital, the only medication I was given was the clonazepam, and I was normal for a day after my discharge. But then, two days after I was discharged, my symptoms returned mildly but quickly escalated back to what had become normal before my steroid treatment.
My symptoms were so out of control on August 4 that we had to call 911, and an ambulance and fire rescue were sent, they had to give me a sedative to be able to transport me to the Emergency Room. On arrival, they tied me to the bed but I was still shaking violently the entire time out of my control. They called my neurology team and they said that they didn’t want to do anything. They suggested that I stay on clonazepam and recommended I take Benadryl to keep my nervous system sedated. Once the symptoms stopped, it was the quickest discharge we had ever seen.
On November 1, 2022, I was able to get an appointment with Dr. Pierre Kory, who after listening to my story, diagnosed me with neuroinflammation caused by Post COVID Vaccine Syndrome. He prescribed a multi-step treatment plan including an increased daily dose of clonazepam, a tapering dose of prednisone, ivermectin, naltrexone, and hyperbaric oxygen therapy.
I have been home and just managing my condition the best I can with my family ever since.
To this day I’m mentally 100% myself but I’m only 10% of my old self physically. Currently, I’m now experiencing vocalizations that are similar to Tourettes. I’m not saying anything intentionally but many sounds and screams come out of me uncontrollably, and I’m still experiencing all of the symptoms I have listed in my story above. This happens several times a day and I’m bound to a wheelchair and my bed, and if I try to walk, I often fall. I’m under constant care and my brother is always having to hold me down when I am uncontrollable.
Describe the solutions that helped your symptoms
Which solutions were not helpful?
What would you like others to know?
I certify that the statements made in the above submission are true and correct to the best of my knowledge, information and belief.
I agree to allow React 19 to share my testimonial publicly on its website, social media, or webinar platforms. I further understand that my testimonial will be posted publicly and React 19 cannot prevent third-parties from sharing it once public.
I agree to notify React 19 immediately should I discover inaccuracies in my testimonial in order to maintain the integrity of React 19's advocacy platform.