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J.L. – Maryland

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Describe the symptoms and the timeline of the reaction.

"On April 6 I was in all sense of the word relieved knowing I was finally able to get my COVID vaccine and have a wee bit of normalcy return back to my families life. Little did I truly understand what I was about to experience and that it would debilitate my life for months. Before April 6th, I was a normal 36 year old woman with no prior pre-existing issues. I got the J&J since there was no other option for a different type of vaccine to be administered, but at the time I did not care as long as I had some immunity from catching COVID. At 12:45pm I received my vaccination and sat for the allotted wait time. After sitting for 2 mins I began to feel my heart beat incredibly fast out of nowhere. My breathing became labored and I noticed heat flushing from my chest to my neck. The floor tiles on the ground appeared to morph and melt into each other, I realized I was hallucinating. I alerted the medic and mentioned my heart rate and they wheeled me to a medic station. I was assessed and the nurses explained I was most likely needle-phobic (which I am not) and that I was probably a bit nervous. They had me sit and wait an additional 40 minutes until things passed and I was sent home. I left that afternoon not understand what happened to me and I was extremely confused.

That evening I had the typical body aches and a low grade temperature. Of course I was expecting all of those things so I chalked it all up to a normal immune response, still left feeling confused by the events that had happened earlier in the day of course. Fast forward a couple days later I was sitting on the living room couch with my two children, who are 2 and 4, and noticed by body felt off. I stood up from sitting too quickly and began feeling the exact same sensation I experienced after the vaccine. After this occurred I was left quite frightened as to what was going on with my body. Then on April 15th I had another “spell” while my 2 yr old daughter was napping and I was doing crafts with my 4 yr old son. I began feeling off again out of nowhere and my heart rate soared. No matter what I did I was unable to bring my heart rate down. I ended up calling 911 and having an ambulance arrive at my home since I truly began believing I was having a heart attack. The EMT’s clocked me with a 102 degree temp. When I arrived at the hospital I was pretty much ridiculed and left feeling quite low. The immediately assumed I was having an anxiety attack and offered me something for sleep. This was before they got my X-ray results back of my chest with a positive diagnosis of pneumonia. After being prescribed azithromycin and sent home I was still feeling ill after finishing the round of antibiotics. I ended up calling my PCP for a follow-up since I began noticing my symptoms were evolving into neurological ones and that this couldn’t quite possibly be due to pneumonia. Involuntary eye movements, electric zaps in body and scalp, internal vibrations, muscle spasms, bounding heart, head pressure, ear pressure, tinnitus, clicking noises in head, paresthesia down my legs and arms, numbing of my bottom lip, strange fluttering behind my left ear near the trigeminal nerve, body tremors: legs, arms, torso, adrenaline surges, blurred vision, neck stiffness/pain, edema in both ankles that lasted for 4 months, flight or fight mode, feeling faint/lightheaded, red dot rash on ankles, nerve pain that zaps from neck into torso, left shoulder pain, left arm pain, heart palpitations, chest pain/rib cage pain, right leg buckles, heart rate jumps up and down, and pots like symptoms.

My PCP ran extensive bloodwork and diagnosed me with Lyme Disease on April 22nd. I explained all of my symptoms to my PCP and he expressed it was all due to Lyme. I accepted this afterwards and began a round of doxycycline for 3 months. Assuming all of my ailments was due to Lyme and not the vaccine I went ahead and made an appointment with a Lyme literate Doctor; LLMD. Unfortunately the appointment would not be had until July. In the meantime I began having daily spells where I would all of a sudden feel light headed and faint pretty much at all times. My heart rate would soar up and down to where it was absolutely exhausting, and I kept experiencing a bounding heart beat that would not let up. I was able to feel my heart beating in extremities that I had never felt before. My heart beat would be in my neck, arms, and legs, it felt very unnatural, because of this I ended up making an appointment with a cardiologist in June. I had an entire cardio work-up done, ekg, holter monitor for 24 hours, stress test; and echocardiogram. Everything came back normal and I was still left very confused what was causing my heart to beat with such gusto. The cardiologist was really of no help, and expressed that everything would go away with time.

In July I finally sat down with the LLMD to discuss my Lyme diagnosis. Upon our first consultation she expressed that although I was Lyme positive it was a new infection and it should not at all be displaying symptoms such as the ones I was experiencing. She stopped the remaining 3rd months worth of doxycycline and ran more bloodwork to determine what might be going on. Lyme this time around tested negative, and I was found to then have babesia duncani. She believes I developed this when I received a blood transfusion years prior after I had hemorrhaged delivering my son. I went on a round of treatment for the babesia and have since tested negative for that as well. My LLMD expressed that I should see a neurologist for the neuropathy I was beginning to experience, as well as the other symptoms too. She feels that I developed long COVID from the vaccine and diagnosed me with an inflammatory response, LHCS (long haul COVID syndrome)

In August I finally sat down with a neurologist and was completely dismissed, entirely. I left the appointment feeling incredibly defeated. I gained absolutely nothing from this appointment and wasted my time.

I also had an videonystagmography test done to determine if the dizziness and episodes of feeling faint had anything to do with true vertigo and tinnitus; and it came back negative for any true issues.

The last appointment I had with my LLMD she had ordered me an X-ray of my neck because I expressed to her the internal vibrations often feel as if they’re stemming from my neck, and the nerve pain also seems to come from the neck. The images came back positive for arthritis, and DDD showing signs of cervical myelopathy. My next step is a rheumatologist appointment next week.

I am still experiencing paresthesia down my arms and legs, ear fullness, head pressure, chest pain, heart palpitations, heart rate jumping up and down upon standing or over exertion, blurred vision, internal vibrations, bottom lip numbing, and intermittent muscle spasms and it’s been almost 7 months. I just wish I could get my life back and rewind time and cancel my appointment on the 5th of April. The J&J has changed my life and not for the better.

I’m left still to this day trying to figure out what’s going on with me. I cannot get a single western med Doctor to acknowledge this has anything to do with the vaccine. It’s exhausting.

I’m also sick and tired of people stating this is anxiety. It’s far from it.

-J.L. - Maryland


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